Author Topic: Schamberg's?  (Read 132882 times)

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Offline cdrcdr7

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Re: Schamberg's?
« Reply #40 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

Offline Antischam

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Re: Schamberg's?
« Reply #41 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   (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...

« Last Edit: Thursday February 23, 2006, 06:48:57 PM by Wooley »
"Come here, please hold my hand for now
Help me, I'm scared please show me how to fight this.."
                                         Not now - Blink 182

Offline cdrcdr7

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Re: Schamberg's?
« Reply #42 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

Wolfspirit

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Re: Schamberg's?
« Reply #43 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.

Offline cdrcdr7

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Re: Schamberg's?
« Reply #44 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

Offline North

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Re: Schamberg's?
« Reply #45 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   (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
« Last Edit: Thursday February 23, 2006, 06:51:44 PM by Wooley »
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline panthercat187

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Re: Schamberg's?
« Reply #46 on: Thursday March 09, 2006, 09:25:02 PM »
Update, turned out to be an ibuprofen allergy.
« Last Edit: Tuesday July 15, 2008, 04:19:53 AM by panthercat187 »

Offline lisa marie

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Re: Schamberg's?
« Reply #47 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.

Wolfspirit

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Re: Schamberg's?
« Reply #48 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.

Offline Sunshine77

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Re: Schamberg's?
« Reply #49 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

Offline lou175

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Re: Schamberg's?
« Reply #50 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

Offline Sunshine77

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Re: Schamberg's?
« Reply #51 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

Offline Caspian

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Re: Schamberg's?
« Reply #52 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

Offline Sunshine77

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Re: Schamberg's?
« Reply #53 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  :'(

Offline Antischam

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Re: Schamberg's?
« Reply #54 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!



"Come here, please hold my hand for now
Help me, I'm scared please show me how to fight this.."
                                         Not now - Blink 182

Offline Sunshine77

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Re: Schamberg's?
« Reply #55 on: Sunday April 30, 2006, 03:46:38 AM »
This sounds good.....what is colchicine??

Offline Antischam

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Re: Schamberg's?
« Reply #56 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!
"Come here, please hold my hand for now
Help me, I'm scared please show me how to fight this.."
                                         Not now - Blink 182

Offline North

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Re: Schamberg's?
« Reply #57 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.
« Last Edit: Friday May 19, 2006, 06:29:31 PM by North »
Stress?!! If the planets don't hurry around the sun, why should we? ~ Loesje

Offline glava88

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Re: Schamberg's?
« Reply #58 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?

Wolfspirit

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Re: Schamberg's?
« Reply #59 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.