Connect with others who understand.

  • Learn from expert-reviewed resources
  • Real advice from people who’ve been there
  • People who understand what you’re going through
Sign Up Log In
Powered By
Real members of MyMyelomaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
A MyMyelomaTeam Member asked a question 💭
Florida, NY

Trying to see how long most people last taking revlamid as a maintenance therapy before the side effects become too bad

September 10, 2019
 · 
Be the first to react
A MyMyelomaTeam Member

I started out on 10 mg Revlimid in Jan 2018. Then in Jan 2019 it was reduced to 5 mg. My biggest problem was the low ABS Neutrophils and white blood cell counts. That is why I was dropped to 5 mg. So far, so good on the other counts. My other side effect was diarrhea. I control that with a digestive probiotic and a big bowl of Kashi Go Rise (the one with 13 grams of fiber) every day. My transplant dr. recommended this treatment instead of taking other drugs to control the diarrhea.
I do have fatigue, just not sure if it is from the Revlimid or from the MM or a combination of both.

September 10, 2019
A MyMyelomaTeam Member

My doctor is not giving me Revlimid for maintenance. He said a study shows it can cause a secondary cancer. MM is my second cancer.
I don’t want a third cancer.

September 10, 2019
A MyMyelomaTeam Member

I didn't develop strong side effects until almost a full year on 10 mg of Revlimid taken daily. After which time I developed a severe rash and swelling. My MM specialist determined I should take a holiday from Revlimid, which was the only maintenance drug I was on. I was off of it for another year before my M-Protein levels started to rise. I am now on Daratumumab, Dexamthazone and 10 mg Revlimid (21 days on 7 off). Revlimid was at 15 mg but my WBC and Neutrophils were too low, so they reduced to 10 mg. I seem to be handling that better this time around. Not sure if the rash/swelling will come back in the future.

February 12, 2020
A MyMyelomaTeam Member

I quit after a year and was good for 3.5yrs.

September 19, 2019
A MyMyelomaTeam Member

When I first went on Revlimid for maintenance treatment I stayed on it for 10 1/2 months before developing a full body rash reaction. I then went off of all treatment for just over a year before my MM started to rise. I am back on revlimid along with dexamethazone and daratumumab and it has been about 8 months with no real side effects. I think the combination of dex with the revlimid has help control allergic reactions.

July 16, 2020

Related Questions

View All
A MyMyelomaTeam Member asked a question 💭
Pretoria, ZA

Continue with Facebook
Continue with Google
By joining, you accept our Terms of Use, and acknowledge our collection, sharing, and use of your data in accordance with our Health Data and Privacy policies.
Already a member? Log In