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

I am diagnosed with 5q

I just started 5mg Revimid

My hemoglobin with 2 units of blood peaks at 9.

I get transfused when I hit about 6.5.

At 9.0 I feel pretty good and could be satisfied with that, but to date, on first month on 5 mg Revimid I cannot sustain that level.

Zero positive response after 26 pills (5 mg).

No side affects but no rise in hrmohlobin.

I have Myelodysplastic 5q Sorry to hear of your Mom's side effects. I now started 250 mg. of Revlimid twice a month. I mostly deal with constipation/diarrhea, stomach pain, & fatigue, I do manage it pretty well, but so far no bleeding anywhere. Hope she can tolerate it & stay hopeful. Stay in touch if you like. Joyce

Hi Joyce, Welcome to Mayo Connect and thank you for sharing your experience with Myelodyplastic 5q deletion. It looks like @anamoner1 hasn’t been active in the forum for several years so I’m not sure if they’ll get notification of your reply. But we have many other members with MDS who take Revlimid or other treatments for this blood condition.
How long ago were you diagnosed?

Hi, I also have been taking Revlimid, 10 mg. for 21 days & off for 7 days it has helped somewhat then about 3 months ago they added 2 injections of Aranesp 200 mg. per month & have now increased it to 250 mg. twice a month, having. some discomforts but trying to work through the process. Hope you are coping as well as possible. Thank You For Posting. Joyce

Diagnosed about 8 months ago. Thank You & this website. Joyce.

I’ve been on Revlimid for 4 months. At first, I was told I would need to take this maintenance drug for the rest of my life. Last month I was told if I stay in remission, I can stop taking Revlimid in 3 years. Has anyone else been told this?

I know the protocols have changed a bit, but my husband took revlomid maintenance after stem cell transplant.he took it for two years. He was part of the original folks who went maintenance to see if it would work. It did keep the myeloma at bay for the entire time. His myeloma stayed undetectable for another year and a half after he quit taking it. Then the myeloma came back and he went back on treatment. These extended treatment breaks really helped him to feel well.
Your doctor may feel because because of your specific disease it would be beneficial to remain on some form of treatment.
Have you discussed this timing with your doctor?

@molly16 Welcome to Mayo Clinic Connect!

As @auntieoakley mentioned, checking with your doctor will be the best bet. We have the same disorder, but there are many variables and nuances. Add in to that, our other health challenges that may accompany that myeloma diagnosis! Our medical teams [and that includes ourselves] are the best source of how to figure things out.

I have been on Revlimid since August 2021. A couple of times we "took a break" for a short time, and right now I am taking Ninlaro [ixazobib] only, with a break from the Revlimid since end of March. At some point we know I will probably go back on the Revlimid, but for now things go along as they go along.
Ginger

Now retaking Revlimid. Tried it 6months ago with no effect, then tried Vidaza with no effect. Now my doc wants to go back to Revlimid with a slightly different dosing procedure. Just finishing the first cycle and hoping for better results. Does anyone have experience with changing dosing?