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Living with MDS

Blood Cancers & Disorders | Last Active: May 17 5:49am | Replies (68)

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<p>Hi just wondering if anyone with MDS has experienced rash on face and neck. I have had this recently in the last few weeks a couple times. Is it a sign of progression and should I call my oncologist? Anyone relate?<br />Thank You Brenda</p>

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Replies to "Hi just wondering if anyone with MDS has experienced rash on face and neck. I have..."

I don't know if I would call it a rash, but a couple of times my face has had some red coloring show up. On one occasion my entire face and neck area were red. It looked like a mild sunburn. It resolved itself within a couple of days so I did not seek any medical attention.

Definitely, if you have had a bone marrow transplant you need to at least take a picture of what you are worried about. A rash is the first question the doctors ask at each visit. My husband had a rash on his scalp which was nothing but the rash that came up on his arms was graph vs host disease. Serious stuff so if in doubt always take pictures and report it. You are your best advocate. Take care.

Ironically I just reached out to my husband’s team to ask about a new “rash” on his face and neck, more like small bumps and not too red (he is ~Day +190 from BMT for MDS). He has not needed transfusions for the past 2-1/2 weeks but hemoglobin is at 6.9 so they ordered 2 units of blood for today. I sent pics in to the NP and she said bumps are not related to low hemoglobin and recommended using hydrocortisone which he started last night. Too soon to tell if if made a difference or not. Bear in mind each case is obviously different but I wanted to share nonetheless. Definitely contact your care team and send pics; good luck💜.

I am curious to know what signs, symptoms, or tests results appear for MDS to require treatment or transplant. Did you feel ill enough to know or did a test result show the change? Also what is the longest someone has lived on watch and wait, years or decades with MDS?
Thank You for sharing Brenda

Yes, my husband has MDS and he has had a rash on his face, neck, back, chest, arms and a bit on his inner thighs. He was treated with Prednisone for a week and it cleared up but when he stopped it came back. He is now on a steroidal cream and it is helping but it is also clearing up and returning. We are trying to figure out the cause. I’m wondering if it is from Luspatercept (sp) which his hematologist wants him to try again which he was taking before he went into the hospital for a UTI and blood infection. It also causes shortness of breath and severe fatigue. Is your husband’s rash itchy?