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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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Viewing 3 posts - 1 through 3 (of 3 total)
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  • June 1, 2020 at 3:59 pm in reply to: Gabapentin for sweating and pain #51088
    Janice Pritchard
    Participant

    I have taken Gabapentin without side effects for a long time. More fatigue is the only side effect, but it has lessened some of the pain I had been experiencing.

    June 1, 2020 at 3:44 pm in reply to: Luspatercept #51086
    Janice Pritchard
    Participant

    I have had 3 sessions of Luspatercept. I’m hoping it will work soon. An increase in dosage is due for the next round. My transfusions are occurring every week and only have been allowed 1 bag of red cells. There is a shortage of blood and this bad virus going around is causing a shortage of nurses. My red cell count has been in the 6 range. Considering I have had MDS for 12/1/2 years and I have tried EPO injections, lenalidimide and vidaza, with no improvement—-so hoping that luspatercept starts working.

    May 1, 2019 at 4:36 pm in reply to: Swooshing in ears #46607
    Janice Pritchard
    Participant

    I have had MDS since 2008 (11 years). I have been on Procrit, Revlimid, and now Vidaza. My hemoglobin has been as low as 6.0. Once I go below 8.0 I start noticing the swishing. The only remedy for me is a transfusion. When I hear the swishing, I know it is time for another transfusion. Based on what I’m hearing, this seems to be prevalent in others’ journey.

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