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Mouth sore and skin rashes with MDS?

Home forums Patient Message Board Mouth sore and skin rashes with MDS?

This topic contains 9 replies, has 6 voices, and was last updated by  Janice Sheppard 8 months, 1 week ago.

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    Diane Lafontaine

    I was diagnosed in Aug 2017 with MDS INT-2 I have had mouth sore since before diagnosis (none before) and a skin rash started in May on my hands and now on my feet and legs. Anyone else dealing with this?


    Nancee Noble

    Are you sure it is a rash? If it feels smooth it could be Petechiae. I am having it on my legs.


    Diane Lafontaine

    Not smooth, very rough. very itchy, red and hot to the touch. looks like dermatitis but the doctor said that it’s not. Since I have never had a rash in my life I was wondering if it is part of the MDS.


    Roger Hennicke

    In reference to your skin rash. Look up Grovers disease and see if the rash looks similar. I had this all over my back and chest. No local Dermatoligist could figure it out. Mayo at Jacksonville diagnosed it right away. It really is a pain and itches profusely. They did a skin biopsy to make sure. Started topical steroids and that is not a problem anymore. I was told that because of the weekend immune system as a result of MDS you are more susceptible to this. Hope this helps.


    Diane Lafontaine

    Thanks Roger. I looked up Grovers disease but it doesn’t look like that at all. It is a red, rough, thickened skin rash that is hot to the touch and very very itchy. it first appeared on my left hand in May then went to the right hand. that went away after 4 months but went to my feet and now up both legs. seems to do a certain time and goes away. I have tried numerous things to help heal it but to no avail. I was just wondering if anyone else was dealing with this along with MDS.



    Hi Diane, Other MDS patients with mouth sores have found Biotene oral rinse helpful. There is also Magic Mouthwash – read more about it on this link Make sure to let your treating hematologist know that you are experiencing same. I hope this helps.


    Diane Lafontaine

    my hematologist did prescribed Magic Mouthwash that I will try starting today. thanks.


    larry Dunn

    I am a 74 y.o. male (MDS RARS intermediate 2 CR 7 del) diagnosed 16 months ago. Over a year ago they gave me a platelet transfusion which must have been contaminated somehow and I became refractory to platelet transfusions. At the same time I developed this same rash you describe on my lower leg. It is red and bumpy with flaking skin. My hgb was down to 40 and platelets 3. I thought I had HVGD from the transfusion. They did a biopsy at the cancer center which was inconclusive. Then they diagnosed me with hemolytic anemia and put me on prednisone 50ml and the rash started clearing up. There was terrible itching all over but especially my forearms which also learned up completely with the prednisone. But they tapered me off and the symptoms returned. Dermatologist couldn’t diagnose it but prescribed Betaderm steroid cream which helped too. Oncologist can’t explain the rash. I also have been diagnosed with CLL which I probably have had long before the MDS but no symptoms of enlarged lymph glands. I am starting to wonder whether the rash is actually related to Mycosis fungoides. Mycosis fungoides is a form of T-cell lymphoma. Skin cancers are more common with CLL than MDS. I also have the same mouth sores which at one point became infected and I was on a course of antibiotics which cleared some of the sores leaving scar tissue but now I have another sore which is infected on my inner cheek. Oral surgeon prescribed Peridex mouthwash containing chlorhexidine gluconate which really helps. There is also another mouth cancer called Mchlorhexidine gluconate.
    Another possibility is Myeloid Sarcoma or chloroma common in late state leukemia. I am sure I have AML now but need another bone marrow biopsy to confirm it. I have refused chemotherapy and I don’t know what the purpose of a biopsy on my mouth would be.
    Hope this information helps.


    Diane Lafontaine

    Thanks Larry for your answer. My numbers are almost all back in the normal range so I don’t think that I have progressed. Your mouth sores and rash sound familiar. I will ask my specialist about these things next time. thanks.


    Janice Sheppard

    i’ve developed itchiness out of nowhere kind of everywhere, starting on my face, in december, accompanied by small bumps on my belly, arms, face. face is the itchiest, then scalp, then my body. finally saw dermatologist on january 3 who is calling bumps folliculitis (i have no hair on my belly – she asked me if i sweat), and the rest of it an allergic reaction. i hope that’s all it is. i have clobetasol shampoo, and hydrocortisone ointment for my face, but can’t use that stuff forever. i don’t think anyone so far thinks its MDS related, but neut count was 0.43 in november. i looked up grovers disease and the bumps do look like that, though a much milder presentation.

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