I was told by a doctor that studies are being done as to the length of time We stay on revlimid during maintenance.
My husband has been on Revlimid since he started treatment 4 years ago. Doctor said he will be on it forever … it’s now 5 mg 21 days out of 28 days. Everything is going well for him so far.
I was in a clinical trial taking Revlimed, and I’m fine. I did have periodic diarrhea, but now that I’m off Revlimed and in remission, I’m fine.
I have been on revlimed for 2 years
Doing ok
Good luck to all and many hugs
4 years I was on revlimid. My dr wanted me on 10mgs. I could stand it. So 5 mgs. I started April 2019. My moods changed, my muscles craped, my bones hurts. Walking or movements were hard. The big one, my brain was foggy. Diarrhea was totally out of control. I flew into texas to visit my grandchildren. Getting off the airplane extremely difficult. I was afraid of the diarrhea so on Sept 11 I took myself off revlimid. I could not afford diarrhea on an airplane. I sent a message.
To my doctor and from there she took me totally off of it forever forever. Then I noticed my brain wasn't foggy? Movement was night and day. For me at this time revlimid was killing me. Truth.
Be told I never told my doctor half things I was going through. Truth be told I truly hated her. Now it's totally different.I appreciate my doctor and I am feeling so much better. I hope that no one else goes through these types of side effects on that drug. I was on it 4 years and 5 months. Not counting Chemo. Plus oh my gosh, my lab work is so much better. kidney numbers are fantastic.My liver numbers are good and i'm still in remission.
I was in the clinical trial about three years and was in remission so I was taken off Revlimed. entire time. We’ll see how it goes when I go for my follow-up appt. after six months.