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General Category => Skin Complaints and Skin Disorders => Topic started by: chevstriss on Friday January 21, 2005, 09:35:59 PM

Title: Schamberg's?
Post by: chevstriss on Friday January 21, 2005, 09:35:59 PM
today my dermo said i have Schaberg's.  prognosis seemed pretty glum.

2 mos ago, i thought it was a patch of poison ivy, as i had been crawling in the foliage to put up Xmas lights.

about a week later, if formed a perfect circle, did not itch.  I showed it to a pharmacist, and several pediatrician friends, who all said ringworm.

i got over the counter fungicides, which didn't change it at all, so today i went to the dermo.  He said Shamberg's and just gave me some cortisone cream.  which probably won't do anything.

looking up Schamberg's on the net, my mark looks nothing like it.

It is red/magenta, not orange/brown

it does not itch., has almost no feeling.

it is raised up from the skin in a circle, about 2.5" diameter.

No other marks anywhere.

It is on my calf, and "dotted" like the descriptions.  I'm a 45 yr old female.  no one in my family has had this.

I'm getting a 2nd opinion monday.
Title: Re: Schamberg's?
Post by: Bamawing on Saturday January 22, 2005, 01:38:59 AM
Welcome, chevstriss (in case I missed your first two posts)! :hi:

Good luck with the second opinion.... sounds like you need it! Let us know what it turns out to be, OK?
Title: Re: Schamberg's?
Post by: peterb on Saturday January 22, 2005, 03:03:52 AM
Good luck with 2nd opinion, keep us informed.
Title: Re: Schamberg's?
Post by: Brujo on Sunday February 13, 2005, 07:58:04 PM
Hello.Well,i got Schamberg (5 years now) and maybe i can tell you something,even if it is impossible to say you if it is Schamberg or not (i mean...i can't see the lesion you have).
Do you have just one lesion,or other are coming out?Where do you have the mark?Schamberg mostly come out on arms and lower legs (and on feet).As the lesion comes out they are red but then they turn to orange,brown,and slowly (damn damn slowly believe me!) they disappear.For what i know there is no cream or cure good for that (if you don't have itch no cream can help).Bye!
Title: Re: Schamberg's?
Post by: North on Wednesday May 04, 2005, 04:13:43 PM
Okay, I know that this topic is pretty old, but don't want to open a new thread.

I found out I have Majocci- Schamberg just yesterday. I've had the lesions for almost three years, but I never went to the doctor because they didn't itch or hurt. I had to go to the doctor for something else and showed him the lesions and he ended up sending me to a dermatoligist, who diagnosed majocci-schamberg.

I would like to talk to other people who have it. Like Brujo (I read other topics about this) I found out that the lesions get less in the sun or sea :)

English isn't my first language, so I may make some mistakes in my spelling!

Greetz, North
Title: Re: Schamberg's?
Post by: eurohoney on Wednesday May 11, 2005, 08:57:30 AM
Hey all,

I'd like to share my story concerning Schamberg's. A little over
a year ago, I noticed small, reddish spots on my legs. I didn't
pay too much attention to them, since they didn't itch and I've
had a history of "weird skin" with all the allergies and eczema.

Things got worse though, and soon I had screaming red marks all
over my feet, legs, thighs and bottom. Some even appeard on
my arms, near the wrists. That's when I decided to go see a
specialist and I was diagnosed with Schamberg's. The doctor said
there's nothing out there to cure this, but lotions might relieve
itching. I didn't have that problem though. I was also told that
there's a good chance of this healing completely since I'm so
young (back then 19 yo).

It was quite a shock to me psychologically to hear that there was
no cure. It was summer, my lower body looked absolutely awful and
I was too ashamed to go to the beach. Gradually (slowly but surely)
the marks went away, but it took like over month or so.

Schamberg's has returned though, I get those reddish brown spots
on my legs every now and then. Sometimes they're bigger, sometimes
smaller. I've tried to see any connection between the "eruptions",
if they were related to stress, smoking cigarettes or exercising.
So far I haven't noticed anything, the marks appear whenever they
want. Luckily, I haven't had such a huge attack like in summer 2004
when Schamberg's disease spread all over my limbs and I'm hoping
it will never happen again.

So far I haven't discovered any way to beat this disease except
for accepting it. Those steroid(?) creams ordered by the doctor
didn't help. I've read somewhere on the net that using K vitamin
cream might help the iron absorbing back faster, but I haven't
tried that yet.

Reading all your stories has been supportive for me, it's good to
know that I'm not alone struggling with Schamberg's. Up until
discovering this forum I haven't know one single soul with the
same condition.

I hope you all are doing better!
-Ilona
Title: Re: Schamberg's?
Post by: North on Friday May 13, 2005, 05:02:05 PM
I get what you mean! I never heard of the condition before I got diagnosed with it.
Luckily I never had as much spots as you have had. It started with a lesion on the back of my lower leg which dissapeared after about a year. Then I got a new lesion just under my knee (about the size of a tennisball). I didn't go to the doctor because it didn't itch or hurt. But when I had to go the doctor's for something I had him take  a look. He perscriped a few kinds of creams, but nothing helped. In the end he send me to a derm and he diagnosed it.
My biggest lesion is finanly dissapearing :D, but I have three new ones on my other leg now (including the first one on my upperleg :( ) I hope it won't go on like that.

I'm young as well (I was about 15/16 when I got my first spot) I'm 18 now, so I'm hoping it will go away

Greetz, Weena   
Title: Re: Schamberg's?
Post by: eurohoney on Friday May 13, 2005, 05:21:24 PM
Hey Weena!

Thanks for sharing your story. I'm glad to hear you haven't had so many lesions as I have.. and we're both young so maybe this annoying disease will go away for good one day!

So one of your lesions stayed for a year? Wow that's for quite a long time! Mine are like, I don't know, they keep "moving" like clouds in the sky. It's really weird. Do your legs ever ache? You know because sometimes when my skin tingles I could swear I can feel the blood cells leaking out, or maybe it's just my imagination!

Another question... are there different types of Schamberg's?

-Ilona
Title: Re: Schamberg's?
Post by: North on Friday May 13, 2005, 05:26:42 PM
My legs tingle sometimes, but that's just when I'm tired ;) My lesions usually stay for over a year  :(

Schamberg is a form  of pigmented purpura (Purpura pigmetosa in Dutch) so is Majocchi. My derm diagnosed me as Pigmented Pigmentosa: Majocchi- Schamberg. When I look at the internet, my spots look most like Schamberg's, so I don't know  ???

I see you are from Finland! Wow I would love to see that country (but then again I want to see many many countries) :D

Pigmented Purpura http://dermnetnz.org/vascular/capillaritis.html
Title: Re: Schamberg's?
Post by: eurohoney on Friday May 13, 2005, 05:31:27 PM
You know, my derm was so happy(!!) to take a look at my legs.. She told me she hardly ever sees Schamberg's... And especially since this disease is more common among men she just got all excited about me being a young girl with PPP :-\.

I read your post at the introduction section and noticed you're from the Netherlands! That's way cool, I have a cousin living in Amsterdam but I've never got around visiting her...
Title: Re: Schamberg's?
Post by: North on Friday May 13, 2005, 05:42:02 PM
Lol, I had a student examening me and he was so confused. He made "hmmm, right, oh yes, oh no........" sounds for about 5 minuts  ;D I told me he thought it was ringworm, but had to ask the derm.

I heard the derm say "ow just the legs", he got in, looked at my legs, palpated the spots and went "Purpura Pigmetosa: Mucha Habermann"  a rare condition.

The student went all exited  ;D.

When I got home my derm had called, he had given me the wrong diagnoses, it should have been 'Majocchi -Schamberg"  ;)

Amsterdam is cool, but I come from the very South of The Netherlands, near the German and Belgian boarder (where Bush was last weekend).
Title: Re: Schamberg's?
Post by: eurohoney on Friday May 13, 2005, 05:49:48 PM
LOL so your doctors got excited about your condition too?? Heheh, I know the feeling... Kinda weird though seeing other so "happy" about it whereas I was crushed after the diagnose.

I checked out the link, thanks for sharing it. My lesions look exactly like in the first pic, only mine are bigger and I have more of them >:(. Did you start getting your lesions after medication or something like the page suggests could cause these problems?
Title: Re: Schamberg's?
Post by: North on Friday May 13, 2005, 05:56:00 PM
Mine look the same as in the first pic too only bigger and fewer ( I have *starts to count* 7 lesions now)

I got mine before, but I thought about it and my lesions did get worse after taking birth control pills. (I went for them and I showed a small spot back then) he gave me a cream and when I went back for a check up (for the pill) my lesion had grown. Both my doctor and me thought it was from that cream, but it could have been the pills which worsened it  :-\

Maybe I should call him
Title: Re: Schamberg's?
Post by: eurohoney on Friday May 13, 2005, 05:59:20 PM
OMG... yours got worse after the pill? You know, I've got a doctor's appointment for next week because I need to start taking the pill too. Now I'm having second thoughts though. But why would hormones and Schamberg's have any connection? That doesn't really make any sense... then again, the whole disease doesn't many any sense to me :P!
Title: Re: Schamberg's?
Post by: North on Friday May 13, 2005, 06:03:09 PM
I read about someone getting Schamberg's after taking the pill. I allready had it!

And well it could just as well have been the cream, because when I stopped putting it on, it went better :).

I don't think I'll stop. I might go for a different kind of pill (I have microgynon30 now), but I wouldn't want to go back to not using it. I had a lot of cramps, so.....

Ah well we'll just see.
Title: Re: Schamberg's?
Post by: eurohoney on Friday May 13, 2005, 06:06:48 PM
Here's another Schamberg link with some interesting info http://orlandoskindoc.com/schambergs%20Purpura.htm although one point there isn't true.. it can spread beyond the legs like mine did! It was awful, I had just met a new guy and I was so worried he'd think I was some kind of freak show with that giraffe skin but luckily he proved me that his love is not just skin deep :).

I'm so glad you brought up this issue about the pill. I definitely gotta ask the doctor about it...
Title: Re: Schamberg's?
Post by: North on Friday May 13, 2005, 06:10:27 PM
Thanks for that one.

My boyfriend had never noticed the lesion before I went to the doctor!  ;D
Love makes people blind :)
He's got a skincondition himself, but no one knows what it is :(
Title: Re: Schamberg's?
Post by: cdrcdr7 on Friday May 20, 2005, 04:41:55 AM
I had Schamberg's disease for about 5 years in the mid-90's. It cleared up spontaneously. I was in my 40's then.

It started as a itchy spot on my right calf which was very dark red for the duration and made me miss out on swimming fun or even wearing shorts for those years. The spots would even pop up on my face at times. I found that any new spots would clear up if I put the presciption steroid creme on immediatelty when they appeared.

I hated the idea of using this creme though, so I used it sparingly.

Searching the web on this I found one possible clue. This link
http://64.233.167.104/search?q=cache:0eXVxjq_6isJ:www.tmd.ac.jp/med/derm/J_Am_Acad_Dermatol_2002_46_942.pdf+schamberg+skin&hl=en
describes a possible connection to "odontogenic infection" and Schamberg's disease.

I recall having irritated gums that I really would not notice except for the dental assistant comments when getting my teeth cleaned. When I bought an electric toothbrush these dental conditions were eliminated. Maybe that was it in my case... very interesting.

I just now searched for Schamberg's disease because I was not sure how to spell it. When I went to donate blood I was trying to explain it and I do not think they could find information.

While searching tonight I found this forum and then the article on "odontogenic infection" (which I also keep forgetting how to spell).

best regards,

bill p.
Title: Re: Schamberg's?
Post by: Sha on Friday May 20, 2005, 05:56:20 AM
I just read all of your posts & I feel awful for all of you!  No treatment & no cure?  I hope this goes away completely for all of you.  Please keep posting & I will keep reading.  Let us know how ya'll are doing.

Sha   :hugs: :hugs: :hugs:
Title: Re: Schamberg's?
Post by: North on Friday May 20, 2005, 07:50:14 AM
Thanks cdrcdr7 for the reply :)

What does an "odontogenic infection" mean?  :-[ I'm Dutch and though I know a bit of Latin, I can't make it out.
I went swimming a couple of weeks ago. People have to take me as I am. I only have it on my lower legs (apart from one spot), so nobody sees them when I am in the water. I also wear shorts or 3/4 pants. The sun (or sea) do a lot of good to my lesions. So trying not to show them only makes it worse.

_at_ SHA,  thanks for your post  :hugs:!  I see you have eczema, which seems worse than my case of Schamberg's. I'm glad it doesn't itch or hurt for me.

To  anyone was has (had) Purpura Pigmentosa, my derm told me it could take 6 months to 6 years to clear up. But I have heard people who have had the spots for over 6 years.
Do you have any experience with it? I have the lesions for 3 years now.   
Title: Re: Schamberg's?
Post by: andyb on Friday May 20, 2005, 08:15:44 AM
Hi North

re your question "What does an "odontogenic infection" mean?"

I'm guessing but "genic" normally refers to the creation of things (hence genesis) and I think "odonto" is something to do with teeth.

As this is jaw related I would think that this must refer to the area of the jaw that produces the teeth  ???  Anyone else?
Title: Re: Schamberg's?
Post by: phina on Friday May 20, 2005, 08:19:51 AM
odontogenic=teeth forming
Title: Re: Schamberg's?
Post by: North on Friday May 20, 2005, 04:41:38 PM
Thanks :D

I looked it up as well :)

You were both right.

I never had much trouble with my teeth or gum. I did have braces, and my gum got a bit sensitive because of it, but I've had my braces removed when I was 15
Title: Re: Schamberg's?
Post by: eurohoney on Friday June 17, 2005, 09:21:56 AM
How weird this Schamberg's can get..?? My legs have cleared up completely - and I can't find an explanation for it! This might be only temporary though but hope I will stay lesion free at least for the summer :cf:!

Best wishes to everyone!
Title: Re: Schamberg's?
Post by: North on Saturday June 18, 2005, 04:04:01 PM
wow :D :D :D

That's so good to hear! Mine have got worse the last few weeks :( They are bright red at the moment.

What did the doctor say about the pill btw? I was wondering about that last week.
Title: Re: Schamberg's?
Post by: eurohoney on Sunday June 19, 2005, 05:55:50 PM
wow :D :D :D

That's so good to hear! Mine have got worse the last few weeks :( They are bright red at the moment.

What did the doctor say about the pill btw? I was wondering about that last week.

Hi there, haven't seen you on MSN for some time! Hope summer is going well for you!

The doctor didn't say anything about the pill affecting my condition. She didn't even know at first what Schamberg's was! I haven't noticed these hormones making my condition worse. But I don't think that the pill would have helped my legs to get better, it's just a coincidence. New lesions are waiting around the corner, I'm sure.

I'm sorry to hear about your lesions :(, I totally know how it feels especially during the summer time! Hasn't the sun helped at all?
Title: Re: Schamberg's?
Post by: North on Wednesday June 22, 2005, 03:02:44 PM
I don't think so

*spotted another one today :(*

I'm pretty stressed at the moment so that might be a reason for my lesions getting worse
Title: Re: Schamberg's?
Post by: North on Wednesday June 29, 2005, 10:19:10 AM
They are dissapearing!!!!  :cf: :yay: :clap:


I shoudn't get too exited though, but it looks really good at the moment!
Title: Re: Schamberg's?
Post by: eurohoney on Monday August 29, 2005, 06:22:59 PM
They are dissapearing!!!!  :cf: :yay: :clap:


I shoudn't get too exited though, but it looks really good at the moment!

Hey sorry I didn't reply earlier (I was abroad the whole summer), happy to hear that you're doing better! How are you now? My legs are still lesion-free, this feels like a miracle but lets see if things will change now that winter is approaching...
Title: Re: Schamberg's?
Post by: North on Thursday September 01, 2005, 05:57:12 PM
Mine aren't. The lesions are still there :( They are not as red as they used to be, though!

I'm fine, uni started today, but I've had a pretty good holiday
Title: Re: Schamberg's?
Post by: eurohoney on Saturday September 10, 2005, 08:08:47 PM
OK. I spotted one. Wonder if it has anything to do with my new job where I have to stand all the time... My legs get very tired there and I can feel the blood packing up in my legs. Or then it's just my imagination :P!
Title: Re: Schamberg's?
Post by: North on Thursday October 06, 2005, 05:08:24 PM
Ow I didn't see your post Eurohoney! I'm so sorry to hear that your SChamberg's is coming back :( You really gave me hope when your spots seemed to be gone!

How are the lesions now? Have they gotten worse or not?

Mine are still the same. They are not as noticable as first though. The sun made them fade out a bit, but I didn't have much sun this summer (Due to the Dutch wheater and the fact that I've had surgery and needed some time to recover)

Title: Re: Schamberg's?
Post by: eurohoney on Friday November 18, 2005, 07:36:42 PM
LOL I should check back here more often.. sorry for the late reply! My lesion disappeared quite quickly and I haven't seen any since. So I hope this gives you more hope again. Never lose faith.. everything is possible! :)
Title: Re: Schamberg's?
Post by: chevstriss on Saturday November 26, 2005, 06:25:54 PM
well I'm BAACK and so is a bit of my Schamberg's.  the "locod Lipoid" steriod cream did help fade it.  But what removed it totally was the TANNING BED.  I know these are a  big no-no in the skin world.  I avoided tanning totally for my entire 30s, then realized my white veiny legs looked horrible anyway.  What was i saving that skin for? so at 39 I started tanning in a tanning bed, but never my face.  I cover that w/ a black tee shirt.  There are also areas, like lower arms, that i cover w/ 50 SPF or hang them outside the bed (they are splotched from hanging out the car window all my life.)

Anyway, it is my legs hat i like to get dark.

When diagnosed w/ the Schamberg's (tea cup width) last january, I asked the dermo what effect tanning would have.  He said it would make the lesion darker.  well, that didn't happen and i had a lovely golden quality all season.  My last session tanning was early October, and now my tan is fading, and GUESS WHAT'S BACK?  this time its the size of a quarter, same area, so I'm jumping on it w/ the steriod like stink on poo.

There is also an area nearby that is not circular, but raised up and turning white, as if it's shedding the last traces of tan.  I have a feeling that's Scham's as well and the lipoid seems to be helping.

YMMV but i have a feeling the sun thing works.  Of course, dermo's really can't say that since sunning can cause so many other problems.
Title: Re: Schamberg's?
Post by: lisa marie on Tuesday November 29, 2005, 10:01:47 PM
Hi,
I'm new here so I hope I am posting this to the right place.
I was told I had Schamberg's about 2 years ago.  Mine started as blisters/sores on my chest area mostly but I did have some on my legs and one in the hair line.  I went to the regular doctor who did a biopsy on one of the sores and he thought it was pityriasis rosea but gave me a antibiotic just in case I had an infection of some sort.  After this, the sores went away but the red blotches started to come out all over me.  I had them everywhere: legs, arms, back,buttocks, gential area.  I went to the one derm. who didn't know what it was and sent me to a major medical center.  While waiting for that appt. I went to another derm. who thought it was pityriasis too.  He said it was the worst case he had ever seen.  However, the derm. at the major medical center said it was Schamberg's disease.  The first round of this got some better but now it is getting alot worse again, especially on the legs.  Can't even wear sheer black stockings as the marks show thru.  I am just totally fed up with all this. :-[  and need to vent.  Also was wondering if others had theirs start out with blisters/sores, as one of the derm. didn't think there was a connection but I know there had to have been.
Thanks for listening .
Title: Re: Schamberg's?
Post by: chevstriss on Wednesday November 30, 2005, 11:24:54 PM
Lisa Marie your symptoms sound nothing like mine so I won't be much help.  I have heard of symptoms like yours on infants, tho.
Title: Re: Schamberg's?
Post by: North on Monday December 19, 2005, 12:39:28 PM
.

YMMV but i have a feeling the sun thing works.  Of course, dermo's really can't say that since sunning can cause so many other problems.

Indeed

I'm sorry to hear your Schamberg's is back :(

_at_ Lisa Marie, I'm sorry but your symptoms are different from yours as well. I hope things will get better for you soon!!!!

Title: Re: Schamberg's?
Post by: eurohoney on Sunday January 29, 2006, 07:42:27 PM
How is everyone's situation now? Mine is rather bad.... my ankles, feet and lower legs have lots of lesions. I'm not sure but they tend to appear in winter. Except for the first "attack" I had. The skin on the lesions is extremely dry, and no lotion seems to help. So... looking forward to spring time!
Title: Re: Schamberg's?
Post by: North on Thursday February 02, 2006, 05:01:25 PM
Stil the same, three on my right leg and a few small ones on my left leg. I 'never had any on my ankles though, luckily. I don't have attacks, I just get one extra lesion every few months which sticks around for at least 6 months :( I have most of my lesions for over a year   :(

It annyoing really, because every time I discover a new one, it means I will have it for at least 6 months.

Have any of you heard about someone who had Schamberg's but hasn't anymore? My derm said it would only last from 6 months to six years, but I'm beginning to think that he was talking about each individual lesion instead of the entire disease
Title: Re: Schamberg's?
Post by: lalag719 on Wednesday February 08, 2006, 04:07:29 AM
Hi - LalaG here - Just thought I'd share my angst with fellow sufferers. I've just been diagnosed with a double whammy, Lychens planus on my wrists and hands, and Schambergs on my ankles and lower legs. I'ts horrible. I can' t wear stockings any more as my legs look awful. Is there hope of this being only a temporary thing, or do I have to suffer my whole life long with this mess?
Please give me some hope if there is any to be had. PLEASEEEEEEEEEEE. Thanks ya'll
Title: Re: Schamberg's?
Post by: cdrcdr7 on Wednesday February 08, 2006, 04:32:06 AM
As I wrote last year -  I am one who had this for at least 5 years and it finally cleared up.

I said it began on my calf but it really was on  my shin(in front below the knee). It was very bad in that spot probably because I scratched on it in frustration at first.

At some point it just began disappearing and healing for no known reason.  I could tell everything was clearing up by seeing the other leg clear up and getting no new outbreaks. It was funny because when it was healing the one original spot was so dark it looked ugly even as it faded, and my sister thought it was something to worry about. I had to try to convince her of what it had been before - and how I was so happy with what she was looking at. :)

So there is real hope for you to have a full recovery - but if it has only been a year, it may be awhile yet.

Another thing about my case was that if I put the steroid cream on a new spot immediately - it would fade right away. Good thing because they would even pop up on my face! Otherwise they seemed to stay visible a number of months like yours. I would not describe what I had as blisters - there were just bright red spots.

I am not ruling out a miracle from God in that some things that happened in my life and marriage at that time - it was as if we had an arranged farewell honeymoon(after 30 years) before my wife died suddenly of cancer in 2000.

Anyway, I do hope you have a end of this soon.

bill p
Title: Re: Schamberg's?
Post by: Antischam on Sunday February 12, 2006, 03:12:49 AM
Im a 19 years old boy (near twenty now!) from Brazil, and i have Schamberg since i was 14. I tried many things, and a bunch of doctors, but i think i found the answer in the web, its a article about the cure of  a woman with schamberg. Here is the article:

http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf  (http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf)  (with pics before-after)

YOU MUST READ THIS!!!!   I showed this text to my doctor and he liked it. The article is about the colchicine.

Im taking colchicine and im getting well, (not so fast like the woman in this article) and saying goodbye to my spots (before the treatment, they have reached my right arm!). I decided to post because i want to help everyone :bighug: and spread this new amongst the unlucky schamberg's  carriers! Please try!! 

Ps: Sorry about my poor english...

Title: Re: Schamberg's?
Post by: cdrcdr7 on Friday February 17, 2006, 01:11:01 AM
This sounds promising. Shamberg disease is so rare and wierd ... it seems like something should be able to disrupt how it acts on cells or capillaries ... or whatever it is.!

Funny thing happened. While looking for this drug on Google and with word 'dermatologic' I fornd a page on how it helped a 12 year old girl with another disease called SCLERODERMA. This is like SHAMBERG disease in that there is no certain knowledge of cause or cure. A little girl in my late wife's family has this and it is disfiguring with toughening of body tissues. Painful?? The young girl had survived leukemia with a bone marrow transplant(after years of other treatments and hardships) , but now is suffering from this scleroderma.

Funny also ... how I was posting a reply about maybe God miraculously cured me ... which never occurred to me before that moment ... just as someone else was writing "Please give me some hope if there is any to be had. PLEASEEEEEEEEEEE." I received a warning from Skincell.org that someone had posted while I was writing my post and maybe I should stop. Sent it anyway.  Then your reply came in a few days later. Hmmm.

Thanks again for this information.

bill p
Title: Re: Schamberg's?
Post by: Wolfspirit on Friday February 17, 2006, 04:12:47 PM
Hi all, Is Schambergs disease the one in which rashes are a coppery colour.Due to the iron in blood being deposited on the skin as the capillaries leak.I thought that was called Progressive Purpuic dermatitis, or are they the same thing..Anyway I have read all the posts and for Bill p, Scleroderma is the nearest disease to what I have called Systemic lupus erythematosus, as both are Systemic they can attack any system of the body,usually skin and organs,they are both treated by rheumatoligists and are auto immune connective tissue diseases.There are so many diseases that effect the skin and other things.I joined Skincell because I have eczema and HS, not because of my lupus.But my name is due to this Wolfspirit - I have a malar rash on my face all the time like the markings of a wolf.
Title: Re: Schamberg's?
Post by: cdrcdr7 on Saturday February 18, 2006, 01:43:33 AM
Searching Google on "Progressive Purpuic dermatitis" I found this excellent page on "purpic" skin conditions.

http://www.drmhijazy.com/english/chapters/chapter40.htm#32

A little less than half way down the page(very long page) it explains that Shamberg's Disease is a particular form of "progressive pigmented purpuric dermatosis of unknown etiology" in the section on "CAPILLARITIS OF UNKNOWN CAUSE".

Interestingly, it explains other causes of similiar symtoms as "Differential Diagnosis" of
--Drug eruption: different types of drugs particularly carbromal and other drugs may cause similar types of purpuric skin lesions.
--Food allergy and food additives.
--Clothing dermatitis.
--Hyperglobulinaemic purpura.
--Early mycosis fungoides .

Thanks for the information and good luck with your various conditions - maybe you will find some one thing at the source of it all.

bill p
Title: Re: Schamberg's?
Post by: North on Thursday February 23, 2006, 06:44:22 PM
Im a 19 years old boy (near twenty now!) from Brazil, and i have Schamberg since i was 14. I tried many things, and a bunch of doctors, but i think i found the answer in the web, its a article about the cure of  a woman with schamberg. Here is the article:

http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf  (http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf)  (with pics before-after)

YOU MUST READ THIS!!!!  I showed this text to my doctor and he liked it. The article is about the colchicine.

Im taking colchicine and im getting well, (not so fast like the woman in this article) and saying goodbye to my spots (before the treatment, they have reached my right arm!). I decided to post because i want to help everyone :bighug: and spread this new amongst the unlucky schamberg's  carriers! Please try!! 

Ps: Sorry about my poor english...



Your English is very good.

My spanish isn't however, so I could only read the summary. Too bad they only tested on one person. My Schamberg's is very very good at the moment so I'm not going to rush to the doctor to get an appointment, but I never had it near as bad as the woman in the pictures! Thanks for sharing that article with us :)

Is Schamberg's really the same as Progressive Purpuic dermatitis? I've heard too many names for it allready (Also progressive purpura pigmentosa (sp?).

Nice to see so many posting over here and sharing stories!

Greetz, North
Title: Re: Schamberg's?
Post by: panthercat187 on Thursday March 09, 2006, 09:25:02 PM
Update, turned out to be an ibuprofen allergy.
Title: Re: Schamberg's?
Post by: lisa marie on Monday March 13, 2006, 09:18:54 PM
Hi Panthercat187,
I know how awful you feel.  Its easy to hide the marks in the winter but in warm weather it's very very difficult.  I had it pretty much EVERYWHERE at the beginning.  Now it is confined to my legs with a few marks every once in a while on my arms or hands.  Had a really bad episode of marks from about last July til Xmas or early January.  Then things started looking good and I was hoping it would stay that way.  But yesterday I saw a few starting up again so I am thinking its probably going to start getting worse again.

This may sound strange, but does anyone have gum problems when their marks are at their worst?  I seem to get like sores/blisters on the gum right above a tooth--not always the same tooth.  The skin will eventually come off and its sore for several days til it heals over. 

Panthercat, try and have a good trip anyway.
Title: Re: Schamberg's?
Post by: Wolfspirit on Wednesday March 15, 2006, 12:50:40 AM
I also have to cover up all the time as my skin is extremly photosensitive due to my sle, I cant go outdoors ata ll without wearing factor 60, its prescribed for me everyday, I cant go abroad or in the sun at all it's like being a vampire for me.I have also noticed that when my skin is blistering I get very bad mouth ulcers that take ages to heal.Lupus also has no cause or no cure, It's with me for the rest of my life, and I have had it now for 9 years.Im 36, there are days when I miss not being able to go out in the sun,and I always have to keep covered up.The local kids call me Vampire and my husband Viking as he has long redy blonde curly hair sand a beard, Ha ha.I wear black all the time as I like it ,it goes with me, we are into our rock music, heavy metal.
Title: Re: Schamberg's?
Post by: Sunshine77 on Wednesday April 12, 2006, 09:09:37 PM
bill p............thanks for the link to that website.
          What stood out in that link, was: "Purpuric eruptions may also be found in the course of candidal infections."   :o
I am presently seeing a naturopath who will soon be doing a yeast (Candida)cleanse with me.  I am going to see if the Schamberg's improves.  Will let you know.

Thanks

Karen
Title: Re: Schamberg's?
Post by: lou175 on Sunday April 16, 2006, 04:39:43 AM
Hi everyone

Im 21 yo and have just been diagnosed with PPD about 1 month ago. I have had the rash for aybe 2 1/2 months.  I tell you, it sucks. Mine are quite severe, all over legs, stomach, back and some on my arms.  I totally dont understand the disease, and havent yet worked out any trigger factors.

Up until a few days ago I was pleased that the rash seemed to be fading then overnight I woke up with the worst I have ever had - bright red and very dense. 

Its great to see there are others like me, but reading your posts has not given me much hope, especially considering I seem to be very early in my disease progression. Its coming into winter here thank god so hopefully by summer maybe some improvement? It is very depressing

Lou
Title: Re: Schamberg's?
Post by: Sunshine77 on Wednesday April 26, 2006, 04:40:08 PM
OH NO!!!!......IT'S SPREADING TO MY OTHER LEG!!! :o :o :o
WAAAAWWWW!!!!  I am so tired of this. :-[  Has anyone done any monitering of what they eat and how the Schambergs reacts??  I am still checking out a possible connection to Candida.  Fell off my "Candida diet" while travelling over the weekend, and now I see that the Schambergs is spreading to the other leg! :'(  Possible connection??  Don't know.  Within the next couple weeks I will be starting a Candida program, and then after that, one to get rid of mercury and aluminum.  Will keep you posted about any changes to the Schambergs.  I cannot believe that no one has tried to find a cure for this!!! >:(
....................OK, enough of my venting!!!  Will keep an eye on possible food connections, the Candida (yeast) thing and possible connections to dental conditions.  Am getting my teeth cleaned next Monday, and am anxious to hear what they say.
Good luck with your searches for answers!

Karen
Title: Re: Schamberg's?
Post by: Caspian on Thursday April 27, 2006, 12:12:36 PM
I share your frustration, Sunshine.  I woke up this morning to find a patch on my neck and one on my tummy, and I'm so worried that it'll spread elsewhere.  Legs I can manage to hide, but my neck is much more visible!

I think I'm going to up the supplements I'm taking and see if that has an effect.

I hope your Schamberg's clears up soon.  I'd be interested in hearing what happens on your Candida diet - maybe I should try something similar?

Best wishes

Caspian. x
Title: Re: Schamberg's?
Post by: Sunshine77 on Saturday April 29, 2006, 11:53:07 PM
Well this was a new experience:
    I went to try on shoes yesterday, and after the clerk went off in search of my sizes, I realized that once she got a look at my leg, she would be wondering what it was and if it was contagious!  It was a couple of panicky moments for me.  I ended up only trying on the shoe on my "as yet-not-that noticeable" foot.  Very uncomfortable feeling for me.  I guess I am still coming to grips with this.  I think I am living in the state of "denial," as in "this couldn't be happening to me!!!"
This is a "bitter pill to swallow" for a woman who's legs used to be her assests!!

*sigh*

Karen  :'(
Title: Re: Schamberg's?
Post by: Antischam on Sunday April 30, 2006, 02:38:03 AM
Hi friends! ;D

Im still using the colchicine and im getting better every day! five months without new spots!! yesterday i went to the doctor and he said that laser is good to clean the older spots (you know, the older spots are the worst of all!! They're really ugly! And my feet are full of it!)
Im gonna do this treatement for the next 3 months, and maybe i'll try the laser! Oh, i forgot to mention: My doctor have another patient with schamberg(woman, 50 years old), and she uses colchicine as well, and guess what? She's getting better!

Best wishes for you!



Title: Re: Schamberg's?
Post by: Sunshine77 on Sunday April 30, 2006, 03:46:38 AM
This sounds good.....what is colchicine??
Title: Re: Schamberg's?
Post by: Antischam on Sunday April 30, 2006, 11:45:59 PM
This sounds good.....what is colchicine??


For those wo lost: http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf

The article is in portuguese (my language!), but there's an abstract in english. Take a look, it could help!
Title: Re: Schamberg's?
Post by: North on Friday May 19, 2006, 06:19:25 PM
Hey everyone,

I haven't been here in ages, but I can see that a lot of new people have found there way over here! Welcome!

@Lou, I hope I can give you some hope, because my lesions are well almost gone! You can only see them if you know there there  ;D Finanly! I didn't do anything special really.

_at_ Antisham: what do you mean by older spots? Mine look better as they "age" they don't look as dark as they used to be. I'm getting a feeling I really have a different form of purpura pigmentosa. My lesions stay for at least a year (I have one for over two years now)  once they appear, and are bigger than the ones you all describe

_at_ Karen: I'm feeling so bad for you. I hope your lesions will clear up soon.
Title: Re: Schamberg's?
Post by: glava88 on Wednesday May 31, 2006, 10:41:09 PM
Hi, i'm new to this site. I've had schambergs disease for almost 3 years now. i'm turning 18 soon and its been really tough dealing with this disease. I've been researching alot on treatments for this disease but havent really come across anything. I kinda gave up on looking up treatments or cures because i havent found any that have worked. I figured i'd take a look today and maybe i'd be lucky. I went on this site and read about the medicine Colchicine. I was wondering if any other people have taken it and what has been the outcome? Also, I have auto-immune neutropenia (Low white Blood Cells) and am wondering if any other people have this with schamberg's disease. I am suspicious to see if thier linked somehow. For the people who know about Colchecine would it effect my White blood cells if i take it and are their side effects?
Title: Re: Schamberg's?
Post by: Wolfspirit on Thursday June 01, 2006, 12:50:57 PM
Found out a bit about Colchicine,I have sle and HS,eczema, endometriosis,asthma and fibromyalgia.I take methotrexate for my Systemic lupus.
GENERIC NAME: colchicine
BRAND NAME: Colchicine
DRUG CLASS AND MECHANSIM: Colchicine is a medication for acute gout. In acute gouty, there is a marked inflammatory response to the presence of uric acid crystals, causing severe pain, redness and swelling of the affected joint(s). Colchicine is useful in suppressing the inflammation (arthritis) in acute gout.

PRESCRIPTION: yes

GENERIC AVAILABLE: yes

PREPARATIONS: Tablets: .5mg, .6mg. Colchicine can also be given intravenously.

STORAGE: Store at room temperature, sealed, light- resistant container.

PRESCRIBED FOR: Colchicine is used to treat acute flares of gouty arthritis and to prevent recurrent acute attacks. It is also used to treat the inflammation of pseudogout, and other uncommon diseases, such as familial Mediterranean fever, amyloidosis, and scleroderma.

DOSING: Should be taken with food.

DRUG INTERACTIONS: Colchicine can arrest cell division and is avoided in pregnancy because of possible adverse affects on fetal growth. For similar reasons, it is generally avoided in children. Colchicine is not habit forming.

PREGNANCY: Colchicine can arrest cell division and is avoided in pregnancy because of possible adverse affects on fetal growth.

SIDE EFFECTS: The most common side effects of colchicine involve the stomach and bowel and are dose related. These include nausea, vomiting, abdominal pain, and diarrhea. One of the most worrisome side effects of colchicine is that it can damage the bone marrow causing severe anemia and seriously low white blood counts, thereby increasing the risk of infections. All patients taking colchicine long-term require blood count monitoring. Colchicine can also cause hair loss, weakness, and nerve irritation.


Title: Re: Schamberg's?
Post by: Sunshine77 on Wednesday June 21, 2006, 06:25:05 AM
      Hmmmmmmmmmm....where do I start???
I am still searching for an answer!  Am still seeing the naturopath and he now has me on a yeast killer.  He also has me on a supplement for the kidneys, which I think lowers the uric acid in the system. He did not say why he was putting me on this, but I find it interesting in that the med. mentioned above deals with the uric acid.   I am not seeing a huge change in the Schambergs, but supplements take time.
      I went to see a vascular dr. today.  Aside from someone leaving a very noticeable dent in my car door :'(, the appointment was uneventful.  You know, the usual "Oh that's Schambergs...they don't know how to cure it." 
      As I am getting rather disappointed with the conventional medical community, and more and more frustrated with the Schambergs :-\, I have decided to look into other areas.  In my readings I have come across information that says there may be a connection to, hmmmmmmmmm..I think they said khaki.  Now I wear jeans all the time, and I notice that although I have a few random spots on my feet, most of the spots are from the top of the running shoe and up to my knee. Does anyone else have this pattern.  Is there anyone else out there that thinks perhaps this could be a reaction to the material in their jeans. ???
       Second point...........could this be a reaction to stress???


Any other suggestions??


Karen
Title: Re: Schamberg's?
Post by: lisa marie on Sunday July 02, 2006, 03:02:33 PM
Has anyone read or talked to their doctor about Schamberg's leading to cutaneous T-cell lymphoma?  Have read a few things on the internet that says Schamberg's could be a precursor to this type of cancer. 

My marks were gone for awhile but now it seems like they are coming back again and in the same places they were before.  Strange!   Also, do anyone else's legs swell up?  Even my husband noticed my legs looked swollen.
Title: Re: Schamberg's?
Post by: Caspian on Tuesday July 18, 2006, 12:05:53 PM
Hello fellow Schambergers.

Karen, I'm sorry to hear that your Schamberg's is causing such frustration.  Have you had any joy with the naturopathy yet?

Like Lisa Marie my lesions were decreasing in number and severity until recently - I have a huge flare-up all over my legs now, which I am sure is linked to the heatwave we're having.  It's just depressing to have a flare-up during the season when you want to wear shorts and go swimming!  I'm not sure about swelling though, but if it's hot where you are then that's bound to have an effect on fluid retention and stuff.

Out of interest - do you find that exercise (I play badminton) helps or causes more lesions to form?

Anyway, best wishes to all.

Anna. x
Title: Re: Schamberg's?
Post by: Sunshine77 on Wednesday August 02, 2006, 02:17:18 PM
Update:
       I have fallen off the naturopath protocal while on vacation, am just getting back on it now.

      HOWEVER..... my spots are lessening!!!   YAY!!!! ;D ;D ;D

      What did I do??  I cooked beans...more than I needed and ate them 2 days in a row.  Then I started to notice that my aches and pains were diminishing.  Spurred on by this I decided to try a vegatarian diet.  IT WORKED!!!  My inflammation is greatly reduced!!  But along with that blessing I noticed that the "Schambergs" did not look so "angry."  So I have stayed with this way of eating and the red dots are gone, and I am so far left with the "blush" of Schambergs.  I do not know if this is a "fluke" or just so happens to coincide with a remission....but whatever it is I am staying with my new lifestyle!!!
      If you are wondering what the connection is...my GUESS (and I stress that point!!)is that Schambergs is the result of inflamation.  Google the medicine mentioned in one of the previous posts.  When I did, I believe the medicine is usually prescribed for gout, which is an inflammation.  There is also in one of the posts a link to inflammation of the gums.  Hmmmmmmmm...interesting, wouldn't you say??
      Now if any of you are already vegan...and this doesn't affect your Schambergs, please let us know.  This is just a theory....and I have NO medical background...but it seems to be working for me??
      If you decide to try this.....let me know and I can give you some awesome links that show you how to be a HEALTHY vegetarian!!! Don't want to trade one problem for another!! ;)
      By the way, since going "veg" There have been a number of people, books and websites that have supported the concept of taking meat out of your diet to ease arthritis(inflamation). 
     Please check this out for  yourself before you take the plunge!  Also this didn't happen over night...be patient.
     I am anxious to hear if this works out for anyone else. 

     Oh, by the way, if you are wondering, "Do I miss the meat?"
                                    NO!!!!

Good Luck, and please keep me posted!


Karen
Title: Re: Schamberg's?
Post by: glava88 on Wednesday August 09, 2006, 04:46:53 AM
Hi again...i hope everyone is doing ok...i'm getting sooo frustrated with this disease...My 18th brithday is comming up in a few weeks and it should be a happy time for me but it just reminds me how long i've had the disease for...going on 3 years...i first got it when i turned 15 now i'm 18...the past three years have been very emotional and stressfull...Like i said b4 i also have autoimmune neutropenia (low white blood count) i'm not sure if there's any connection...i've been to SOOOOOOo many doctors...hmm where do i start...when my spots first started i went to a few local doctors just to see what the heck the spots were...when i found out it was schamberg's my parents took me to University of Penn then John's Hopkins then Saint Christophers then Childrens hospital of Penn...every time i went to the doctors it made me more upset because they all said the same thing which is the HARDEST thing to hear...."NOOOO CURE"!!! and ohh my favorite "It just takes time"...well i'm sure u guys feel this way too but i'm getting very impatient...i'm thankful that what i have is benign but it still have caused alot of distress in my life...me and my parents decided to get away from tradition medicine and are now looking into homeopathy. I saw a naturopath and now i take alot of different vitamins and supplements that are supposed to help capillary fragility. I'm taking large doses vitamin C, bioflavanoids, multivitamins, billberry, and some more that i dont remember the names of...i also recently went to a homeopathic doctor and sat through a 4 hour appt...he gave me a remedy and i'm taking it too see if anything changes...if anything does i'll let you guys know...My legs are almost completely filled with spots and from the they've never gone away in 3 years...i'm not sure how some of yours are dissappearing and then comming back it seems like mine are there for the long haul which is very depressing
Title: Re: Schamberg's?
Post by: dolores on Thursday August 10, 2006, 10:17:55 AM
Hello all,
I've had Schamberg's for well over 3 years, it started maybe about 4/5 years ago when i got a small circular patch on my right leg, which slowly expanded, but i didn't really take much notice until others started appearing on the ankle of my left foot 3years ago. Since then it's spread much faster on my feet/ankles/lower legs. I saw a dermatologist 3 years ago who said the same old, and I've just had a second opinion recently(the same).  I've spent the last few years keeping my legs covered, even when i'm on my own because i don't really want to look at them, hence my lack of action, but now I'm almost 19 and I'm fed up!
I also get dry skin in the same area, but its not particularly itchy, and as above, I've not seen my marks come and go, they've just pretty much spread over the years (although sometimes they look brighter - has anybody else noticed this after alcohol?)

My doctor said that exercise might help - does anyone have any experience with this, does it improve of make it worse?

In answer to the post above, it's good to hear someone else is going through the same thing (well obviosly not good, i wouldn't wish it on anyone, you know what i mean!). My doctor said that it was due to the leakage of red blood cells, which couldn't be lasered because your white blood cells are the only things that can break it down, but the leakage is occurring at a faster rate than the white bllod cells can cope with - so possibly your low count is related?

I am hoping to start med school in september (fingers crossed for grades next week) and I am determined to get to the bottom of this! Keep me posted, I'm so glad I found this forum!
Title: Re: Schamberg's?
Post by: glava88 on Thursday August 10, 2006, 02:51:22 PM
thanks for the information Dolores...yeah i understand how fed up you are...i can relate because i'm pretty much just as young as you are...i also have dry skin and what i discovered is that Vitamin E Oil 24,000IU works best to keep your skin moisturized.... you can buy the oil in any drug store or in any vitamin shop...i'm not exactly how the spots react to alcohol but what i do know is they get worse when under stress and when i'm on my feet for a long period of time...goo luck in med school i hope you can do something to find a cure for this disease....i'm also entering pharmacy school this fall so i hope to do some research in the future to try and find a cure!
Title: Re: Schamberg's?
Post by: dolores on Friday August 11, 2006, 09:22:58 AM
Thanks for the tip, and good luck in pharmacy school! I also forgot to say that my doctor gave me the number for some specialist that provides make-up to conceal birthmarks etc. He said it would probably take ages to apply such a large area, but apparently it's designed to stay on for about 24hrs or so, and is waterproof so you can go swimming. I don't know if anyone else has had any experience with concealing their marks, but I'm gonna give it a go..maybe there's someone similar in your area?
Also someone above said they can't even wear black shear tights because their marks show through - mine do too, try getting some hoisery (Accessorize do a good pair) They seem to completely throw the eye off, despite having loads of holes in them.
Title: Re: Schamberg's?
Post by: North on Monday August 14, 2006, 05:31:17 PM
Hey everyone,

Ok I hope I can bring some good news................. my Schamberg's has totally cleared up for the first time in about 4/5 years. I didn't want to say anything before, but I haven't had any new lesions for over two months! I've also been taking a large dosis of vitamin C (for a different reason though) I have no idea if there is any relation between that and my lesions dissapearing.

Good luck everyone.

Greetz, Weena
Title: Re: Schamberg's?
Post by: ThomasDK on Wednesday August 16, 2006, 05:07:33 PM
Hi all

I have been reading in this forum for a while, and now i feel its my turn to add some informations/experiences.
I got this disease last year, so i have suffered of this for about 1½ year now.
It's pretty frustrating to have, and ugly too.

I will list my experiences below.

Good: Sunshine and fresh air on affected skin, cream whenever feeling dry in affected areas

Bad: Affected skin covered with clothes, swetting

So, while it's ugly and I really don't want to show my legs/feet, it helps getting a little tan, besides hiding the rash, the rash dissappears, this is good in summertime, but the rest of the year  :'(
I have a plan of trying with some tanning bed.
I have used steorid cream, it works, but isn't good in the long run i think.

Well thats all for now, hope you can read my bad english

Thomas (from Denmark)

Title: Re: Schamberg's?
Post by: Caspian on Wednesday August 16, 2006, 09:35:29 PM
Weird, weird, weird.  ???

I now know there is a link between hormones and my Schamberg's.  Just before my period (for about a week), the rash is particularly bad, but as soon as my period starts it subsides a little.  The rash slowly appears again as the month goes on, and the cycle starts again!

So..let's see...progesterone peaks just before the monthly menace....so perhaps it's linked to progesterone levels?  *puts on lab coat* I am going to investigate!

Clearly, this doesn't help male sufferers, but it's interesting nonetheless.

What have other ladies found?  Hormonal links or no?

 ;)

Anna. x
Title: Re: Schamberg's?
Post by: paulinybeany on Saturday August 19, 2006, 03:08:47 PM
Hi, I was diagnosed with granuloma annulare - started on both forearms years ago - then went away.  Came back last year - same place. Also have a circle of dots upper arm - never itchy or bothersome. Went to a derm who diagnosed Granuloma Annulare - prescribed  Clobetasol -
Seemed to get worse with that - now, lucky me, it has spread (doctors say it is usually localized).  They said it will not hurt me - Hard to believe because now I have it everywhere, legs, feet, knees, underarms, etc getting pretty scary. I never heard of Schamberg's - will research.  Good luck
Title: Re: Schamberg's?
Post by: sarahannette on Friday October 13, 2006, 08:05:50 PM
so im not sure if people check this often but i will share my story in hopes that someone will read it and find it useful.

i do not have insurance so i waited until my spots were a lovely, bright, reddish color before i went to the dermatologist. i was diagnosed with schambergs. the only thing i heard the dr say was it was caused by thin blood and then i burst into tears because he explained that there was no cure for this.

the dr advised me not to take anything containing asprin because asprin was a natural blood thinner. including advil, midol or pamprin (even alcohol became a HUGE no no). i considered advil to be one of my best friends!!! nothing else takes care of headaches for me the way advil does (i was taking at least 2-3 advils a weeks). the most incredible part of this was: i remembered that my previous cycle i experienced immensly painful cramps and i had doubled up on midol and advil through most of my cycle to calm my cramps. within a week of my cycle ending, my boyfriend pointed out that my spots were now covering both my legs entirely, they were spreading to my forearms, and they were this deep red color. it seemed every day that i woke up i found a new spot somewhere on my body.

i was given the same cream that it seems that everyone else has been given. i was skeptical about it, but i used it two times before i stumbled across this forum where everyone seems to agree that it does not help clear up their spots. so i stopped using it altogether

so i started thinking "if this is ultimately caused by thin blood, why cant i just reverse that and take a blood thickener?". as i already said i do not have insurance and could not afford to keep going to the dr and keep getting expensive prescriptions. so i sat out to find a "natural cure".

ive never been a "health nut", but i figured that if maybe i could change my diet somehow, then i could clear up my schambergs by using nutrients. i quickly stumbled across a site that stated that VITAMIN K was a "blood clotting vitamin". YAY! i didnt want to get too excited though... i didnt to be let down. i took it one day at a time, and told myself that if this doesnt work then i will move onto the next option.

next step was "where can i find vitamin k?". i found out that there are vitamin k supplements, creams and of course the foods that most of us see on a daily basis. i decided before i was going to buy supplements i would try food. tomatoes, broccoli, cabbage and many other foods contain vitamin k. i ate a bowl of cole-slaw (which contains cabbage for those of you that do not know) for breakfast, i had brocolli with my lunch, tomatoes with my dinner. my "in between meals" snack went from cookies, ice cream and chips to ANYTHING that had vitamin k in it. i more than tripled the recommended daily intake.

in only a few days i noticed a complete 180. no new spots were appearing. my old spots were fading (very, very quickly). within only one week my spots had improved more than 75%. the spots that were the biggest and the ugliest cleared up within one to two weeks. it felt like a miracle! the spots on my arms have completely cleared up, and the ones on my legs have faded drastically. they faded enough that i was comfortable wearing shorts on the last nice day of summer. now i dont eat so much of all those foods. i maintain eating about 2 tomatoes a day and a small bowl of cole-slaw a few times a week. i have noticed that if i miss a few days or run out of my vegetables before i can make it to the grocery store, my spots slowly start to get darker.

i know that increasing my vitamin k intake, not taking anything containing asprin, and skipping out on happy hour with my friends has DEFINITELY helped my case. i hope that this information can help every single one of you.

this is a site that lists a few foods that contain vitamin k, how much they contain and how much vitamin k you should intake
http://www.becomehealthynow.com/glossary/vitamin_k.htm

if anyone has any questions about something that maybe i have not covered completely please feel free to email me at email address removed

GOOD LUCK!
 
Title: Re: Schamberg's?
Post by: brianarose7 on Saturday November 25, 2006, 02:09:11 AM
Hi there.  Sounds like you have something very similar to what I have.  No itching. no pain, just ugly red marks all over. Mine are on my legs and a few on my arms.  Started on my inner knee and then got worse and worse.  What I was diagnosed with is Chronic Pigmented Purpura Dermatitis, I think it is a type of Shambergs.  It has been very discouraging because there is no treatment. I have researched this a little and steroids have been used but the side effects are worse than the disease.  I have also read that Vitamin K deficiency might be linked to causing this disease.  So I have started eating foods high in Vitamin K and also taking Flavanoids that help with Cappillary health.  Basically the doc told me that the blood vessels are bursting at the surface at the skin causing the red patches.  So vitamin K helps "thicken" the blood the prevent this.  I don't know though, I just started doing this so we will see what happens.  Also Arnica has been direcly on the skin to help lessen the redness but it hasn't helped me yet but I am trying, it can't hurt right!! 

Don't be discouraged, you are not alone.  I got this soon after my wedding in Maui and I have had this lingering feeling that the altitude during the plane trip messed with me and my circulatory system causing this.  But that is just my theory, who knows.  Let me know if anything eventually works for you.  If not, I guess we just have to learn to live with it even though it sucks.  it could be worse.  Good Luck

brianarose7
Title: Re: Schamberg's?
Post by: sarahannette on Sunday December 03, 2006, 02:01:49 PM
i hope this works for you. as for me, i can say that i DO NOT have one spot on my entire body.

i havent had any new spots develop in almost 3 months, and my spots completely cleared up about a month and a half ago. even the iron deposits left behind eventually faded. i am so excited because i took this really hard; not knowing if my spots would ever go away, if i would live with new spots coming up on a daily basis. my family and friends were literally shocked when they looked at my legs and saw no spots after only 2 weeks.

i would recommend that anyone with this diagnosis at least attempt the "vitamin k" diet... its so simple and for me it was so effective. i havent had to worry about maintaining my high vitamin k intake, and now i can take advil and midol again with no spots developing!!! i havent attempted alcohol yet, so im not sure if it affects the condition, but at least now i know how to reverse it. this is not something i will have to deal with for the rest of my life.

i hope that everyone finds this useful!
Title: Re: Schamberg's?
Post by: Sunshine77 on Sunday December 03, 2006, 09:11:51 PM
sarahannette:
     That is amazing!  I was having some luck with going "vegan", but now am beginning to think it was probably because I ws eating more food with vitamin K!  I am inspired by your writing, and will try my own experiment with eating more "vitamin K veggies!"
     Thank you so much!!!!

Karen
Title: Re: Schamberg's?
Post by: sarahannette on Saturday December 09, 2006, 10:58:55 AM
please please please keep me updated on how this works out for you!!!!!
i know without a doubt that vitamin k and me not taking medicine containing asprin cleared up my schambergs. there is no other explanation. all of my spots simultaneously cleared up.
im so anxious to hear how this works for other people.
i know how upset my diagnosis made me and i know how happy i was when i realized that i found something that worked, i hope that this works for you as well.

let me know how it goes!!!!
Title: Re: Schamberg's?
Post by: JETTA7474 on Monday January 01, 2007, 09:51:04 PM
Wow - it's nice to find a post where people are going through the same thing I am!  There is hardly any data out there about this frustrating disease!

I was diagnosed with Schambergs 2 years ago.  My dermo said that there is nothing I could do except try these lazer treatments which may not work.  I said yes - anytthing!  I did, and they are less red, but still very very noticeable. i only have them on my legs as of now but it is spreading.  Little dots every 2-3 months and one big one every 6 months. 

What are some homepathic treatments that work?  I want to ask my dermo about them.

What is interesting to me about this forum is that some people had the pepper dots go away?  They just dissappeared one day?  That sounds like it's not Schambergs or do I have hope that these will go away?  Explain more....  Not sure if I should schedule another expensive laser visit.

I feel horrible for people who have these dots that also itch.  So far, it's just been emotionally dibilitating and unsightly.
Title: Re: Schamberg's?
Post by: JETTA7474 on Monday January 01, 2007, 10:25:40 PM
also, most of the research I've done says it's more prominant in men.  I'm a 32 year old  healthy active woman, and while I wish noone had this disease - it is nice to know there are other women out there with it.  I was feeling very alone and freakish.

So - after readin all these posts.  Sounds like I will ask my dr. about
colchicine  - you take it orally?
add more Vitamin K into my diet - which I'm sure I proably do anyway

and hope the girl who is going to med school comes up wtih a cure... this is just SO awful to deal with.
Title: Re: Schamberg's?
Post by: spottedinct on Tuesday January 02, 2007, 08:08:46 PM
Hi- I'm so happy I found this forum!  I started with the spots at the end of last March- they looked like lines of a rash and looped in and around my chest, stomach, arms and legs- they didn't itch, but I finally went to the docs, who said it looked like classic pityriosis(Christmas tree rash) and should go away in 6 wks.-but it didn't and started to look worse, spreading out and getting darker with areas of little dark red dots, so I went back- she said, "No I was wrong"-and sent me to my dermatologist.  She said-Capillaritis- nothing you can do-heat, humidity and standing make it worse- and maybe it was a reaction to something I took.  So then I went back in July, after I had blood tests to ease my mind about other things it could have been.  She said the blood tests looked fine- I said,"does this rule out Lymphoma?"(that I had read about)-she said "no, you need a punch biopsy"- so I had one and it confirmed capillaritis, and she said that 3 other women of different ages had come in with the same presentation and same problem which led her to believe that it was being caused by a virus!
So I went on my way- but had to go to my gynocologist to see about having an ultrasound instead of a regular mammography-because I didn't want to make those spots worse- so she looked at me and was horrified- she even called me back to say she had talked with a derm. friend of hers who told her I should have my blood tested for autoimmune, liver,etc. and go for another biopsy.  Meanwhile I was going to a naturopath to try some sort of help and she also wanted me to have more tests.  So, I went back to my regular doc. and she brought in another doc to confer on the tests- so I had them and I don't have autoimmune!
Then I had to go and have another biopsy- the dermatoligist said that a man had just come in that had this for 6 months- anyways the biopsy still shows only capillaritis and she thinks I'm just off the bell curve.  So that's where I stand- Oh yes, the summer before this came out I had to big red circles on my stomach and a 103.9 fever-they gave me a lyme disease test(negative) but still took 3 wks. antibiotics.  Also the month before I got it I took remifemin(has black cohosh) for menopause symptoms ( I'm 47) for one wk.- I later found this is a blood thinner-so don't take.  Also during the first month of it I took fish oil and licorice root thinking I was doing this do get better(they are both blood thinners) Finally I had stopped all supplements for a few months- but nothing changed.  Then I went to naturopath and she is giving me normal multi. vit., lots of C, calcium, mag. and Zinc, and now flax and borage oil, and kyo-chlorrella and adrenal support and a tea of horsetail and bilberry.  I look worse than ever!, but now I see it could have been the alcohol I've had during the holiday season!    I now sit on a cusion- because those are the uncomfortable ones and also take a shower quickly without the lights on and dress fast- so I don't have to look at them as they disturb me and make me think I'm sick even though I guess it's harmless and I've been lucky not to have them on my face and neck.  Anyways I always show them to people to find out if anyone knows anybody or anything to help and everyone is horrified.  I also started to get happy when one out of hundreds started to go away- but now I notice more little spots appearing there.  It may be from standing in alot of check out lines!    Now I will try more Vit. K foods and I just found an article about Hydroxypyridones working for rosacea(which I also have) and this problem- but I don't know what that is yet.  I was also theorizing about menopause and hot flashes, hormonal fluctuations and this problem.  I wish there was  a study.  When I asked my derm. about what kind of virus this could have come from she didn't know and thought people just react differently because of genetics...well, thanks for letting me tell my story- I think even my family is getting tired of hearing about it, and it is good to know that it can last for so long- now I know it's normal for it.----Thanks!
Title: Re: Schamberg's?
Post by: dolores on Monday February 26, 2007, 09:44:31 PM
Hey all,
Wow, it's been a while, my spots are still the same - I think Sarahannette has really touched on something with the blood thinning. I know that my spots started to appear at the age I began drinking..and def get worse with alcohol..unfortunately! This Vitamin K thing sounds promising anyway, I'm going to have a go introducing more of these foods to my diet - I'd watch out for using supplements though, overdoses can cause serious liver problems! I had a look at the mechanism of clotting action in my pharmacology book and apparenty calcium ions are also needed with vit K for certain clotting factors, which is worth considering..but I think it's less likely people would have a deficiency in this.  Anyway, ace discovery sarahannette, I'll let you know how my new diet goes - it's going to be hard, I live in catered halls at uni that don't provide much dark green veg! And the alcohol thing...

Oh and by the way, I tried the camoflage make-up thing..it does cover it up fairly well..but I hardly ever use it cos it takes so long to apply and comes off on all my clothes despite the setting powder. Seemed to be waterproof in the shower, but I'm not brave enough to try it swimming in public!
Title: Re: Schamberg's?
Post by: miszphi on Tuesday April 03, 2007, 02:48:58 PM
wow I am so glad I found this website! I am a 14 year old  African American female. I have suffered from Schambergs for about 2 and a half years now. I hope it goes away one day. I am currently trying colchicine. I am also going to look into the vitiamin K. But my doctor said to not try them at the same time if you are taking supplements so I guess I am going to do it the more healthy way by eatting foods rich in v-K. Its getting close to the summer and im kind of getting neverous but its okay becuause this a cure out there somewhere and that there is HOPE. To everybody who is kind of depressed by this like me keep your hopes up and keep trying.

~philicia~
Title: Re: Schamberg's?
Post by: Repete03 on Monday April 23, 2007, 04:51:50 PM
I was diagnosed with this Schamberg's? also called chronic pigmented purpura by my hematologist/oncologist who saw me for many years. It is a very frustrating disease? This affliction began for me at the age of 7 and was a massive all over body breakout. It eventually regressed to just my lower extremeties but caused much embarrasment for me as a young boy. I would not wear shorts in public until my early 30's (I am 38 now). I still live with this thing...comes on as a bright red spot, varies in size, and eventually browns and fades after a long time. I also have not noticed any correlation between any life experiences and it's onset, only that it is not nearly as noticeable as it has been most of my life. I am grateful for that...I can now wear shorts in public. I do still get them, but getting sun on them seems to help. I feel for all of you afflicted with this mystery disease and share the frustration for the lack of treatment and understanding of it. It also seems to be a very loose diagnosis these days for something as rare as it seems to be. Just because you have spots of some sort does not mean that this is what it is! Some of you nailed it with your symptoms and I believe share the same affliction. Would love to hear/read more!!!
Title: Re: Schamberg's?
Post by: miszphi on Saturday May 19, 2007, 10:45:11 PM
yeah... I think sun does kind of help my spots I guess tanning seems to make them fade.
Title: Re: Schamberg's?
Post by: green on Friday July 06, 2007, 01:22:50 AM
Hi everyone. When I was first diagnosed with Schamberg's I poured over websites looking for alternative therapies to treat the condition. I did not find any info on the web, but I did find my cure. Not sure if it will work for everyone, but it worked for me and I wanted to share it with everyone out there. I have written a lengthy description of it on my blog but in short it was bioflavonoids. Read more here.

http://www.bigfluffyclouds.net/display/ShowJournal?moduleId=1406186&categoryId=120225
Title: Re: Schamberg's?
Post by: helene01 on Friday August 31, 2007, 05:33:01 PM
Hey all.

A couple of months ago i went to the doctors with what i thougth was just a mild dose of eczema. I had dry areas of skin on my left leg..but the worrying thing is i had a concave red patch on my right knee. The doctor diagnosed me with ringworm. He prescribed me Lamisil cream and said the rash should clear up in a couple of months. However it did not....i kept buying Lamisil at a pharmicists as i go to college so i couldnt keep leaving lessons to attend doctors appointments.

The patch on my knee went about 2 months ago. However the dry patches of skin would gradually fade to a brownish colour which i thought was a sign of healing. However about 3 months ago i noticed red spots appearing on my shins.I only had perhaps 5 spots at first then it started to spread around my ankle and onto my other leg (although this leg is not as bad). I also used to get chronic aching in my lower legs and aching around my knees which apparently was due to bad circulation. The rash is only on my lower legs and ankles...and its at the back of my knees..i just hope it doesnt spread anywhere else!

Anyway i decided the doctor was wrong! so i researched on the net and found i had all the symptoms of schamberg's disease. Yes..i'm devastated as there's no cure.

So yesterday i went to the doctor and he basically did not know what to say. He said he'd seen nothing like it and did not know what it was (that makes me feel a whole lot better!) and he's supposed to be a specialist in skin rashes. So i told him about my research and he looked it up on the net with me and was surprised. He said 'i've never heard of schamberg's disease' and was surprised that its a rare disease. He's referred me to a dermatologist but i may not get an appointment for 3-4 months so im hoping it does not spread rapidly.

So ive purchased some 500mg vitamin c tablets but after researching on the net...apparently it thins out the blood?

So ive now decided to try out taking large amounts of vitamin k by eating certain foods.....and ill keep you posted on how it helps.

I just feel so frustrated.....and distressed.

Another thing is that on a website it said schamberg's disease may be caused by a virus...well ringworm which i had on my knee is a fungal infection so im wondering whether this may have caused it (although i would have thought schamberg's would have cleared up after getting rid of ringworm :S). I also read that exercise may be the cause which ive been using an exercise machine to work out....so im going to give up on exercising for 2 months to see if there's any improvement.

I suppose i'll just have to eliminate all factors 1 by 1....

Title: Re: Schamberg's?
Post by: dgranny on Tuesday September 11, 2007, 07:52:10 PM
I was diagnosed with Schamberg's a week ago. I'm 69 years old, and have never had any skin problems. There was somewhat of an itch the first few days, then the blotches that looked like hives. After a couple of weeks I went to my dermatologist, & he diagnosed it immediately. I was shocked to learn I had a DISEASE! and that it would pretty much be permanent. I had originally used a vinegar & water foot soak & thought that might have caused some cell damage, as my feet looked burnt and extremely dry to the level of the "soak".
My doctor didn't think there was anything to that, but that he had seen it brought on by the type of diauretic I had been on for years! I thought by getting off this medicine the rash would clear up, but no such luck. It now covers the entire front of my calf, with blotches all around the back.

I had no problems before the vinegar soak. Has anyone out there heard of a connection from this?

dgranny
Title: Re: Schamberg's?
Post by: sunshinegirl on Friday September 21, 2007, 10:48:34 PM
Hi

I have had my spots for 7 or 8 months now and like everyone else didn't bother seeing anyone for about six months because there is no itching.
Mine faded significantly over winter but are coming back now with a vengeance (just in time for summer - yay!) I haven't noticed any particular diet or other causes, but I am going to give the high vit K thing (low alcohol  :(  ) a go.
Just for interest, last summer (Nov-ish) I tried one of the new tanning moisturisers on my lower legs, vanity finally struck and I wanted to wear 3/4 pants without white legs hanging out the bottom. It was only after this that the Schamberg's showed up. I also have a friend (male) who tried it last year and he has also developed Schamberg's!!?!??!?!!? Has anyone else seen or heard anything like this?

Anyway it was wonderful yesterday to read all the tales so similar to mine and to learn of a natural possible help. So Thanks!

Clare
Title: Re: Schamberg's?
Post by: helene01 on Sunday September 23, 2007, 06:28:41 PM
Just to let you guys know...

i purchased some vitamin k cream..and my spots are gradually getting smaller and less purple/red.

i tried the vitamin k diet which started to work but i hate most of the foods so i gave up.

and thinking about it....i tried some moisturising tanning cream..so maybe theres some connection.
Title: Re: Schamberg's?
Post by: spottedinct on Thursday October 18, 2007, 04:19:55 PM
Hi- I've had what my derm. calls "an over the top" case of capillaritis for almost 2 yrs.- I've tried many things and have just finished 2 mths. of super bioflavanoids(mentioned in big fluffy cloud site)- when I ordered them from Rockwellnutrition.net or .com, they invite you to email with nutritionist there to help with your problem- I got an email right back with recommendations- which I followed and she will be checking up on me.   Of course, so far- it hasn't worked!  but maybe it will take a few more months-
I have them really bad on my right leg but also they are all over except the neck and face.  I really have to concentrate on the vit. K eating thing and see what happens then!
Title: Re: Schamberg's?
Post by: helene01 on Saturday October 20, 2007, 01:40:36 PM
Well just to inform you of my progress...or no progress lol

The vitamin k cream which i purchased off the net does actually help to reduce the size of the spots and fades them. It also helps clear up the rusty patches i have. But as im getting rid of some patches...the rash is spreading..so now its not only on my shins but its working its way up to my knee caps and the back of my legs  :'(

Anyway ive just ordered some vitamin k capsules offline....im convinced vitamin k is the answer lol.

I have my dermy appointment next week....i havent yet been diagnosed with schamberg's but i know it is schamberg's so tbh i think itll be a wasted journey. But i need to have a blood test to see whats actually up with me.

I also noticed....stress plays a big factor in the rash spreading. If i stress the day before about my legs then the next day itll be bright red/purple-ish colour. So i reckon hormones could actually be playing a part and for the women: whenever im on my period it really does flare up..so again..must be to do with hormones.
Title: Re: Schamberg's?
Post by: texas mama on Friday October 26, 2007, 01:56:17 AM
today my dermo said i have Schaberg's.  prognosis seemed pretty glum.

2 mos ago, i thought it was a patch of poison ivy, as i had been crawling in the foliage to put up Xmas lights.

about a week later, if formed a perfect circle, did not itch.  I showed it to a pharmacist, and several pediatrician friends, who all said ringworm.

i got over the counter fungicides, which didn't change it at all, so today i went to the dermo.  He said Shamberg's and just gave me some cortisone cream.  which probably won't do anything.

looking up Schamberg's on the net, my mark looks nothing like it.

It is red/magenta, not orange/brown

it does not itch., has almost no feeling.

it is raised up from the skin in a circle, about 2.5" diameter.

No other marks anywhere.

It is on my calf, and "dotted" like the descriptions.  I'm a 45 yr old female.  no one in my family has had this.

I'm getting a 2nd opinion monday.
Title: Re: Do You Have Schambergs?
Post by: texas mama on Friday October 26, 2007, 02:03:13 AM
    Hi To All With Schambergs,
         My daughter was diagnosed with Schambergs and I have some questions. Did most of you get blood work done? Someone has mentioned the high Vitamin K diet. Have others tried it? Results? Has anyone out there gotten pregnant with Schambergs? Did it get better during pregnancy or worse? What's up with the leg pain? From what I'm reading it shouldn't ache? Is this untrue? Has anyone gotten it on their face? Again, the literature says no, but I want to hear from patients!   thanks so much!
                                                                           Texas Mama
Title: Re: Schamberg's?
Post by: helene01 on Friday December 14, 2007, 05:06:32 PM
Well noone has posted in this topic for ages...so i will

Texas Mama as far as i know Schamberg's does not affect pregnancy. Ive not heard ofanyone getting it on the face..and to answer your question i did have aching in my legs until i read somewhere that it is psychological and since then i have convinced myself it is and the pains have stopped.

Anyway i shall tell you of my visit to the dermatologist (what a complete waste of time!). In the uk you have to be referred by your doctor and have to wait months for a free consultation - i waited 3 months for mine.

Anyway the woman knew what it was (just like i had predicted -schamberg's) but i her exact words 'could not remember anything about it' so the whole appointment was pointless. She said theres no cure etc and didnt tell me anything new, just to keep taking consuming lots of foods with vitamin c.

So i purchased vitamin C tablets and they have had no effect. Now i did try the vitamin k diet but could not keep up with it as the foods were boring and i saw no difference. So i thought ill purchase vitamin k tablets instead (they dont sell them in stores around here) from the net...i tried them and they made no difference.

So looks like my quest for finding a cure is still on. Also i just wanted to ask other people who have schamberg's:

Do yo find that you are cold alot? and do you pick up colds and flu easily? because im always cold, im always ill so im puttin it down to the fact my blood is messed up.
Title: Re: Schamberg's?
Post by: miszphi on Sunday December 16, 2007, 04:52:18 PM
hey i was on that big fluffy clouds blog and was reading a comment that someone had posted "

When I was diagnosed with shambergs and told it was incurable by a member of the AMA. I looked elsewhere for a cure and found an inexpensive one that works for me.

After research, I discovered that schambergs has 3 stages that lead to the red rash on the skin. So my treatment includes treating those three stages.

1. Thicken the blood so it won't pass through the weakened capillaries to the surface of the skin. Diet included Vitamin K foods. Ate spinach, mustard greens, turnip tops, etc....
2. Strenghthen the fragile capilaries with plenty of Bioflavinoids. Took vitamin C with biofavioids twice daily. Also would ocassionally eat the white pulp of lemons, oranges, grapefruit, etc... which are sources of bioflavonoids.
3. A month after doing step 1 and 2 I took the advice of my massauge therapist and treated the surface rash with caster oil packs. She thought the oil would stimulate the lymph system to flush out the toxins and red pigmantation. It worked. The caster oil,also known as the Palm of Christ, does work to stop the imflammation. I soaked flannel in caster oil and applied it to my legs about five times for two to three hours, while elevating my legs.

I teach high school art and had considered retireing because the long hours of standing on my legs had made the red spots worse. Once again I can stand all day. My legs have cleared up except for the faint first spot that appeared on my leg 4 months before I had gone to the dermatologist. I should have gone sooner, instead of trying to treat the skin rash with products that did not work.
Things that didn't work:
If I had known it was Schambergs I never would have treated the first spot with Vitamin E, because E thins the blood and contributed to the problem of the blood running through the capillaries. Neither Emu oil or cortisone creams helped control the problem.

Visited The dermatologist today and told him my three part solution. He said to definately keep taking the bioflavonoids combined with Vitamin C every day and that he had heard about the miracles of caster oil.

Title: Re: Schamberg's?
Post by: koes0030 on Saturday March 01, 2008, 05:45:46 AM
Hi all,

I just stumbled on this forum last night when I was doing research online... I was recently diagnosed with Schambergs disease.  Fortunately my dermatologist was able to identify it right away... but I was very disheartened to learn that there isn't any effective treatment.  my doc recommended that I take large doses of Vitamin C, which I have been doing without success.  I currently have two spots of Shambergs.  One is on my shin, and another is behind my knee.  Both started small but have been getting progressively larger.  They seem as if they shift or float around.  With spring fast approaching, I'm getting fed up.  So I was really happy to find this site.  I am planning to try a diet with more vitamin K, and also vitamin K creams to apply to the spots.  I know this is no guarantee, but I'm so happy to have a little bit of hope!  Thank you all so much for the info you have provided here.  I will post back with my progress!!
Title: Re: Schamberg's?
Post by: luigilula on Thursday March 20, 2008, 04:56:04 PM
I have not received that official diagnosis though I am absolutely positive that this is it.  I first noticed it in 1996 as a speckled area on my calf.  As of today it is pretty thick and beginning to show up above the knees. 

I have poked my head into this forum over the months (years?) to see if anything new was going on, being tried, etc.  I am going to try the Vit. C/bioflav. & castor oil thing to see what happens. 

I 'know' being on my feet alot (nursing) has not helped.  My legs swell easily (the cardiologist said it wasn't my heart but probably internal vericose veins) and of course the blood pools then leaks into my skin.  Viscious cycle.

The attached photo is dated wrong but is within the past couple years.

(http://i153.photobucket.com/albums/s230/luigilula/IMGP0380.jpg)
Title: Re: Schamberg's?
Post by: sunshinegirl on Friday March 21, 2008, 03:31:10 AM
Hi

Just a quick update. 6 months ago my Schamberg's was increasing (late winter / early spring) I started to include lots of vegies (plenty of celery sticks) and now have no patches at all. It may be co-incidence, but thought I would share my success.

Clare
Title: Re: Schamberg's?
Post by: miszphi on Thursday April 10, 2008, 03:03:50 PM
hey haven't posted in a while.

So i tried the colchicine and didn't see much difference. Although i saw fewer red spots i still had the dark ones.

Has anyone else found that they tend to bruise easily?? I had gotten a bruise like 3 weeks ago and i still seem to have it. It is also still sore!

I am taking HI-BIO-C supplements that contain 500mg of vitamin c and citrus bioflavcomplex. Also they have rutin and hesperidin in them. I have took them for about 2 weeks. They seemed to have faded a little but that just might be my imagination. I have heard that supplements take time so I'm not rushing.

I am about to start the vita-k thing since a lot of people on this forum have had much success with this clearing up the disease.
Title: Re: Schamberg's?
Post by: koes0030 on Friday April 11, 2008, 02:42:04 AM
I have found that I bruise easily too... I never used to as a child, but I totally do now as an adult.  I've been wondering if this and the Schambergs are related... schambergs = weak capillaries = bruising... maybe?  I also have some bruises that have taken an insanely long time to fade.  I have one spot where I really clobbered my calf against the car door... I can still see a faint mark a year later!

I have been trying vitamin C for the last 2-3 months, and have also been trying Vita-K cream.  Two of my spots are fading, but my biggest one is being more persistent.  I have a hunch that the Vita-K cream has been helping more than the vitamin C.  I was recently told by my doctor to stop taking the Vitamin C because it is causing me stomach troubles... so we'll see what happens with just the Vita-K.
Title: Re: Schamberg's?
Post by: sarahannette on Thursday April 17, 2008, 10:23:34 PM
so, i havent posted in here in quite a while. i just wanted to update everyone.

well, my life has returned completely to normal. i have gone back to using advil and midol (instead of just tylenol, what a relief!!), i am capable of enjoying happy hour more and more often, and i have yet to have anymore SERIOUS spots show up. i have had a few pop up on my legs in the past few months (and THE ONLY ONES since my original spots faded well over a year ago!!!!). when i noticed a spot on my knee and one on my foot, i immediately headed to the store and bought and overstock of tomatoes. within a few days they were gone, and still are. i am having a garden themed wedding next month and i feel completely comfortable knowing that i dont have to worry about having unattractive spots showing up.

i see that a few people have had luck with increasing their vit-k intake. how is that going for everyone now? is it still working, not working well enough or fast enough?

i just cant understand, for me it was so simple to clear this up. it seems to be helping with others as well. why dont dermatologist at least suggest a change in diet?

anyways, i hope everyone is coping well with this. i would love to hear updates!!
Title: Re: Schamberg's?
Post by: nance on Wednesday May 07, 2008, 02:03:31 AM
I've recently experienced a bout with Scamberg's on my legs which my dermatologist called "the worst he's ever seen" and basically gave the same prognosis as other folks have reported on this thread.  Out of desperation  (the itching was torture), I began reading all I could find about this disease on the web.  I quickly found that virtually all the information from "traditional" dermatology sites offered about the same info. "We don't know what causes it and we don't know how to cure it, lesions are benign... here's some topical corticosteroids, let us know how things progress".

My lesions have all but disappeared now and, knowing how miserable I was, I wanted to share what I did.  I have no idea whether any of these are responsible for helping, but something worked. 

I have been taking good quality probiotics (Primadophilus Optima), Quercetin (500 mg.), Esther C (500 mg.) along with my normal multiple vitamin with breakfast.  I also take an Alfalfa tablet for Vitamin K.    At lunch, I just take the Alfalfa and have increased vegetables high in Vitamin K.  Then with dinner, I again take 500 mg. Quercetin and 500 mg. Esther C and the Alfalfa.

Initially, I attempted to use the prescription corticosteroid cream (Triamcinolone Acetonide Ointment)  sparingly, but the Doctor said to use it liberally.             

Within a week to ten days of doing all this, the lesions began to lighten and within the next week they were all but totally gone.  Thank God, what a relief.

I'm not recommending this regimen to anyone, if you should want to try it, be sure to clear each of the ingrediants with your doctor before taking them.  I hope this helps someone, Schamberg's is a miserable disease.
 
Title: Schamberg's?
Post by: lari_iacob on Friday June 06, 2008, 06:49:58 AM
Hi all of you!My name is larisa and i am from Romania.I think i have schamberg also but i am not quite sure!So, i am begging you ,pretty please post some photos with your lesions so if i can see if they ressemble mine!I have read all of your messeges and i am quite desperate in thinking that they will last for such a long time!So i am waiting to see some photos to ease my mind.I will try to post some of my own. i got my first lesion 2 months ago:(and i have lots of them on my legs and a little one on my hand :( :-[Please help me with this problem :'( :'( :'(
Title: Re: Schamberg's?
Post by: nance on Wednesday June 11, 2008, 10:59:27 PM
Larisa,

There are some pretty good photos on this web site.  Hope this helps.

http://www.google.com/imgres?imgurl=http://www.dermis.net/bilder/CD008/100px/img0080.jpg&imgrefurl=http://www.dermis.net/dermisroot/en/24815/diagnose.htm&h=100&w=100&sz=2&tbnid=xWTmgmlzD_IJ::&tbnh=82&tbnw=82&prev=/images%3Fq%3Dschambergs%2Bphotos&hl=en&sa=X&oi=image_result&resnum=1&ct=image&cd=1
Title: Re: Schamberg's?
Post by: koes0030 on Thursday June 12, 2008, 12:21:57 AM
Not as many pictures on this website, but this seems to have pictures of less severe cases.  It also has some good descriptions of the different variants.  My spots look like the one on the ankle, and I was diagnosed with Schambergs.  Good luck!

http://dermnetnz.org/vascular/capillaritis.html (http://dermnetnz.org/vascular/capillaritis.html)
Title: Re: Schamberg's?
Post by: lari_iacob on Friday June 13, 2008, 06:05:38 AM
Thank you very much for your answers.The thing is that my lesions aren't so widespread.They look like round patches.I went to the doc and he told me i have a rash but it isn;t because they don't blanch with pressure and i have had them for a long time now.I don't know how are your "schamberg's" but mine in the morning are like orange coloured  and if i get strong emotional stress looks like new blood burst in the areas and they become red.does any of you experience that also?Can someone tell me if they have round,like circle lesions?And why are them like that? ???I am so happy i found this forum.i thought i was the only one. :'(
Title: Re: Schamberg's?
Post by: koes0030 on Friday June 13, 2008, 09:37:06 PM
My spots are more like you described, and aren't as widespread as in the photos either.  They are kind of round patches, but they occasionally shift around if that makes sense.  One is maybe 2"x2", and one is maybe the size of a dime... pretty small.  I have noticed that in the morning they seem more orange colored, but after I work out or stand around for a long time, they get more red.  Are your patches solid, or do they spread out into more of a ring-like shape?  If they are ring-shaped, there is a type of Shambergs called Majocchi or something like that.  Nobody seems to have any idea why patches become shaped the way they are, or why they appear in the first place.  Pretty frustrating  ???
Title: Re: Schamberg's?
Post by: lari_iacob on Tuesday June 17, 2008, 07:26:45 PM
i don't know what do u mean by solid?They are lillte dots clustered toghether!so they are not solid patches!went to a derm she said eczematida purpuric after i went with a series of blood analysis such as full blood count  and other to see if any infections are present and all seemd allright!she suggested a looot of vitamin c and keeping my legs up as much as i can!when i asked when will they dissapear she sighed...not a very promising answer...and also disturbing:(hope to hear from u guys!!!some myracle therapy or something:) :-* :-*
Title: Re: Schamberg's?
Post by: koes0030 on Tuesday June 17, 2008, 11:50:28 PM
Sorry I described that kind of badly... mine are lots of little dots clustered together too.  They look kind of like blotches of red pepper spots, so they aren't really solid... but the spots are clustered together in one general area.  The Majocchi type spreads outward over time, and I read that sometimes the inner spots start to fade, so it ends up looking like a ring of red speckles.  My doc also suggested I take a lot of vitamin C, but I had to stop because it was hurting my stomach.  While I was on it, it didn't help much if at all.  Some other folks have posted that eating a lot of vegetables and foods with vitamin K seems to help.  But sadly it doesn't seem like anybody has found a miracle therapy.   :(  I keep looking back here every few days just in case somebody discovers something!
Title: Re: Schamberg's?
Post by: dead_bird19 on Wednesday June 18, 2008, 01:19:42 AM
I found this forum a few months ago and have finally decided to join and share my story with you all...sorry it took me so long everyone!!!

I started getting shamberg's when I was 15.  At first they were little red dots that appeared on my stomach...they then moved to my back, arms and legs.  At first I thought it was just a rash (even though it wasn't itchy) but finally after showing them to my parents they took me to the doctor and then the dermotologist.  The dermotologist told me it was a virus that would disapear by itself within 3 months and of course I was relieved...until a year passed and I still had them.

So I went back to the dermotologist and he told me that he had made a mistake and that I actually had Schamberg's...and that there was no treatment for it. 

I am now 20...since then it has disapeared from my back and arms and most of stomach however it is still on my upper and parts of my lower legs.  At the moment they look like they might be clearing up...I have tried Vitamin K supplements recently and I'm unsure if this is a result...these legions have given the appearance of disapearing before and coming back months later :( I'm thinking of trying something different maybe...I found this site yesterday.

http://www.herbal-treatments.com.au/herbs_schambergs_disease.html

I'm sceptical about the treatment...but I found the information on rutin interesting...I went to the health food shop to get some supplements yesterday but I couldn't find any...I'm thinking about ordering it online.  I just thought I'd share with you all, maybe someone has already tired it??? 

But I'm very interested in what nance did!!!  I'm thinking I might try that as well.
Title: Re: Schamberg's?
Post by: lari_iacob on Wednesday June 18, 2008, 08:28:37 AM
Koes would you be nice to take a picture of your lesion so i can see how it looks like.Because after all i read i am really curious to see if they in any way ressemble mine!I would really appreciate it :-*
Title: Re: Schamberg's?
Post by: lari_iacob on Wednesday June 18, 2008, 08:34:55 AM
Or anyone else...who is nice enough... :)
Title: Re: Schamberg's?
Post by: Rachellia on Wednesday June 18, 2008, 07:10:14 PM
Hey everyone! I'm new here. I'm a 25-year-old female who was diagnosed with Schamberg's (via punch biopsy) 4 years ago, at age 21.

I had a massive outbreak that covered me in 3" diameter, starburst lesions from the waist down. My dermatologist said I was the first case she'd seen since 1976, and that there was no treatment. All the lesions spontaneously cleared after about 2-3 months.

Now, more than FOUR YEARS later, just when I thought I might be home-free, two, smaller lesions have cropped up on my butt and ankle. It's been about 3 days and they haven't gotten bigger (about 3/4 inch now) or more numerous, but I'm worried about what I will see over the course of the next month.

That said, I have a few questions for my fellow sufferers:

On average, how long do your outbreaks tend to last and how long do you tend to go with clear skin until another outbreak?

Were subsequent outbreaks less severe than your first?

Did you ever just have a spot or two at a time that never worsened/spread?

Lastly, have any of you women experienced clearance after going off birth control?

I've been on it for 9 years and feel it's done lots of odd things to my body. I am going off in two months and praying this stuff will vanish. For the record, I don't smoke or drink AT ALL, I'm a vegetarian, I'm on no other meds (OTC or otherwise), and I am a healthy weight.

EDIT: I'm making a new, question thread out of this.
Title: Re: Schamberg's?
Post by: lari_iacob on Thursday June 19, 2008, 11:08:03 AM
PLEASE SOMEONE POST SOME PICTURES! :'(I DON'T FIND IT EMBARASSING...I WON'T SEE YOUR FACE OR SOMETHING...PLEEEASE :'(
Title: Re: Schamberg's?
Post by: Sunshine77 on Thursday June 19, 2008, 05:13:08 PM
  It has been a while since I have posted here, so will fill you in on my progress.  I went to a Traditional Chinese Dr. and had accupuncture.  The spots disappeared.  Could not afford to keep going.   Spots came back. Then after a while I was introduced to "smoothies."  I would put a mango and a handful of spinach or romaine lettuce in the blender and make my smoothie.  After a few days my spots started to lighten.  Have not kept up the smoothies as I was on vacation, but intend to start.  In the meantime, I have joint and muscle pain.  It was mentioned to me to cut out gluten.  When I googled what gluten does to the body I found out that it creates a vitamin K deficiency.  I am curious how many of you are possibly gluten sensitive.  Do not assume you are not because you don't have digestive problems.  You would have to google "gluten symptoms" to see what a wide range it covers.
   Anyhow....if you are interested...it could be a possibility. ????????
Karen
Title: Re: Schamberg's?
Post by: koes0030 on Saturday June 21, 2008, 05:29:28 AM
Lari- I will try to take some pictures for you this weekend! 
Title: Re: Schamberg's?
Post by: koes0030 on Sunday June 29, 2008, 05:53:37 AM
I tried to take some photos of my biggest spot... they didn't turn out though!  Sorry... the spot on the front of my calf looks very much like this spot I found on the internet.  This is most definitely not my hairy ankle :)  Sorry I wasn't able to get any pictures of my actual spots.

http://dermnetnz.org/common/image.php?path=/vascular/img/capil4.jpg (http://dermnetnz.org/common/image.php?path=/vascular/img/capil4.jpg)
Title: Re: Schamberg's?
Post by: lari_iacob on Wednesday July 02, 2008, 08:22:21 AM
Thank you for your answer and photo...My lesions are similar to the one in the picture,but my question for you now is:what colour are them?Because some of mine are quite red and others more orange?If they are normally red in the beggining after how much time do they turn to orange? ???Can somenone answer me?Thank you
Title: Re: Schamberg's?
Post by: roops22 on Monday July 07, 2008, 10:33:12 PM
my derm said i have schambergs as well.  gave me this creme
(http://img.photobucket.com/albums/v60/roops22/IMG_0116.jpg)
which isnt doing anything.

he wants me back at the end of the month where they may do a biopsy. here are my pics,
i had them last summer, its seems to have gotten worse since then.  is this indeed schambergs  purpura?
(http://img.photobucket.com/albums/v60/roops22/IMG_0118.jpg)
(http://img.photobucket.com/albums/v60/roops22/IMG_0117.jpg)

i am a 34 yr old male.

thanks

rob

Or anyone else...who is nice enough... :)
Title: Re: Schamberg's?
Post by: lari_iacob on Tuesday July 08, 2008, 05:53:03 AM
Yes it looks like mine.I can tell the real colour though from the pictures.My lesions are brown red-orange and they seem to fade in the morning but gain the redish colour during the day. I have tried to take a picture but my camera doesn't do a great job:(The pigmented areas have little dots in the center and borders:(I am trying a pentoxifilin treatment right now,..We'll see if it helps in any way.Thank you for your reply and your photos,hope to hear from u guys soon :-*
Title: Re: Schamberg's?
Post by: lari_iacob on Tuesday July 08, 2008, 07:14:11 AM
I guess the biopsy idea scares you:(I am sure that everything is ok for u.I am really glad u joined us.O...And are your lesions only on the lower legs,below the knee?Do they change colour when for eg you take a hot bath?I know that they are very distressing these marks :'(I am 24 :'(and i have to wear pants all the time,and in 2 weeks i am going at the seaside...and i am so embarassed :-\
Title: Re: Schamberg's?
Post by: roops22 on Tuesday July 08, 2008, 11:39:26 AM
i had bloodwork done, the biopsy doesnt scare me.  they are only on my right leg, below the knee.  i still hit the beach, the more of a tan i get, the less u see them  ;D they dont change color at all...

I guess the biopsy idea scares you:(I am sure that everything is ok for u.I am really glad u joined us.O...And are your lesions only on the lower legs,below the knee?Do they change colour when for eg you take a hot bath?I know that they are very distressing these marks :'(I am 24 :'(and i have to wear pants all the time,and in 2 weeks i am going at the seaside...and i am so embarassed :-\
Title: Re: Schamberg's?
Post by: roops22 on Wednesday July 09, 2008, 12:24:02 AM
take some pics please

. I have tried to take a picture but my camera doesn't do a great job:(The pigmented areas have little dots in the center and borders:(I am trying a pentoxifilin treatment right now,..We'll see if it helps in any way.Thank you for your reply and your photos,hope to hear from u guys soon :-*
Title: Re: Schamberg's?
Post by: lari_iacob on Wednesday July 09, 2008, 06:27:33 AM
I will try to take some photos but they appear blurry.What kind of bloodwork have u done?I've done some myself but maybe they are not conclusive ???
Title: Re: Schamberg's?
Post by: roops22 on Wednesday July 09, 2008, 12:48:10 PM
honestly, im not sure. when i went to my primary care doc, he didnt know what it was, so they took blood.  i guess its whatever the routine bloodwork is..

I will try to take some photos but they appear blurry.What kind of bloodwork have u done?I've done some myself but maybe they are not conclusive ???
Title: Re: Schamberg's?
Post by: lari_iacob on Thursday July 10, 2008, 03:31:34 PM
This is a close up of one of my lesions...some of them are just like 3-4 petechiae grouped toghether ,others are largersome are red,some are orange,,,
Title: Re: Schamberg's?
Post by: roops22 on Thursday July 10, 2008, 04:38:18 PM
are they all over your legs?  yours dont seem to be as bad as mine  :'( you need to get some color on that leg, it makes them not as noticeable

This is a close up of one of my lesions...some of them are just like 3-4 petechiae grouped toghether ,others are largersome are red,some are orange,,,
Title: Re: Schamberg's?
Post by: koes0030 on Saturday July 12, 2008, 02:56:52 AM
Sorry it has been a few days since I have been able to check back.  The pictures that both of you posted look very much like mine!  Mine have been similar in size to Rob's, with the same kind of cayenne pepper spots that both of you have.  With regards to color, they start off red/brownish, but as they start to fade they turn more of an orange color.  I have had some that come and go within a few weeks, but I have had a big one on my calf that has been there for nearly 2 years now!! :(  So the length of time seems to vary quite a bit.  All of mine have been on my legs... I had one small one on my thigh, but the rest have always been below the knee. 

I feel your pain Lari... it's really difficult in the summer months!  It's so darn hot out, but it's embarrassing to show off my legs.   :'(
Title: Re: Schamberg's?
Post by: roops22 on Saturday July 12, 2008, 09:56:41 PM
mine look to be fading, at least the ones on the back of the leg.  i will keep using the creme, and when i see the derm at the end of the month, i will ask about the vitamen k stuff
Title: Re: Schamberg's?
Post by: Joan on Friday July 18, 2008, 03:02:24 PM
Dear Antischam,

I am a 46 year year female and just 3 weeks ago was diagnosed with Schamberg.  I read your post and was inspired wth your story and the information you shared.  I see that your lasting posting is more than 2 years old.  How are you doing, are you still taking the Colchicine drug?  I would very interested to hear from you, thank you!
Title: Re: Schamberg's?
Post by: Joan on Wednesday July 23, 2008, 12:09:36 PM
Thx for sharing your story regarding Schamberg's - I was diagnosed about 4 weeks ago with Schamberg's and share everyone's frustration and distress.  In doing some research on the caster oil packs - its says that it should not be directly applied to the skin - it sounds like you applied directly - is this still working for you? I would really appreciate any additonal information you can provide.

Thanks Joan
Title: Re: Schamberg's?
Post by: alc761 on Sunday July 27, 2008, 10:26:45 PM
Has anyone had this Schamberg's disease go away and if so, what helped and what hurt it?  I was just diagnosed with this and it is so depressing!  I have red dots all over the bottom part of my legs.  im praying it was a medicine reaction from the topamax I have been taking for over 2 years for prevention of migraines.  I have quit taking it and Im hoping this rash will go away. 


Thanks, Amber
Title: Re: Schamberg's?
Post by: roops22 on Monday July 28, 2008, 10:08:05 PM
here is my update, i have been using the creme and it doesn't seem to be doing anything, if anything the tan i have been getting at the beach makes them look less noticable  ;D however, i asked him about colchicine, and he said it has numerous side affects(1 being bad diarrhea :o )  and wont work for everyone.  im glad i asked him though, im down to the creme one time a day, and he wants to see me in 2 months.  im going to vegas around that time, so i hope they will be gone or not too noticeable by then.


http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf  (http://www.einstein.br/biblioteca/artigos/Vol2Num3/Novo%20Trat%20Bem-sucedido.pdf)  (with pics before-after)

YOU MUST READ THIS!!!!   I showed this text to my doctor and he liked it. The article is about the colchicine.

Im taking colchicine and im getting well, (not so fast like the woman in this article) and saying goodbye to my spots (before the treatment, they have reached my right arm!). I decided to post because i want to help everyone :bighug: and spread this new amongst the unlucky schamberg's  carriers! Please try!! 

Ps: Sorry about my poor english...


Title: Re: Schamberg's?
Post by: lari_iacob on Thursday September 04, 2008, 12:11:48 PM
So i haven't heard from you guys in a long time?how has it been>?For me it is the same thing...no improvement:(do you "look" any better?Hope the see some new posts:)
Title: Re: Schamberg's?
Post by: roops22 on Tuesday September 16, 2008, 03:31:04 PM
i am going for a biopsy on sept 29th.  i stop using the creme he gave me and starting using vitaman K creme.  its helping a little i guess.  summers pretty much over at this point, so its no more shorts, but i would like to see these gone by next year..

So i haven't heard from you guys in a long time?how has it been>?For me it is the same thing...no improvement:(do you "look" any better?Hope the see some new posts:)
Title: Re: Schamberg's?
Post by: koes0030 on Tuesday September 23, 2008, 02:43:02 AM
It has been a while!  Unfortunately two of my spots are starting to flare up again, just when I thought they were on the way out.  One is behind my right knee, though it is starting to spread over to the side of the knee.  The other is on my shin.  They aren't in exactly the same places as they used to be, but they're "shifting" around.  I haven't been doing anything differently since they started fading... my diet is the same, and I'm using all the same creams.  At least we're heading into winter, so we won't have any problems wearing pants to cover up :( 
Title: Re: Schamberg's?
Post by: roops22 on Tuesday September 30, 2008, 01:15:40 AM
biopsy done today, results in 2 weeks
Title: Re: Schamberg's?
Post by: lari_iacob on Friday October 03, 2008, 07:21:36 AM
biopsy done today, results in 2 weeks



 :-\Hope everything is fine and let us know about the results!Kisses and hope to hear good news from you :-*
Title: Re: Schamberg's?
Post by: skin12 on Wednesday October 08, 2008, 12:53:27 AM
Hi All-

I'm new to the forum, but have been reading some of the experience's here and felt that I should share my story.  I'm a 30 year old male, and about 4 years ago developed schamberg's disease on both of my lower legs... mainly my feet.  For more than two years I relied mainly on self-diagnosis (not smart) and finally confirmed with a dermatoligist 1 1/2 years ago.

I really can't say anything but to validate what the other success stories here have already said, VITAMIN K!!! seems to be the solution.  On top of this, I started running, cycling, and being more physically active to ensure blood flow in the area was adequate.  Like most of the others posting here, I was able to tie new outbreaks almost exclusively to times when I was on my feet for long periods of time, and mainly when in a stationary position.  In my opinion this is a combination of poor blood flow, allowing blood to pool in the lower leg area, along with the capillary weakness allowing the blood to leak into the skin.

After I starting increasing my activitiy level I saw improvement, but the real breakthrough came when I started eating plenty of Vitamin K rich vegetables (I guess I got lucky when I started dating a vegetarian :).  I had already started to increase my veggie intake, but the more I ate the better it got... to the point where spots I had for years disappeared for good relatively quickly.

I won't lie and say that a spot (a very tiny spot) here or there doesn't show up, but I know that within a 2 day timeframe it will be gone.

I'd urge everyone who hasn't tried it to give this a shot.  The worst case scenario is that you start to live a healthier lifestyle. 

The main vegetables in my diet are spinach, brocolli, tomato, red / yellow pepper, and onion.  The spinach and brocolli give a bump in vitamin K, while the tomato and peppers have Vitamin C and Bioflavanoids (other potential helpers).

Hope this helps!
Title: Re: Schamberg's?
Post by: lari_iacob on Wednesday October 15, 2008, 11:15:58 AM
biopsy done today, results in 2 weeks

Are you ok...we haven't heard from you?How did the results came back?I really hope everything is allright with you
Title: Re: Schamberg's?
Post by: roops22 on Wednesday October 15, 2008, 09:40:52 PM
went to the doc yesterday, biopsy came back negative, just confirmed schambergs.  doc gave me new creme, this one is called Protopic.  i go back in 2 months..other than that, nothings changed..

biopsy done today, results in 2 weeks

Are you ok...we haven't heard from you?How did the results came back?I really hope everything is allright with you
Title: Re: Schamberg's?
Post by: Trisha21 on Saturday November 22, 2008, 10:31:54 AM
Hello

I'm new here as I was only diagnosed last week.  I have had a "rash" of and on for years - I am now 58 - mostly on my buttocks, but some itching on my shins with red spotting.  My GP just prescribed steroid creams and they did sometimes clear it up after a while.  I now always use Aqueous cream for washing in the shower (although I have tried other creams, lotions and potions in the past) I moisturize all over with Doublebase (just changed from E45 as I found the new pump containers separated the cream to oily and then thick) after showering.  I did also use a cortisone cream as well at night but now the dermatologist says this is a waste of time.


I found that I broke out in my "rash" for no apparent reason, the first time when I was 13 when no one knew what it was and I was isolated for 6 weeks as I was thought to have the plague at the very least!  Then again several years later and periodically from then on.  A couple of years ago I had a nasty sore patch on my aureole and I found that it seemed to be taken seriously and I was referred to a dermatology clinic.  The nurse specialist that I saw sent me for a biopsy as she thought I might have Pagets Desease.  The results were negative and it was then that I mentioned the "rash"  She was astounded that it had gone on so long and was so severe and called the doctor in to look. As my skin was very dry a  form of eczema was diagnosed and the washing with aqueous, E45 and cortisone regime began.  Because I had been referred to the  dermatology once I could phone when ever things got to bad and they would see me without going through my GP.  I have lost count of the number of times I have been in the last 2 years as the "rash is now there all the time.  My legs and feet are covered up to my knees - I  had a scan in August as the GP thought it was to do with circulation but I was told - no they are fine, lots of women my age have red staining but it is nothing to worry about.  When I went to the dermatology clinic in October they said enough was enough and did a biopsy,  which came back inconclusive, and sent me to see the consultant.  The "rash"  had been really bad for about 6 months and I was so depressed.  I felt dirty, and unclean (a throwback to when I was 13) I just sobbed and was hugged and reassured that I wasn't dirty at all and certainly not infectious.

Well I saw the consultant a week later and now I know what this "rash"  is - as easy as that - the consultant knew instantly.  I just fell in a heap and even he hugged me when I sobbed and sobbed.  After 45 years I have a name for the "rash"  It still covers my legs to my knees and from just under my boobs to half way down my thighs, my buttocks are nearly as bad as my legs and there are now patches of it on my arms but the consultant said he had never seen or heard of it on the face or neck so in that respect I am fortunate.

I am to continue with washing with Aqueous and moisturising with Doublebase but to stop the Cortisone cream as the consultant thinks that is a waste of time.  I cannot have Colchicine which might have an effect as I have heart decease,  I am to be measured for support stockings as that may help.  I have noticed on looking up Shambergs on the internet that Aspirin and Paracetamol may make Shambergs worse but I need a small dose of aspirin daily for my heart and a large dose of paracetamol for my osteoarthritis.  I eat a healthy diet and don't drink or smoke.  I use a non-biological washing powder (Persil)  What else can I do?

 
Title: Re: Schamberg's?
Post by: Tropicalfish on Wednesday November 26, 2008, 04:28:18 AM
I was recently diagnosed with Schamberg's disease. My dermatologist said I could use topical or systemic steroids. Since I am a resident physician, I know the side effects of steroids and would rather not take a chance at having any of the side effects, such as thinning skin, osteoporosis, or mania. I did a literature search an found a case report of a man with Schambergs who was treated with Vitamin C 500mg twice a day, and Rutoside (rutin) 50mg twice a day. ("Treatment of progressive pigmented purpura with ascorbic acid and a bioflavonoid rutoside" Journal of Drugs in Dermatology, March 2006). His Schamberg's went away after a few months. I was skeptical about simple vitamins have much therapeutic effect as my training has biased me toward thinking that only pharmaceutical agents are effective. I thought I would give Vitamin C and Rutoside a try anyway. I have started this treatment and now am on my second week. It has lessened the amount of petechiae I have on legs, and the lesions are lighter. Hopefully it will go away after a few months in time for summer.
Title: Re: Schamberg's?
Post by: Tropicalfish on Wednesday November 26, 2008, 04:36:45 AM
I noticed my lesions are much lighter on my week off birth control, but then, it may be the vitamin C and Rutin regimen I have been on. I got my Rutin (rutoside) at Clark's http://www.clarksnutrition.com/


Hey everyone! I'm new here. I'm a 25-year-old female who was diagnosed with Schamberg's (via punch biopsy) 4 years ago, at age 21.

I had a massive outbreak that covered me in 3" diameter, starburst lesions from the waist down. My dermatologist said I was the first case she'd seen since 1976, and that there was no treatment. All the lesions spontaneously cleared after about 2-3 months.

Now, more than FOUR YEARS later, just when I thought I might be home-free, two, smaller lesions have cropped up on my butt and ankle. It's been about 3 days and they haven't gotten bigger (about 3/4 inch now) or more numerous, but I'm worried about what I will see over the course of the next month.

That said, I have a few questions for my fellow sufferers:

On average, how long do your outbreaks tend to last and how long do you tend to go with clear skin until another outbreak?

Were subsequent outbreaks less severe than your first?

Did you ever just have a spot or two at a time that never worsened/spread?

Lastly, have any of you women experienced clearance after going off birth control?

I've been on it for 9 years and feel it's done lots of odd things to my body. I am going off in two months and praying this stuff will vanish. For the record, I don't smoke or drink AT ALL, I'm a vegetarian, I'm on no other meds (OTC or otherwise), and I am a healthy weight.

EDIT: I'm making a new, question thread out of this.
Title: Re: Schamberg's?
Post by: dolores on Wednesday November 26, 2008, 08:06:17 PM
hello - not noticed the birth control thing, but i'll look out.  I've also seen that study and tried Vit C and Paroven(Oxerutin) for the last year, but I've been a bit rubbish at complying really, started about a year ago but not been taking that regularly, will get back on it properly.  I think it did definitely improve my spots...albeit very slowly - possibly more that they went more of  a browny skin colour than bright red - certainly i've been able to get away with thinner tightds these days.  Which is encouraging, i'll start again properly and post back :)
Title: Re: Schamberg's
Post by: rudee on Friday November 28, 2008, 06:43:08 AM
First timer here...  looking for answers on the net and found this forum.  I'm 60, male, active, fit, but have those redish/brown dots on my lower legs... being near the beach and wear shorts 9 months out of the year lets a tan do the blending, but in winter I have to cover my legs.  Being a man, it is not as bad as a woman on the vanity issue...

Had a doctor (after 5 years) tell me what it is.  I don't think the clinic has any answers except 'live with it, it won't kill you', but I have to think, "what if it gets on my face"!  Not a chance from what I read. 

Had a previous doctor prescribe prednisone and some cream, that was years ago and it never really went away.  Being in the sun, I was leary of using topical grease with a pill.  Eventually I just let it slide till now. 

I came across the article that recommends 'Colchicine'.  Other than some runny poo, is there anyone other than that article that has had recent experience with this med?  The way I look at it, when the dots disappear so do the users of the forum.  You know how that works...., you go to the doc, he hands out the prescription and you go get it filled.  The doc was $150 (that's a month of all you can eat on the Dollar Menu)... plus the meds.  The plan was to go back to the the doc after the treatment, but why spend $$$ for another appointment!  So you never go back because "Hey, I'm fine, why go back and pay the doc to tell him that"?  ....because they won't speak to you on the tele...  The point is, once you find the cure and it works, why come back to the forum...?  There's some life to catch up on!!  So, my question again....  I'd like to try this Colchicine stuff and need a few comments from any listeners... 

As long as I don't get hair on my tongue and pee seafoam green, I'd try anything at my age...  except more of that 'sone stuff.   Thinking of doing vitamin C, rutin, and Colchicine at one time...,  put it all in a blender with some ice cream!

Thanks in advance for any info..
     
     - rudee

Title: Re: Schamberg's?
Post by: alferret on Friday November 28, 2008, 04:28:18 PM
Hi all  :)

Male, 42, relatively fit, ex smoker, occasional drinker.
My date with Shamberg's (capilaritis) started in Aug 2005 where I noticed a red'ish group of dot's on my right calf.
Didn't think much of it at the time and as there were no other symptoms it didn't worry me. But it started to spread to my ankles, the tops of my feet my thigh's etc.
Occasionally it would manifest it's self on the insides of my forearms.
After 2 years or so I decided to see my doctor who passed me on to a dermatologist which is where I found out what this condition is called. 
Told about the no cure its for life thing (which doesn't bother me as I'm not a vain person)
I spend upwards of 10 hrs a day on my feet standing by a machine and was told this could be a cause  ::)
I have been told to try flight sox which I have and they had no noticeable effect on my legs.
Lately I have notice my legs drying up quite a lot and now use Aqueous cream after bathing.
What I have noticed and although not a cure is that if I exfoliate it does ease it some what and when I get it on my forearms it goes completely.

 
Title: Re: Schamberg's?
Post by: Tropicalfish on Sunday November 30, 2008, 03:35:12 AM
to Rudee:

I'm don't mean to presume, but I would caution about being on colchicine without routine blood monitoring or the care of a physician, as colchicine can cause neutropenia (low white blood cell counts), thus making you vulnerable to very serious infections.
Title: Re: Schamberg
Post by: rudee on Sunday November 30, 2008, 07:11:11 AM
Thanks Tropicalfish,

    Perhaps I should stick with just the ice cream...    Recently I had my yearly physical and made it over to a dermo via recommendation from my primary doc.    The dermo did not recommend anything, and I went home and Googled Shamberg.  I'll be visiting my Primary doc again in January, but prior to that I want to send both docs my findings and skip over the 'sone' creams and pills if they are suggested. 

    Has anyone tried tan-in-a-bottle?  Wonder what color my ankles would turn?

     Still looking for any users of Colchine....

         - rudee
     

Title: Re: Schamberg
Post by: Brazil on Monday December 15, 2008, 06:38:30 PM
HI all,

I just started using colchicine(2x0,5mg) exactly like that portuguese articled posted by another brazilian... and my doctor is the own autor of that article!

about 3 years with Scham`s ....never tried nothing before to get rid of it... 

I hope i have good results because i think colchicine is the best ....maybe unique, chance to get better...

I will post here soon about how it is going...

See you!





Thanks Tropicalfish,

    Perhaps I should stick with just the ice cream...    Recently I had my yearly physical and made it over to a dermo via recommendation from my primary doc.    The dermo did not recommend anything, and I went home and Googled Shamberg.  I'll be visiting my Primary doc again in January, but prior to that I want to send both docs my findings and skip over the 'sone' creams and pills if they are suggested. 

    Has anyone tried tan-in-a-bottle?  Wonder what color my ankles would turn?

     Still looking for any users of Colchine....

         - rudee
     


Title: Re: Schamberg's?
Post by: Tropicalfish on Thursday January 01, 2009, 09:05:01 PM
Update on my Schamberg's

It's been about 6 weeks since I've started Rutin and Vitamin C, and I just have a few fading spots left on my legs. I'm so happy!! Hopefully it'll be gone for good.
Title: Re: Schamberg's?
Post by: luigilula on Sunday January 04, 2009, 09:42:41 AM
Hi all,   

I don't have any improvements in my legs.  I have been taking a supplement for vein support for about 10 weeks.  It's mainly Vit C and flavanoids. (I've been taking 2 capsules a day.  The bottle doesn't give a specific dose just a range to start off so I really don't know how much I COULD take.)  Plus in Nov. I added Vit D3 and Vit K to my regimen.  Also started taking high dose Vit C (Ester C). 

The only thing different is that the leg cramps I was getting more frequently have subsided.  Wearing support stockings/compression stockings was not effective.  During the summer I got a lot of sun and the tan did make the spots less noticeable but of course the tan faded now that it's winter.

My spots don't interfere with life but I'd certainly love for them to go away.  I never did try the Castor Oil soaks.  I'll hold off on the Colchicine for now. 


Regards,  LuAnn
Title: Re: Schamberg's?
Post by: Antischam on Sunday February 22, 2009, 12:30:35 AM
Hi!

I'm the guy who posted about the colchicine...


When I used colchicine, I got excellent results. The spots went away, and so the lesions, and this good condition of mine went over for more than a year after I stopped using the substance. But, sadly, it came back, with less power. Now I'm going to take colchicine again. Like I said, the disease came back, but weaker after the treatment and I think that it will fade away someday if I continue with this treatment.

(Ah... And I didn't have any side effects when I was taking this substance!)


Best Wishes (and sorry about this poor English!!!!  :P)
Title: Re: Schamberg's?
Post by: smile4cobra on Saturday February 28, 2009, 12:04:40 AM
Hi, I've been doing a little research since none of my doctors or my dermatologist have answers for me. Seemingly, I may have Schamburgs but my doctor didnt even know what it was! All he said was "its most probably because your a bit over weight". Im over weight but Im not obese. It looks similar to some of the pictures I've seen posted. So can I email some of you with my pictures so that maybe you can tell me if what I have looks like what you have? I have these brown/redish dots that look like freckles all over my lower legs, calfs, ankles and the top of my feet. Its been like this for a few years and its only getting worse. Nobody seems to have answers to me. This is destroying me life  :'( Im a 26 year old female and I refuse to wear shorts or a skirt even when its over 100 degrees out here. I hate the summer because of this. I cant go swimming. When my friends have pushed me to go vacationing and swimming and tried telling me it only looks like freckles to make me feel better... the very few times that I did wear a bathing suit people were staring at my legs like Im some kind of sick person. I've had someone ask me if I have skin cancer! I dont have skin cancer. My dermotologist told  me that this doesnt effect my health and its just a vanity issue and I need to get over it. He gave me some steriod compound cream with sylic acid and all it did was dry my skin to a crisp. The stops are still there. I have another appointment coming up... I dont know if my new doctor can help me.  ???

Someone please give me some answers. HELP!
Title: Re: Schamberg's?
Post by: lari_iacob on Tuesday March 10, 2009, 11:51:52 AM
Don't worry. I am also 25 and this was difficult for me too...I coludn;t say that right now I am all Over this issue but i try to cope with it...If you want to stay in touch you can e-mail me on [email address removed]
Title: Re: Schamberg's?
Post by: roops22 on Thursday April 30, 2009, 03:31:23 PM
here is my update..these 2 pics posted july of last yr

(http://img.photobucket.com/albums/v60/roops22/IMG_0118.jpg)
(http://img.photobucket.com/albums/v60/roops22/IMG_0117.jpg)

and these taken today..i have nothing better to do since i got laid off last month.. >:(
(http://img.photobucket.com/albums/v60/roops22/IMG_0018.jpg)
(http://img.photobucket.com/albums/v60/roops22/IMG_0019.jpg)

i dont know why they are fading, i stopped all cremes and whatnot, i was a heavy drinker but since stopped..maybe
that helped?  ??? ???
Title: Re: Schamberg's?
Post by: helene01 on Sunday May 10, 2009, 10:29:19 AM
Hey all, haven't been on this forum in forever as my schamberg's cleared up for over a year so i thought wheyyyy it's gone! well today i found the lesion on my ankle is coming back and so are the cayenne pepper spots.

The only thing i can say that clears up schamberg's is Vitamin C with bioflavonoid tablets 500mg and i also take Vitamin K tablets 100mg. Can't believe it, hope it doesn't come back for summer else im buggered...

However, i think in my case this is linked to depression as when i first got depressed i got Schamberg's and when i got through my bad patch of depression the Schmaberg's went too! hmmmm weird.

Don't use the colchicine stuff, through my experience all doctors and dermatologists are useless, nothing really works. I f we've all found something that helps the condition then why waste your money on seeing dermatologists who are stuck in their ways.
Title: Re: Schamberg's?
Post by: mamaof7 on Saturday May 23, 2009, 05:12:50 AM
Hello.  I have had Schamberg's for years, but it wasn't diagnosed until recently.  I am getting a second opinion next week to make sure.  I noticed a definate connection with sunless tanning lotions.  It started on my legs and then went away, but would come back every year or two.  I now have had it for 12 mos. and have an 8 month old, so I didnt do much treatment until recently and finished nursing.  For some reason, this past 2-3 weeks, it has spread to almost my entire body.  The itching is driving me crazy.  Mine is also red/purple, not cayenne.  It starts as little red bumps and then inflames and becomes intensly itchy.  The only way I got rid of it in the past is to not scratch for weeks, but it is SO hard.  I noticed there is a large variety of symptoms.  Does anyone have a suggestion on what will calm the itching. I have tried steroid cream, cortizone, calimine lotion, benadryl cream and none offer a lot of relief.  Benadryl is probably the best.
Title: Re: Schamberg's?
Post by: fe2283090 on Saturday May 23, 2009, 05:22:42 PM
Hey everyone. Im new to this website but as I was reading everyones stories, I felt in place. A lil about me, I've had pigmented pupuric demratitis about 5 yrs ago. But now its been impacting me the most. Im 18 yrs n I have these ugly red dots on my leg. Im so embarrased to wear shorts or dresses and now the summers is near :-\ a description of my legs; I have bright reddish arising on the outter side of only my left leg. They get pinkish in hot weather n red when im cold. Weird. I have tried laser but no work. I wonder if I have schamburgs. I have a derm. Appointmnt nxt wk. Does it sound familiar to anyone and if they have faded, what DID U USE?? Lol
Thnxsz   :) hope to hear from someone soon.
Title: Re: Schamberg's?
Post by: luigilula on Sunday May 24, 2009, 05:23:18 AM
Mine started about 1996 or 97.  I had tried to wax my legs (actually that sugar stuff) so I've thought it had something to do with that but I may have used a self-tanner then as well.  I had a biopsy and they called it .... oh, can't remember,but something to do with a response to inflammation. 

The first of the month I went to the derm for an unrelated issue but showed her my legs.  She called it something else and I told her I thought it was Schamberg's.    She offered me the usual lighteners, etc., which I declined. 

I have an appt. on June 1st to see about a vein surgery called Vnus.  My legs swell alot and the pigmentation I think, at the very least, is aggravated by that. 

If I was young like some of you are I'd probably be more aggressive in getting better results.  But at 50, I really don't care if someone thinks my 'dots' are unattractive.  Once, someone even asked me where I got the dirt on my legs!  I say to myself it's what makes me unique.

At this point, I'm not taking any medication for it.  I ran out of the vein support stuff and didn't reorder as I really don't think it made any difference.  And now that it is almost summer, I've stopped the Vit. D since I should get enough from the natural light. 

I wish some medical school would do a study so we could participate.  Maybe some sort of laser treatment??

Regards,

LuAnn :)
Title: Re: Schamberg's?
Post by: blondie85 on Friday May 29, 2009, 07:39:40 PM
My first patch of schambergs started about 2 years ago on my shin. since then i developed many red circular pinprick patches on my legs and thighs, some of which got bigger and bigger.

Same as you all i went to GP..no cure...referred to hospital...no cure... and just as i was abpout to firk out for a private consultation i decided to try something called ANEW LASER FOR LEGS by Avon. i didn't hld out much hope and thought i was doomed to support hosiery (not a good look for a 24 year old female in summer). I used the cream for 4 days and now all of my patches have faded to the colour of my skin!! i recommend this to anyone, i didnt change my diet, take vitamins or medication, just thought i'd give this cream meant for thread veins a go. it's taken the redness out entirely. i'm amazed, i've cured my Schambergs for £10.

please try this if you can get hold of it, i'll happily get my legs out this summer, its almost unoticeable, amazing   ;D ;D
Title: Re: Schamberg's?
Post by: chefgirl on Tuesday June 16, 2009, 01:22:53 PM
Which Avon Anew product was it exactly? There are 14 different Anew products. I'm very interested in trying it out.
Thanks
Chefgirl
Title: Schamberg's Disease
Post by: wanwilson on Friday July 03, 2009, 11:02:39 PM
July 3, 2009.  I have had Schamberg's for 9 years.  I am now 39 years old - female.  It is the kind that can go away (other than the staining) and will break out if I stand for long periods or if I drink - much worse if I do both.  I try to enjoy the casual drink with my legs up which can be hard to do if you are down town with the girls :)  Anyway, it is a huge nuisance for me.  I've been on vacation in Mexico and try not to drink.  Very hard to do.
I've been to several dermatologists and they say "don't drink".  I also get it if I am on my feet for any length of time.  The capillaries leak which puts pressure on the muscles causing my legs to ache.  The spots are mostly on my lower legs and more prominant around the ankle area.  I wear support stockings and they help but the blood does pool down my ankles anyway.

I've read a lot and tried a lot - with no success.  Does anyone have any recommendations?

Cheers,
Title: Re: Schamberg's?
Post by: Cristina messina on Friday November 13, 2009, 12:56:51 PM
Hi  all,

I have not posted anything for the last 3 years. I really thought that I was cured forever but it seems that is something that does come back.
I had it fro 3 years between 2003 and 2006 and it was pretty bad all my legs and arms were covered really like nothing I have seems before in any pictures.
The thing is that at the time I used light therapy (tanning beds) which did not worked as well as proper natural light from the SUN, Vita-K cream and obviously the SUN which I think it really helped.  Now there are back I have had it for a month now. I ran to the tanning shop and put Vita-K on it but is not working as fast as it did before it could be because my cream is quite old,  I had them since 2006.
I have been reading the forum and I tried to work out what s it that produces Schambers on me.  I have read that the birth control Pill has had some effect on people and I also thought that is what started it on me in 2003 but I have not taken the pill or any other hormone for 6 years so in my case I do not think it was the pill I can discard that on my case. So the other 3 things that I could thin k of  that were happening 6 years ago and now are:

1.   I had root canal treatment 6 years ago and about 2 months ago just before I had any bruises I went to the dentist because I broke a molar opening a nail varnish (I know really stupid) and the dentist put all sort of chemicals on my tooth.

2.      Also I took some pain killers, I have kept away from aspirin or paracetamol for 6 years and I avoided at all cost pain killers only in extreme cases like when I had kidney stones and doctor gave me some Tramadol  and it did not cause anything at all. Anyway I broke my tooth and was quite desperate so I took some Ibuprofen Plus for a few days…. So not sure what produce it again the dentist or the Ibuprofen

3.    The other thing that I was also happening at the time when I first had, was that I was extremely depress and stress at the time and now I am also going through a rough time…

So I guess it could be the dentist, the Ibuprofen or emotionally thoughts on this?

I think I will get some new vita-k cream the one I am using is 3 years old and keep going to the Tanning shop unfortunately thought I live in London and there will be not sun until April next year.

Any thought will be appreciated. :(

Title: Re: Schamberg's?
Post by: lynnea on Friday November 20, 2009, 02:08:08 AM
Hello, I am a 16 year old teenage girl, I sure care a lot about how I look, to my wonderful surprise on June 25th 2009, I was diagnosed with Schamberg's Disease, it was probably the hardest thing for me to hear when my dermatologist told me there was no cure. I have had this since January 2009. Before I went to a dermatologist my lower legs were just covered, it was horrible. I showed him my legs and asked him if it was going to get any worse, he looked at them and said, " Doesn't look like it can " , to my surprise after a straight week of complete depression, my lower legs, upper legs, back and butt, had Schambergs. All it did was seem to get worse, I was like going crazy, it was summer, and I couldn't wear shorts. After about a month or two, I started to cope, at the end of summer I was dealing with it, and everything (besides my skin) was close to perfect. In September 09 I noticed it was fading, everything was working out for me, It was completely gone off my back, butt and upper legs, still on my lower legs, but it was fading! I was ecstatic. All of October I was schambergs free.:) Than at the end of October, things started getting bad, and nothing seemed to be going right, I was failing most of my classes, I got played by some guy, and my sister moved out. I was very unhappy, it's november now, and I am completely covered in Schambergs, upper and lower legs, butt, back, stomache, my arms are covered, even my shoulders have Schambergs, oh and, I GOT IT ON MY FACE. I have never even read about someone getting it on their face, But guess what, It happens... and it spreads quickly on your face. I am also crazy itchy, this is such an unfair disease and I never thought something like this would happen to me, but i guess it. I went to the doctor today to talk to him about it on my face, because I cant even cover it up with makeup. He gave me a prescription for prednisone. Apparently it's not good for you at all though, But i'm going to give it a try for 7 days, wish me luck, because i sure as hell don't want this to get worse on my face.
Title: Re: Schamberg's?
Post by: roops22 on Saturday December 19, 2009, 04:47:53 PM
im pleased to say that mine are fading nicely and almost gone!  ;D
Title: Re: Schamberg's?
Post by: dead_bird19 on Saturday December 26, 2009, 12:26:51 AM
Hi everyone!

Haven't posted for a really long time. I just thought I should post some of my research I've been doing recently (last 4 months i have been obsessed with getting rid of this disease).

I haven't got any answers...just loads of questions and vague connections but I need to share because you never know if you're onto something.

Firstly I went to see a naturopath a little over a month ago.  She put me on a specific diet in which I can't eat sugar, wheat or drink coffee.  I'm not entirely sure if it's working...it's Summer at the moment and I did have my usual Summer flair up a few weeks ago but once I got over the disapointment I realised that the spots were only very tiny (only slightly bigger then a freckle)...an improvement to the usual size...but not enough.  I want to get rid of it entirely!

So while I'm still committed to my diet I've been looking into other things as well.  By other things I mean soap, dishwashing liquid, washing powder, shampoo, moisturiser, sunscreen, my clothes...almost anything that has contact with my skin.  I've found some interesting things. i strongly recommend that you check this site out

http://www.mionegroup.com/en/toxic;jsessionid=E40D141B37251CBFDFE3797D6B20A0E7

everything that is being used in your products is dangerous!!! I've thrown all my products away and am using alternatives from the health store.  It's hard but I think it's worth a shot.

Something that I thought was interesting was another type of dermititis that it's similar to this one but I think more severe which is caused from fragance.  "Fragrance" is in everything as well...even really mild soaps.  The website said that the fragrance reacts from the sun which cause discolour in the skin!  Could it be that this is the same?  Some time of chemical we use on our skin reacts to heat???  Check it out

http://www.carefair.com/Skincare/Disorders/Berloque_Dermatitis_99.html

I don't know guys :(  I'm trying so hard to come up with a reason here! Doctors are no help so I'm playing my own and I hate to have to do that...sometimes I feel like I really am looking for the needle in a haystack.  I'll post if I see any improvement with the not using products.  If anyone's interested in the diet the naturopath gave me I can send it to you!  No gaurantees but i think most of us here are willing to try anything.  I'm pretty sure I'll be going to clinic to test for allergies in a few weeks...see what they find...if anything.  Good luck everyone!!!
Title: Re: Schamberg's?
Post by: chefgirl on Thursday March 04, 2010, 09:09:45 PM
I've had Schamberg's now for about 2 years. Got it shortly after a cold and my fathers passing from Cancer. Been reading alot and have decided to try the Vitamin C with Rutin 500 mg each twice a day. Has anyone tried this and has it worked for you? Wondering if there is anyone out there that have had this go away (if so how did you do it). Haven't seen recent posts so I was wondering if its gone or if hope has been lost.
Chefgirl
Title: Re: Schamberg's?
Post by: helene01 on Sunday March 07, 2010, 07:50:13 AM
The only thing i suggest which cleared up my schambergs for two years (it's coming back :( booo) is vitamin k supplements, foods with vitamin k in it i.e spinach, strawberries, lettuce etc, and vitamin c supplements with bioflavanoids. To help fade the spots quicker i suggest the tanning beds or natural sun light...

I think it is linked to fake tan lotion in some cases, as that is what triggered mine off 3 years ago....Johnson's moisturiser one. Secondly viruses set it off as schambergs is linked to a low immune system etc, i just had Glandular Fever so mine will definitely be back now :'(. Thirdly getting depressed about it in my opinion only prolongs it....there is a cure for everything and thankfully someone found a cure, ok it doesn't last forever but it clears it up for a while....we all need to think along the lines of 'i can beat this, i WILL beat this', seriously i found that when i stopped worrying about it there was a dramatic decrease in spots.


For those that suffer really badly, i suggest going on a diet of vitamin k foods for a week, you will seriously notice a difference.... :)
Title: Re: Schamberg's?
Post by: chefgirl on Wednesday March 24, 2010, 02:57:49 PM
Have the spots stayed gone since you started the rutin and vitamin c?
Title: Re: Schamberg's?
Post by: helene01 on Sunday March 28, 2010, 08:28:10 AM
_at_ chefgirl:

It takes a few months for your body to start absorbing the vitamins properly but after taking 500mg a day for two months my schambergs disappeared completely. I also took them in conjunction with 100mg vitamin k tablets :)

hope this helps
Title: Re: Schamberg's?
Post by: chefgirl on Monday April 05, 2010, 05:00:56 PM
But yours came back right?
I guess what I dont understand about the condition is if its a "Chronic" thing that is caused by a virus, unknown agent (soap, clothes, etc) or meds..... if your virus is gone, unknown agent is not being used and the meds you were on are no longer being used.... why wouldn't it go away?
Title: Re: Schamberg's?
Post by: danielle2 on Wednesday August 25, 2010, 01:53:41 AM
try looking for "itching purpura of lowenthal" its diagnosed by biopsy. its rare i have it no one in my family does. its part of the pigmented purpura family
Title: Re: Schamberg's?
Post by: AV on Friday October 01, 2010, 09:17:13 PM
Hi all
After consultation with doctor I have tried rutin and pentoxifiline...but in vain :'(
It's there for around 1 and half years but not a single spot has gone, I can only see some new spots adding up whenever i walk too much
haven't tried too seriously on talking vit k and c but i think that is the only hope left.

Will it ever go ?? :'(
Title: Re: Schamberg's?
Post by: roops22 on Tuesday November 16, 2010, 02:27:48 AM
mine have gone away completely!  ;D ;D
Title: Re: Schamberg's?
Post by: chefgirl on Wednesday January 19, 2011, 04:05:12 PM
How did you get yours to go away? The Protopic Cream?
I got this shortly after my dad died of cancer and I got pregnant. Once I had the baby I used a cream called Vanous and it went away.... unitl I got pregnant with my second child.
Hope yours stays gone for good. Best of luck.
Being 28 with this for almost 2 years is not pretty,
chefgirl
Title: Re: Schamberg's?
Post by: Rodney077 on Monday March 28, 2011, 03:44:46 PM
My first patch of schambergs started about 2 years ago on my shin. since then i developed many red circular pinprick patches on my legs and thighs, some of which got bigger and bigger.

Same as you all i went to GP..no cure...referred to hospital...no cure... and just as i was abpout to firk out for a private consultation i decided to try something called ANEW LASER FOR LEGS by Avon. i didn't hld out much hope and thought i was doomed to support hosiery (not a good look for a 24 year old female in summer). I used the cream for 4 days and now all of my patches have faded to the colour of my skin!! i recommend this to anyone, i didnt change my diet, take vitamins or medication, just thought i'd give this cream meant for thread veins a go. it's taken the redness out entirely. i'm amazed, i've cured my Schambergs for £10.

please try this if you can get hold of it, i'll happily get my legs out this summer, its almost unoticeable, amazing   ;D ;D

This sounds amazing. I have tried everything and have had no luck with clearing it up. I have worn support hose, which helps a little, and I tried a few different products, with limited results. I will look into the Avon product, hopefully it will work as well for me as it has for you. Thank you very much for posting this information. I really appreciate it.

Regards,
Rodney
Title: Re: Schamberg's?
Post by: Mark555 on Monday July 09, 2012, 11:31:21 PM
Treatment of Schamberg's disease with advanced fluorescence technology

Link: http://findarticles.com/p/articles/mi_m0PDG/is_4_11/ai_n58600987/


Narrowband UVB therapy as an effective treatment for Schamberg's disease

Link: http://www.ncbi.nlm.nih.gov/pubmed/18186840
Title: Re: Schamberg's?
Post by: michelle21689 on Monday August 20, 2012, 06:49:52 PM
I know you've all heard this a thousand times but I'm glad I have found a place to discuss this with many others that have this condition. For a long time I have been trying to find answers and some how I finally stumbled upon here. I'm surprised there's many females about my age on here! They say it's common in men but all I see here are women lol.

I noticed my markings on my side about a year ago and thought nothing of it. It itched a little bit but not for long. A year later I noticed it began to spread towards my back and I freaked out hoping it wasn't serious. Luckily, it wasn't. Sometimes I accept it and sometimes I worry about it that it will spread. I can live with this as long as it doesn't continue to spread..Doctor gave me some stupid expensive cream but it didn't do anything!

Seems like Vitamin K is helping people. I am going to try Rutin and Vitamin C, I researched that it is safe and a doctor actually "cured" three out of four people who had this disease. Someone else on here claimed it helped them too. I think my birth control may have contributed to the spread..so if these don't work I will one day try it again when I am completely off birth control.

Here is a photo of my markings a few months ago. Sometimes they look more red...sometimes not. I should be thankful I can wear clothing and no one can see it, that it hasn't spread dramatically, etc.

http://i1121.photobucket.com/albums/l520/chelle21689/IMG_2246.jpg

I hope the supplements work! I'll post an update once I start taking them...I'm the type that always comes back lol.

P.S. it is a pain in the butt to reply on here because the verification letters are so hard to make out even if I refresh.
Title: Re: Schamberg's?
Post by: michelle21689 on Thursday October 11, 2012, 04:24:13 PM
Update: So I've been taking 2 doses of vitamin C and 1 rutin a day. 2 months later (took forever) it's starting to fade very dramatically.

At 1 week you could see a difference. The red marks weren't as vibrant. At a month I saw a spot starting to fade but other spots stubborn.
At 2 months it seems like all my spots are starting to fade very lightly. It's still there but not as noticable.

Hope to make continued improvement!! :)

P.S. I HATE replying on here, it sucks.
Title: Re: Schamberg's?
Post by: JackPoole on Monday August 12, 2013, 06:53:23 AM
today my dermo said i have Schaberg's.  prognosis seemed pretty glum.

2 mos ago, i thought it was a patch of poison ivy, as i had been crawling in the foliage to put up Xmas lights.

about a week later, if formed a perfect circle, did not itch.  I showed it to a pharmacist, and several pediatrician friends, who all said ringworm.

i got over the counter fungicides, which didn't change it at all, so today i went to the dermo.  He said Shamberg's and just gave me some cortisone cream.  which probably won't do anything.

looking up Schamberg's on the net, my mark looks nothing like it.

It is red/magenta, not orange/brown

it does not itch., has almost no feeling.

it is raised up from the skin in a circle, about 2.5" diameter.

No other marks anywhere.

It is on my calf, and "dotted" like the descriptions.  I'm a 45 yr old female.  no one in my family has had this.

I'm getting a 2nd opinion monday.

hello friend I know thread is bit old but I am facing similar marks... Please help me with quick reply
Title: Re: Schamberg's?
Post by: JackPoole on Monday August 12, 2013, 05:01:15 PM
today my dermo said i have Schaberg's.  prognosis seemed pretty glum.

2 mos ago, i thought it was a patch of poison ivy, as i had been crawling in the foliage to put up Xmas led lights (http://www.niceledlights.com).

about a week later, if formed a perfect circle, did not itch.  I showed it to a pharmacist, and several pediatrician friends, who all said ringworm.

i got over the counter fungicides, which didn't change it at all, so today i went to the dermo.  He said Shamberg's and just gave me some cortisone cream.  which probably won't do anything.

looking up Schamberg's on the net, my mark looks nothing like it.

It is red/magenta, not orange/brown

it does not itch., has almost no feeling.

it is raised up from the skin in a circle, about 2.5" diameter.

No other marks anywhere.

It is on my calf, and "dotted" like the descriptions.  I'm a 45 yr old female.  no one in my family has had this.

I'm getting a 2nd opinion monday.


hello friend I know thread is bit old but I am facing similar marks... Please help me with quick reply
Title: Re: Schamberg's?
Post by: beeludz on Tuesday June 20, 2017, 11:12:41 AM
Hello,
I'm a 24 year old female, and have been diagnosed with schambergs disease over 4 years ago, I thought i'd share my story and all the info that I've gathered over the years to anyone else who's struggling with this out there!
How it started: I got really sick, took lots of antibiotics in a short space of time, and took a while to recover, soon i started noticing tiny red dots on my feet.
Mine started on my feet, eventually grew into red rings, and eventually went higher up until my knees, it looked terrible and my self confidence has been a huge struggle being a girl who enjoys wearing dresses and skirts and shorts, as i'm sure all of you experience. I ended up at a nutritionist who made me realize that my food could be contributing, since this is an auto-immune issue and everything stems from the gut. The main things I was intolerant to, and most people are also were gluten and dairy. I became a vegan, and stopped gluten, and after 6 months the red rings faded into more of red dots, it was still very visible and still spreading up my leg and beginning to appear on my hands, but looked way better than before.

I went to 10 different skin doctors, and eventually did a biopsy to confirm that this was schambergs, and tried using topical steroid creams that one skin doc gave. The pigmentation definitely became way lighter but as soon as i stopped using the creams it came back, and worse. I realized steriod creams are not the solution since they're just temporary making it look better, it does not heal the root of the problem. I also tried homeopathy treatment for 2-3 years, and no improvement with that as well.

Last month, I switched to lypo-spheric vitamin C instead of my normal 1000mg vitamin C supplements, and started taking 500mg of rutin and Mega GLA few days ago. I have noticed improvements with the lypo-spheric vitaminc c, and it looks promising, so will keep everyone updated with that and how the next month with rutin goes.

Over the years I became abit obsessive, and one by one figured out a few things that i've noticed are making a difference, and do help:

- Keeping legs elevated, sleep with a pillow under legs, if walking alot keep taking breaks sit down and elevate legs, if working on a desk dont keep legs down on the floor, get a foot rest.

- Lypo-spheric vitamin C instead of normal vitamin C supplements (big difference!)

- Gluten/Dairy Free diet (I notice dairy dramatically increases inflammations)

- I quit drinking coffee (noticed an improvement)

- Quit/limit alcohol

- moisturizing daily (using fragrance free moisturizers for v sensitive skin)

- I changed my soaps and detergents to sensitive skin ones (might help)

- STRESS LESS! stress is the biggest cause of any auto-immune issue, to heal the auto-immune problem first heal the stressers in life which is very challenging and i'm still struggling with but at least try your best to stress less

- Yoga! Increases and improves blood circulation

- Diet high in Vitamin K: cucumber, avocado, kale, salad leaves, asparagus, broccoli

And I'll keep you guys posted on the rutin and mega GLA :)



Title: Re: Schamberg's?
Post by: davidgale on Tuesday July 17, 2018, 02:33:46 PM
Hi,
Any updates?
Looking for a Schambergs remedy as well.