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Revlimid and mouth sores

Home Demo forums Patient Message Board Revlimid and mouth sores

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    Paula Voell

    Hello MDS community,

    I am writing to see if anyone else has had mouth sores as a side effect of Revlimid. I have been on the medication since May and have had remarkable results in terms of hemoglobin (my low was 6.2 and yesterday it was at 13.4). So that’s all to the good.
    I just developed mouth sores and a swollen cheek and lip. I will be taking an oral “swish” as they call it.
    Anyone else gone through this? What did you find helpful?
    thanks. Paula Voell

    Joe Catalano

    Very encouraging that your hemoglobin raised so much gives hope to all of us. I have not been treated I am on wash and wait after one year of diagnosis of MDS. Is swelling in anticipated side effect?
    May I ask if your energy levels have increased due to improved hemoglobin levels.
    Thank you Or your input on your question


    I’ve had little sores in my mouth that come and go. Only started recently. I do get some rash on my face and upper chest as well. Annoying but tolerable. My recent hemoglobin was 141 (which translated in US terms is 14.1) so I’m going to continue as long as it keeps working.
    Joe, I’m a deletion 5q patient for almost 3 years and even though my hemoglobin is high I still lack energy. I worked to regain my energy after Mt diagnosis but have had to except that it will never be what it was. I do my best to enjoy as much as possible but in smaller quantities.🤷‍♀️

    Paula Voell

    Reply to Joe regarding energy.

    Yes, I have considerably more energy with the rise in hemoglobin. Today we walked a loop at a park (twice). In previous visits, I only ventured around once and sometimes had to stop for a rest.
    So, I am at what my pharmacist said is the “sweet spot” meaning the correct dosage and no significant side effects.
    Paula Voell

    Lucena Nicolas

    I actually have taken revlimed from March 2022 until Sept. 2022. I experienced having mouth sores then and now. Redlimed help my red blood count. It was steady at 10 up from a 6. I find that as long as my blood count was up then my energy was also up. But I had to stop taking Revlimed because my liver was being negatively affected

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