Author Topic: Schamberg's?  (Read 236574 times)

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Offline chevstriss

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Schamberg's?
« 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.

Offline Bamawing

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Re: Schamberg's?
« Reply #1 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?
I'm more confused than a mood ring on a paranoid bipolar schizophrenic chameleon in a bag of skittles!

peterb

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Re: Schamberg's?
« Reply #2 on: Saturday January 22, 2005, 03:03:52 AM »
Good luck with 2nd opinion, keep us informed.

Offline Brujo

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Re: Schamberg's?
« Reply #3 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!

Offline North

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Re: Schamberg's?
« Reply #4 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
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline eurohoney

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Re: Schamberg's?
« Reply #5 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

Offline North

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Re: Schamberg's?
« Reply #6 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   
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline eurohoney

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Re: Schamberg's?
« Reply #7 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

Offline North

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Re: Schamberg's?
« Reply #8 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
« Last Edit: Friday May 13, 2005, 05:30:18 PM by North »
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline eurohoney

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Re: Schamberg's?
« Reply #9 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...

Offline North

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Re: Schamberg's?
« Reply #10 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).
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline eurohoney

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Re: Schamberg's?
« Reply #11 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?

Offline North

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Re: Schamberg's?
« Reply #12 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
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline eurohoney

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Re: Schamberg's?
« Reply #13 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!

Offline North

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Re: Schamberg's?
« Reply #14 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.
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline eurohoney

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Re: Schamberg's?
« Reply #15 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...

Offline North

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Re: Schamberg's?
« Reply #16 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 :(
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline cdrcdr7

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Re: Schamberg's?
« Reply #17 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.

Offline Sha

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Re: Schamberg's?
« Reply #18 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:

Offline North

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Re: Schamberg's?
« Reply #19 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.   
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje