Is anyone here taking Revlimid? If so please share with me

I have MDS with the 5q variant and another variant as well. Taking Remlivid for the second time... so far, no effect. Transfusions are given about regularly when I am below 7. Told to hang in there, but not seeing any results is frustrating.

I don’t know anything about MDS but my hubby (who has multiple myeloma) has taken revlomid at higher doses with dex, which worked a lot faster, than the lower doses he has been on. He has also taken it with Ninlaro and dex, which also worked pretty fast but wasn’t tolerated quite as well.
I am crossing my fingers the higher doses work as well for you. Is there other drugs they use with the revlomid to treat MDS?

I have been on Revlimid since the beginning. Weekly treatments I was taking 15mg, 21 days on 7 days off. I got a break as i prepped for my Stem Cell and about a month after my Stem Cell. Now I take 10mg everyday as part of my maintenance program. My test results are very good, Bone Marrow shows nothing, blood tests just show the fast pro injection I get monthly. I was hopeful I could start cutting back but was just told I will be on Revlimid two years post Stem Cell. I do well with the Revlimid, no real side affects, it's just a constant battle to keep my blood counts and immunity levels up.

I’ve been on Revlimid 10 mg every day for 4 months. I’ve had no real side effects and was told if I stay in remission for 3 years, I can come off it. So that was good news because after my diagnosis last year I was told I’d be on medicine for the rest of my life. I’m seeing my oncologist this week and I’ll ask if this is something new.
I’m still processing the fact that sometimes the doctors can’t give me an answer because “everyone and their situation is different”. I read a lot and everything says the same thing so soon I hope to accept this fact. I go to the multiple myeloma support group monthly and that helps. Good luck to you.

Hi, Enjoyed your post. My name is Joyce, I am currently taking Revlimid 10mg. for the last few months along with injections of Aranesp 250 mg. &. Vitamin B-12 every 2 weeks, but still needing blood transfusion on an average of every 4 to 6 weeks....How long has it taken for your remission? Was so happy to hear of your success & hopes for the future. Thanks, Joyce

Hi, thank you for posting. My name is Joyce I also am taking Revlimid but only 10 mg. for 21 days & off for 7. About 4 months ago they added an injectable drug named Aranesp & increased it to 250 mg. every 2 weeks, But still needing blood transfusion on an average of 4 to 6 weeks, I also get injectable B-12 at the same time. Sure hope this plan can make me Independent of blood transfusion. Thanks, Joyce

Dear Dave,
My mom took Revlimid last year and experienced severe itching on her body. What we did with the nurse was change her pajamas and clothes to natural fibers like cotton and linen instead of synthetic fibers and use Acid Mantle on her skin every day after showering. Whenever she had itching on her legs or ankles, she would apply Acid Mantle, and it was very refreshing, allowing her to sleep peacefully. I decided to buy Bayer's Acid Mantle soap and use it for her daily bath. Also, the Eucerin shower products made her itching almost disappear, allowing her to continue her treatment. I think in our case there was a strong cutaneous component. A few months ago, her treatment was changed to daratumumab, and it has been very beneficial. Tomorrow, she will have X-rays and an MRI to see how her bones are doing. Good luck to everyone! Caregivers and patients.

It took about 6 months of Darma, Velcade and Dex to get to the degree of remission needed to get chemo and a stem cell transplant. I got both in January of this year and after 100 days I was told I am in complete remission and was put on Revlimid.

I’ve taken Revimid for almost 3 yrs along with an injection of darsalex faspro, and acycovir (plus D, B6, B12) and some other stuff after first diagnosis of MM. Revlimid has always been for 21 days then off 7. Started at 20mg and reduced consistently to now only 5 mg every other day for 21, then off 7. Daraslex was weekly, then biweekly. and now monthly. Have been in remission for about a year. Other than some fatique, no other significant side effects.

I take 20mg each day for 2 weeks for MM then a week off. I don’t really know how it is working as I have other drugs too.