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

[Sunnytwo]

A related discussion, Shamberg's Disease was started.

[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.

[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]

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--  ***@****

[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.

[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.