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Is anyone here taking Revlimid? If so please share with me
Blood Cancers & Disorders | Last Active: Nov 25, 2025 | Replies (75)Comment receiving replies
I am having severe gastrointestinal problems as a result of Revlimid. I am down to 5 mg 3 weeks 1 week off. I’ve been taking it for 4 1/2 years. My bloodwork is still continually abnormal even though I had a bone transplant 4 years ago. I worry about Revlimid doing more harm than good since most of the time I feel worse now then I did prior to the stem transplant. My body took well to valcade, radiation, chemo even survived, with some difficulty the transplant. I’ve changed my diet over and over and over and get no relief. I am now taking cholestyramine to help with bile acid. Has anyone gone through this and stopped Revlimid and finally felt better?
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My husband is also currently on 5mg of Revlimid. His doctor dropped it from the 10mg dose that he had been on for maintenance for almost 5 years (SCT in Feb 2020). Luckily it has worked well and he has no trace of MM. His doctor is now considering taking him off completely as the side effects are affecting his quality of life (GI issues and fatigue). He recently had Moh’s surgery for skin cancer on his face that is also going to need radiation.
We were told that years ago they weren’t that concerned with Revlimid side effects as life expectancy was only about 5 years but now it is something they’re looking at. As his numbers are all really good, they think maybe there is no need for him to continue taking it and risking a secondary cancer. If they take him off it, I will be sure to update you on his status.