Information on Schamberg's Disease

[Bobbalou]

I am a 32 year old woman who was diagnosed with Schamberg's Disease by both the City of Hope and Cedar Siani via biopsy.  I have had the rashes on my legs since 1996, with only a couple spots fading, but it has spread to my thighs now.  I have been to several dermotologists, so I am cofident that I have been diagnosed properly, however, in addition to the rashes, I also get sores.  They start like a bite, red and swollen, and then turn into an open wound.  They burn and I have discovered if I cover them they scar worse, so leaving them exposed to dry works best, but they can take as long as two months to heal.  They are also quite deep, maybe 1/8 to 1/2 inch.  It seems to be forming from the inside out, but looks like acid was dropped on my skin.  They never scab over, just eventualy heal into a scar resembling a burn.  I don't mean to be too graphic, but it looks like my flesh is melting away.  Kind of like a burn I suppose.  I spoke to my dermatologist and he said I just have a severe case, but I have never encountered anything in the research books describing sores.  Have you ever heard of sores associated with this disease?  Also I was told there was no cure, but I am seeking many different treatments in hopes of finding one.  The bioflavinods seem to stop it from  spreading so rapidly, but is there anything else that you have heard of?  Are there any topical creams which seem to work?  My main concern is the sores, as now I have two on my elbow and two on my hands.  It terrifies me to think they could spread to my face.  I would greatly appreciate any opions you may have about the sores, so in case they are something unrelated to Schamberg's I would know what to have my doctor look into.  No one seems to know.  I have had extensive blood work done, and I am completly healthy.  Please help me, I would greatly appreciate your imput.  Thank you so much.

[Raymok]

A related discussion, Schambergs disease was started.

[jrodreves]

A related discussion, Schamberg's disease was started.

[derek]

In recent times a lot of work has been done on honey and its built in healing powers. There are many cases where honey worked in healing wounds where anti biotics failed. Some types of honey work better than others and a lot of research has been done on it here in Australia, to the  point where it can now be purchased in the drug store. Look into it and give it a try. You have nothing to lose.
Derek

[Alan Rockoff, MD]

You are correct to assume that Schamberg's disease does not produce sores.  It also does not produce lesions on the arms.  The condition refers to an unsightly but otherwise unimportant inflammation of the capillaries, or smallest-caliber blood vessels.  This produces tiny, flat, red-browm spots on the calves and legs.  There is no effevtive treatment, but I have seen cases go away on their own.

The question therefore is: since Schamberg's diseases doesn't cause sores, and since you have sores, than something else must be causing them.

Obviously, I cannot say without seeing and testing you myself.  However, I will hazard a suggestion which accords with my own experience in similar situations, which I encounter rather often (that is: sores with no apparent cause.)  I make this suggestion with some trepidation, because people sometimes are reluctant to accept even the possibility.  Yet I will do so, because you have clearly been examined and tested by competent personnel, who found nothing else.

My suggestion is: Are you, from a sense of itch, or concern, or worry about spread, rubbing or picking at spots on your skin and promoting their formation into sores?

Can this happen?  Indeed it can, since I encounter it several times a week.

What should you do?  

1) Cover all sores with a band-aid and apply bacitracin ointment once a day, when the dressing is changed.
2) Under no circumstance should you rub, pick, scratch, or minutely examine any part of your skin, even a little, even once.
3)  If you still develop a sore,  show the pristine, untouched lesion to a dermatologist for biopsy.

I hope my suggestion is helpful and does not offend you, which it most certainly is not intended to do.

Best.

Dr. Rockoff