Schamberg's Disease

[norma]

Dr.R...read your answer to Mary's question concerning her daughter who has Schambergs disease and her question about her daughter having pain in her legs..I have had schamberg's disease for almost two years and I also have experienced pain in my legs and also my arms...I recently read a article about treatment with vitamins and bioflavonids on the internet but can not find the article now...do you know anything about this treatment and if it will work...have tried many other things and nothing seems to be working...also before my spots appeared I had gone to a doctor for back pain and had two steroids shots...it was after that that my spots appeared..do you think there could be a connection....Thanks Norma

[Alan Rockoff, MD]

Norma:

What I suggest is that you try to get a more precise diagnosis.

Schamberg's Disease itself causes no other symptoms.  But that doesn't mean you don't have pain.  Perhaps your spots mean something else, or maybe the pain is from a different cause entirely.  (The same question comes up with varicose veins.  Many women have them, and some have leg pain, but it's awfully hard to line up what you see with what people feel, since many people with leg pain have no visible veins, and vice versa.)

A visit to either a dermatologist or rheumatologist (or both) would seem to be wothwhile, if the symptoms are as troublesome as they sound.  Treatment directed at a specific diagnosis often produces more effectiveness.

Good luck.

Dr. R

[Barbara]

This isn't really a reply, it is a question relating to Schamburg's disease.

I did go to a dermatologist and he told me there wasn't anything that he could do for this and said I had to lose weight.  I agree I need to lose weight but would that help prevent any new "outbreaks"?

I just have one area right now that started in Aug about the size of a dime and is now about 2" in diameter.  He also said it might go away in a week or in a year.  

Do you agree with his remarks?  Is there anything other than losing weight (which I am making an effort to do) that will help this condition?

Thanks.

[Alan Rockoff, MD]

Barbara:

I don't know of any effective treatments for Shamberg's either.  I do agree that time may well help.

Best.

Dr. R

[sophie depas]

my son  has schambergs disease and he has experienced pain in his legs too.  The doctors didn't seem to think it was related.  Wehave hadno luck with treatment and it is very distressing.  Well they haven't offered any treatment. Our homeopath is working on it. Have you had any luck? My son got it after a virus and has it for a year.
My email address is ***@****

[Alan Rockoff, MD]

Sophie:

Schamberg's Disease is superficial and does not cause pain, unless 1) the diagnosis is incorrect or 2) your son is upset about the appearance of the rash, and worrying about it is causing pain.  You might want to get another opinion to look into either possibility.  There is no treatment that I know of for Schabmerg's Disease.

Best.

Dr. R

[Julia]

I was also diagnosed as having the disease and my dermatologist says that it may have been caused by taking Stopayne (or rather an ingredient in the painkiller).  Is this possible?  Also, how long does it take to clear up?  I have it on my legs and it is spreading to my stomach.

thanks

[Margaret Tucker]

I suppose this is a bit late, but there is an abstract of the study Norma asked about posted here:

http://www.ncbi.nlm.nih.gov/htbin-post/Entrez/query?uid=10426890&form=6&db=m&Dopt=b

[Satyajeet]

Dear doc,I have been having Schamberg's disease since the last seven years.Although it has given me no problems I would like to know whether physical activities like jogging and playing increase the pigmentations and whether Laser therapy would be helpful?If so I would like to know where one can avail of such a facility.My e-mail add. is ***@****

[bill]

I have been suffering from this for 10 years - it comes and goes once or twice a year - in my case, it is accompanied by intense itching/pain treatable only by massive doses of oral Prednisone and Darvon pain killers. I understand that my suffering is very rare, and I can give you no useful cures. Nobody knows where it comes from, or why it happens - there is no research into it. Cortisone cream can be used to reduce itching, and oral Prednisone can clear up the skin sooner if necessary. As I say, in my case I have seen many specialists and there are no cures. I am currently suffering a very bad attack - keeping your legs elevated can help, as well as not working (easy for the doctor to say...). If you are pain-free, count yourself lucky and wait it out. In case I didn't make this clear - the itching is so intense that it feels to your nerve endings like pain. ***@****

[brion]

I was told a few days a go that I have schamberg's disease. I first started noticing the spots about 8 months ago. There were only a couple of spots then, now I have thousands all over my legs. They do not itch and I am feeling no pain. My question to you all that are feeling pain is how long after you started noticeing the spots did the pain come? I have also heard that this comes and goes. Has any one ever had it go away?

[Linda]

I was just diagnosed this morning with Schamberg's disease.  A month ago I had an oval shaped rash outlined with a red ring just above my ankle.  My GP didn't know what it was and recommended fungal creams, then a cortisone cream.  In the past two days I went from an additional 4 spots on each leg the size of dimes, to nearly 20 on each leg.  Today, the dermatologist diagnosed it as Schamberg's disease.  I have had some itching, but found that 25 mg Benadryl on these occasions releives the itching.  The dermatologist prescribed a cortisone steroid ointment, but said it would cause thinning of the skin, which would be permanent.  Some of the pictures I have viewed are rather scarey, but I feel lucky that this is not life threatening.  So far, for me, this has been mostly a little pain and mostly cosmetic issue.  But I am, none the less, scared about the potential severity of this disease.  I have heard that this disease can be caused by some medications.  I started using the Nicotrol Inhaler when I quit smoking on 1/1/2000 and have taken Ibuprofen on occasion for neck and back pain.  I have also heard this disease is more common in men, but I have very recently begun pre-menopause.  Would like to know if anyone else has had symptoms similar to this, or diagnosis after these medications.  Sure would like to help find a cause and cure by sharing our conditions with others.  Thank you to all of you who have written before me.  I really appreciated finding this forum today.  This morning, I asked the dermatologist if I should make a follow-up appointment, and she said it would not be necessary, there was nothing more they could do for me.  This forum has given me some hope.  Thank you!

[Linda]

I was just diagnosed this morning with Schamberg's disease.  A month ago I had an oval shaped rash outlined with a red ring just above my ankle.  My GP didn't know what it was and recommended fungal creams, then a cortisone cream.  In the past two days I went from an additional 4 spots on each leg the size of dimes, to nearly 20 on each leg.  Today, the dermatologist diagnosed it as Schamberg's disease.  I have had some itching, but found that 25 mg Benadryl on these occasions releives the itching.  The dermatologist prescribed a cortisone steroid ointment, but said it would cause thinning of the skin, which would be permanent.  Some of the pictures I have viewed are rather scarey, but I feel lucky that this is not life threatening.  So far, for me, this has been mostly a little pain and mostly cosmetic issue.  But I am, none the less, scared about the potential severity of this disease.  I have heard that this disease can be caused by some medications.  I started using the Nicotrol Inhaler when I quit smoking on 1/1/2000 and have taken Ibuprofen on occasion for neck and back pain.  I have also heard this disease is more common in men, but I have very recently begun pre-menopause.  Would like to know if anyone else has had symptoms similar to this, or diagnosis after these medications.  Sure would like to help find a cause and cure by sharing our conditions with others.  Thank you to all of you who have written before me.  I really appreciated finding this forum today.  This morning, I asked the dermatologist if I should make a follow-up appointment, and she said it would not be necessary, there was nothing more they could do for me.  This forum has given me some hope.  Thank you!

[Bruce]

i am currently treating Schamberg's disease with 1% cortisone cream to control the itching.  it does not control it. should i ask for a stronger cream? the dermatologist that diagnosed it several years ago told me then that there was no treatment, it would progress and was probably caused by exposure to pesticides. i have had no exposure to pesticides. any other known causes?

***@****

[Al steven Enriquez]

I have been taking a product for immune disorders and it seems to help with the redness. It's called moducare you can look it up on the web. I suggest that you take these tablets and monitor what you are eating and when an outbreak occurs that way you can have an idea what might cause flare-up. Stay away from aspartame and other sweeteners. E-mail me and let me know how things work out.

     I'm a pre-med student that is determined to solve this mystery. It seems that doctors have a "if it doesn't hurt or itch, it won't hurt you" adittude. There is no money in a rare disease that doesn't hurt you physically. But I, from experience, know that it hurts mentally.

[Linda]

I wrote on 3/4/00.  By the end of March, I counted 200 spots on my legs and lower abdomin (abdomen).  In the meantime, I remembered I had started taking Gingko Biloba (for better memory, HA!) on January 1st, so I quit taking it.  Now, I only have a few faint spots left on my legs.  It appears that the Ginseng was the culprit in my Schamberg's Disease.  Hopefully, this has ended for me, but I will keep in touch, should anyone have questions or comments.  Hope this can help someone!!

[Geoff H.]

I have had Schambergs Disease or PPP for over 12 months due to a reaction to Enalapril prescribed for high blood pressure.The itching was very irritating, but the doctor could only give cortisone cream as a relief. This also increased the itch to a stinging sensation. During a consultation with a skin specialist, an off the cuff remark by the medic about 'I should try horsechesnut seed extract' made me look up various sites on the NET, which gave me some hope of relief. I have been taking a formula made by Bullivants in Australia which includes horsechesnut seed extract for about 12 months and it has proven to be some of the answer. I still had some of the 'rust'(on my feet and lower ankles) due to the capillary leakage, so I have added quercetin (a bioflavinoid which improves capillary strength) 200mg. This appears to be reducing the rust marks and has also further reduced the sensations of itching and the occasional sensation of an 'insect/mosquito bite'which is apparently another of the bothersome symptoms.  Best of luck..

[Geoff H.]

To Dr R.
I have had diagnosed PPP or Schambergs disease for over 12 months
after a reaction to Enalapril, and all the Dr could prescribe was a cortisone cream and suggested that I may have to use surgical stockings because of the variscose veins which also was the result of the reaction. Only by accident did I discover that a herbal remedy may be of assistance when the second dermatologist made an off the cuff remark about using horse chestnut seed extract. After some research on the net I have found HSE is used on the continent for varicose veins, varicose eczema, PPP or Schambergs disease. I have been taking a formula, made by a company in Australia, which contains HSE. This has reduced the itching to a low level, and also has reduced the pigmentation. Recently I have included the bioflavinoid Quercetin and this appears to be reducing the itching to nearly zero and the pigmentation (rust spots)has nearly disappeared.
Best of luck G.

[phyllis]

My dermatologist says that I have Schamberg's disease on my leg and not to worry about it. I cannot find much info on this disease. Exactly how do you get it and how can I keep it from spreading? Will it go away?
Thanks

[Linda]

I wrote in March and April.  Before then, I had over 200 spots on my legs and lower abdomen.  Shortly after I quit taking Ginseng, the spots disappeared.  I have had no recurrences, to date.  Initially, my dermatologist prescribed "Dermatop 0.1 percent" (prednicarbate) for the itching.  It worked for me, but this ointment will thin your skin so you have to be careful to apply it only on the spots and let it dry before getting dressed.  I applied it in the morning and evening.  It was time consuming, but I no longer itched.  My doctor also told me that the symptoms of this disease (although they don't know the cause) could be caused by medications.  If your diet, vitamin or medication intake changed before your symptoms appeared, you should consult your doctor.  Hope this helps.

[tori]

I was diagnosed with Schamberg's disease about three months ago, after a virus. I had also been using Azmacort for my asthma for about 10 years. I changed to Flovent and the patches seemed to go away and become lighter although they haven't gone away entirely. Is there a connection between my medication and the disease? I was also under an extreme amount of stress when they appeared, could that be a cause? Also, will it be with me forever and will I have any further health problems from Schamberg's?

[tori]

I was diagnosed with Schamberg's Disease three months ago after a virus.  I have also been on Azmacort for my asthma for 10 years and switched to Flovent after the spots appeared. They began to go away and become lighter. Is there a connection between my medication and the spots? I was also under a lot of stress during the time they appeared, could that be connected as well? Is this something I will have forever and will it lead to other health problems in the future? Thank you.

[patricia]

I HAVE BEEN DIAGNOSED WITH SCHAMBERG DISEASE.IT IS MOSTLY ON MY FEET AND SHIN PART OF MY LEGS. I REALLY HATE IT I LIKE I AM A FREAK OF SOME SORT.I AM VERY SELF CONSCIENCE ABOUT MY FEET AND LEGS THANKS TO THIS DISEASE. I REFUSE TO GO BAREFOOT AND I WON'T GO TO PUBLIC POOLS EITHER.IS THERE ANYTHING TO GET RID OF THESE DISGUSTING BLOTCHES?

[dorothy]

I have just been diagnosed with Shamberg's Disease.  It started on my legs and has very quickly spread to my stomach.
    In my reading it has been noted that diuretics sometimes cause rashes to appear.  Have you an opinion on this?

[gavin mccabe]

I have got schamberg's, and also suffer with leg pains.
I have been advised by my g.p. to wear support stocking, and apply a barrier cream, which alieviates the itching i get.
The disease started across my feet and is now up to my knees. As the symptoms increase, so dos the pains.
I think this is due to the fact that the blood is losing the iron, making the muscles weaker.
Any comment

[Freddie Tayrien]

I have had Schamberg's diesease for almot 3 years. I agree with people who say they have leg pain. The pain is almost always with a new spot.

[kim]

I was finally diagnosed with Schamberg's disease yesterday after four months of hell.  I have a very extensive case that is covering my legs, feet, arms, hands, abdomen and lower back.  My doctor informed I have about as bad a case as he has ever seen.  I am a 37 year old woman and I need some help trying to weather this.  My doctor suggests I continue to treat with ointment and take Zyrtec to control the itching.  I haven't had a decent night sleep in months because of the discomfort(yes, there is pain also) and I avoid leaving the house because of my freaky appearance.

What I want to know, is there something else I can or should be doing?  I am having a very hard time dealing with this.  Just because this disease doesn't kill you, doesn't mean it doesn't affect your life.

I would appreciate any suggestions anyone is willing to share.  I went from looking like a normal young woman to someone I don't even recognize.  

Thank you for taking the time to listen to my story.

[Fred Tayrien]

4 weeks ago I had a very bad nose cold and had to take prednisone for the swelling in my nose. 1 week after taking the pills my legs started to look much better. After 2 weeks all my spots were healing. This is the first and only time that my schamberg's healed up at all. I took 3 20 mg pills for 2 days and 2 for 3 days. My legs looked good for 1 month after I took the pills before it started to break out again. All they ever gave me was clobetasol propionate ointment usp,0.05%. It never did help much. I hope some one might make use of the information. My e-mail address is ***@****

[Ken]

I have also been diagnosed with Shambergs.  My initial onset was 5 months ago starting on my ankles.  It has progressed up my body and now covers my entire body including all sensitive areas. I have continually used Kenalog cream on my face to keep it from looking as bad as the rest of my body.
   Like someone else on this site I am in misery.  Can't get a minutes peace from the continual pain and itch.  No sleep and no rest really takes it toll after months and months.
   Along with many of you I certainly hope someone can find a cure.

[Ken]

re. my post above.  I would be interested in exchanging any symptoms, remedies, information of others progress in treating this disease.  ( for instance )  I have found that using Petroleum Jelly will make the biting pain worse. However I have found that Witch Hazel takes the itch and bite away but I don't know for how long as I just got it this evening.  Last night I got some relief with Benadryl spray but my skin was cracking dry this morning so I will try Benadryl cream tonight. Would like to hear from Kim whose entry above lists rash about as severe as mine.  My e-mail address is--  ***@****

[Kay]

I am curious if anyone has had been diagnosed with Schamberg's disease simultaneous with other problems.  I started getting the spots one year ago, had biopsy and diagnosis.  Six months ago my leg/ankle started swelling, then I developed a severe rash on my legs that dr biopsied and came back as contact dermatitis or drug reaction.  Meanwhile, my blood pressure has been rising (I've always battled borderline high blood pressure).  Complete blood count, metobolic profile, SED rate all checked out OK.  Imaging of leg shows no blood clots.  Only medication I am on now is birth control pills I have been taking for 13 years.  Any similarities out there?

[Ken]

Reply to Kay and Update......  My Dr. did discover poor circulation in left leg... ultrasound showed blockage in upper left leg.... will see specialist about repairing this next week. My biopsy showing Schamburgs was from upper hip area after it had progressed to the Itching Purpura stage.  Good news is I turned very dry 3 days ago... Itching and biting pain stopped the same day.  Have cracked and flaked off some portions of my body 2 times already ( some sensitive and last areas to fill in none yet but can tell they are going to ) with some change in color each time but can tell that I may flake off 2 to 4 more times.  Just very thankful that I think I can see the end of this episode at least.

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