MDS – dermatology issues (Sweet's Syndrome?)

[William Eagle]

I wonder if anyone has lesions/sores caused by MDS, and if they take any pill or cream for it?
Also, does your main MDS doctor take care of all the spin-offs you can have from MDS (including autoimmune and inflammatory issues, skin issues, etc). It’s frustrating because it seems like the different conditions (linked to MDS) require different doctors.

Bill

[Anonymous]

Hi Bill, Where are the lesions/sores located on your body?

• This reply was modified 7 years, 2 months ago by .

[William Eagle]

Different types, occasionally on my legs, arms, now elbow. One on my lower back. I haven’t had them in a while — the infusion Remicade usually keeps them suppressed. They can sting, and usually go away in a few weeks…my back started itching a few months ago, and my primary care doctor says she knows MDS patients who itch (there may be a histamine reaction?). I can send you a photo if you send me an alternative e-mail. Here’s one for me — I don’t mind getting e-mails here: aigle@verizon.net.

[Anonymous]

Dear William,

Hematology/Oncology MDs will care for most aspects of MDS but often will refer to other sub-specialty MDs if needed. I would recommend that you get a second opinion from a dermatologist. If you do not live close to an academic clinic, it may be worth the travel to get a good answer for the skin issues.

Remicade is an anti TNF infusion approved to treat Chron’s disease so I must say I am not familiar with the situation you have described.

I hope this helps.

[Author]

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