mds 5qdel

[John Dyer]

I was diagnosed mds 5qdel almost 3 years ago. I have been on Revlimid almost 3 years. Started with 10mg daily. Developed flu like symptoms. Taken off for 6 weeks symptoms eased but did not go away. Restarted at 5mg for 21 days then off for 1 week. I still get body aches sometimes very intense. I don’t know if it is the drug or 5qmds.
If anyone has experienced this problem? If so I would like to hear from you.
John
Age 64

[Dennise Cranfield]

I was diagnosed with mds5qdel 3 years ago too; in New Zealand. I have been offered no treatment, just told to wait and see. My neutraphils were down to 0.6 2 weeks ago; I have monthly blood tests. I have complained of fatigue and aching joints but have been told by both my GP and my haematologist that these having nothing to do with MDS. It is interesting to note that you suffer from body aches. I neutraphil count dropped from 1.1 to 0.6 within a month of stopping all my supplements which I could no longer afford to buy. I gave up my job 3 months ago because of the chronic fatigue. Has taking the Revlimid helped you to maintain reasonably good white/red and platelet counts?
Dennised
Age 60

[californiagirl]

I was diagnosed with 5q (hypocellular bone marrow) a year ago, although I think it had been going on for at least two years. I was started on Revlimid in October, 5 mg, every day. My Hb had dropped to just below 10 and my rbc was down to 2.95 before I started. Within 3 weeks my body responded and now I’m within normal range. My Hg is now 13.5. I do notice that my whites did not rise much, but I’m hovering at low normal, platelets are within mid-range when they used to run high normal. Overall my experience has been good. I did have various symptoms that come and go that the doc doesn’t attribute to the meds, but I never had them before (chest heaviness for one). Right now having gastro problems but again they say it has nothing to do with it. Never had body aches, just an initial rash that quickly resolve with Benydrl. Overall, I’m doing well. I still golf and climb 5 flights of steps. I thank God every day for my health and my body responding to the meds. Stay positive and active no matter how you feel.

[John Dyer]

Dennise The Revlimid has kept my red and white count good, however my red cells are below normal but Dr. is not worried.
During my 7 days off Revlimid I still have body aches. My Dr. is not sure why I have the body achesand I can’t find anything about the aches except it can be a side effect of Revlimid. I hope we can find somthing about 5qdel mds body aches.

John Dyer

[Deborah]

John, I was on Revlimid 5mg and 10mg at various intervals for 3 years and I never had any aching or pain. I’ve been on Vidaza for a year now, and starting having lots and lots of bone pain, joint pain, and generalized aching since month 8. Never before. My oncologist said that the meds are stimulating the bone marrow to do its job better which causes the pain. I look at it as a sign that the drugs are working! Maybe that isn’t true! They suggested I take Claritin daily along with Naproxen (or whatever OtC pain med I do well with)if needed. It keeps the pain level manageable. Moving seems to help a lot. Even standing. Lying around seems to be the worst thing I can do. I hope this helps you. I also read that they were showing some results using Zyrtec as well. The literature talks about the histamine released when marrow stimulated creating the pain while the anti-histamine gets rid of it. Makes perfect sense to me! But maybe your pain is from the MDS or the Revlimid. We all react differently to the same drugs and conditions. This forum is proof of that.

[John Dyer]

The Dr put me on a anti-histamine but it did not work. I see the Dr.next month maybe we can figure out what is going on. Thanks for the input.

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