I was off Revlimid for 2 months with no increase in m-spike. My Dr is considering taking me off all treatment due to low blood counts. They are going to do a bone marrow biopsy first to see if there’s any active disease.

Clara, I used to worry about missing even a dose of Rev. Now, for the past year, I have been on only 5mg, 21/14 instead of 21/7 and nothing has changed. I used to get pretty low in my rbc and even my whites and absolute neuts but they always manage to improve it. I am sure they will yours as well. Good luck!

I have been off of Revlimid because of low white blood cell counts several times. Recently I was taken off of it for 2 months because of chronic angioedema, and my m-spike did not increase. Then I was switched to Pomalyst, but may not be able to stay on that either because of low blood counts. We shall see.

I was on Revlimid for a year after initial diagnosis, but it had a negative impact on my heart. I’m doing better with a pacemaker/defibrillator and now I get Darzalex and IVIg every 4 weeks. My numbers have been very stable on this protocol since 2020.

As you probably know, Rev does have an accumulative effect over the years. I developed almost uncontrollable diarrhea...they reduced me to 10mg after about 2 years post dct, then 5mg 21/7 after 3 years and then 21/14 for the last couple trying to hrlp. Finally, I went to a gastroenterologist snd she put me on budesonide and it gave me back my life...an immediate cure. Best of luck to you!