What are your experiences with lenalidomide (Revlimid) for MDS?

@ruthshow1 I was diagnosed April 3rd and started Lenalidomide the 19th. My doctor is in Chicago my HG was 9.3 I take 5 mg everyday. 3 days ago was hemoglobin was 14 and my RDW is not w 15.9 it was 19. Only problem is my platelets are 72. I go back Tuesday anxious to see what she says.

Thanks. Let us know what the doc says.

anyone taking lenalidimine for myelo dysplastic syndrome?

Welcome, @urban60. I moved your question about lenalidomide (Revlimid) for myelodysplastic syndromes to this active discussion:

- What are your experiences with Lenalidomide for MDS?https://connect.mayoclinic.org/discussion/what-are-your-experiences-with-lenalidomide-for-mds/

I did this so you can connect with members like @jrsav @gingerw @tristram @coynelane @darlaburley @5qdeletion @marco88, who can share more about their experiences with lenalidomide (Revlimid) for MDS or other blood conditions.

See all discussions related to Revlimid + MDS here: https://connect.mayoclinic.org/search/

Urban60, are you about to start treatment with lenalidomide?

@nbadry what are your platelets? I have been taking Lenalidomide since April 21st. 5mg everyday my numbers are all back to normal besides my platelets which were 72000 last week. Bloodwork in 2 weeks.

@colleenyoung @urban60 I was on Revlimid from August 2021 to March 2025, fluctuating from 2.5 to 5 mg doses during that time. In November 2024 my team and I added in Ninlaro [ixazomib] 2.3 mg. On the Revlimid, which was 21 days on, 7 days off, there were several unpleasant side effects, including the "Revlimid rash" and diarrhea. I am being treated for multiple myeloma, and am also a kidney dialysis patient. My situation may not be the most common one around, but working together with my team, we have developed a workable solution.

While each of us has our own journey, and story, I am glad you are reaching out to hear how others experience the medication routes. How are you feeling today?
Ginger

@githanks for your input Ginger. I am on my 4th month on Lenalidamide 10 mg. 21 day cycle.So far no side effects. I feel just fine. No rash. My platelets dropped to 113 the second month but are back to normal now. So nice to have someone to talk to who has taken this drug!

@jamie14
My platelets are stable at about 100, neutrophils 1.0 and Hg 13 (almost double what it was before starting lenalidomide). I get lots of small bruises but I have not had infections, apart from one cold this year 🙂 I've been on 10mg for 7 months. Had a marrow biopsy in August which showed an excellent cytogenetic response and normal karyotype...so the lenalidomide is suppressing mutations very well. At about the 5 month mark I developed severe diarrhoea which persisted. It really impacted my quality of life. However I started on cholestyramine which has worked very well, as long as I don't eat much fat. (Apparently the diarrhoea is due to bile acid malabsorption caused by the lenalidomide.) I get blood tests once a month and need 6 monthly marrow biopsies (as a previous one in April showed some new genetic mutations). I'm so thankful for the lenalidomide and the medical care I'm able to access. Hope that's helpful to you, and anyone starting on lenalidamide. Nicole

Thanks Nicole. You've given me some confidence. I-m in my fourth month now and my HG went from 10.2 to 10.9. platelets are 170. I have not had another biopsy since the original diagnosis.

@nbadry Thank you for sharing. I get another BMB in October will be 6 months since start of Lenalidomide 5mg every day. my platelets today were 79 three weeks ago 72. Interesting on the diarrhea at 5 months mine just started getting worse.glad you are doing well!