5q minus syndrome

[audrey]

I suffer from 5q minus syndrome as well as osteoarthritis and I have been prescibed 5mg Revlimid. I suffer terrible muscular pains especially at night. which is relieved a bit if I take Amitriptyline. What I am trying to establish is the cause of my terrible pains. So I would like to know if any fellow sufferers of 5q minus have this symptom, or is all due to my other problems.
Thanks
Audrey

[jimkufis]

Hi Audrey, Jim Kufis here. I also take Revlimid and do not have the problems that you have shared with us. I do have gastrointestinal issues to deal with but not osteoarthritis. Perhaps you doctor can recommend a drug to help ease this pain. Many patience with 5Q- do well with Revlimid but sometimes the side effects are difficult to deal with.

[Kenneth_In_Va]

Audrey-

I also have 5q minus syndrome (with a t(2,11) kicker as well. I have had deep muscle cramping off and on for a few years. I wasn’t diagnosed with MDS till last Fall and think they began waking me up at night when I turned 55 or so. I’m 63 now.

I have found that my cramps are proportional to the amount of water I drink during the day! If I have at least 2 full grasses of water during the day I don’t have leg cramps at light. I also try to eat at least 1 banana every morning for the potassium and take a children’s asprin (80mg) daily as well. Those 3 things have pretty much put an end to my leg cramps at night and I don’t believe they would be harmful for anyone to try. That said, check with your Docs to be sure before you try my remedy.

Hope this helps some.

Kenneth (Gene) In Virginia

[jimkufis]

Hi Gene. Jim Kufis here. I also have had leg cramps at night but these are infrequent and I found that simple leg stretch exercises cure the problem. I agree that adequate hydration will help reduce this problem and lack of potassium can cause cramps.

On another subject, I recently had my PSA and cholesterol checked and was surprised to have my total cholesterol reading drop to 94mg/dL. The last time it was measured was more than 2 years ago and the level then was 174mg/dL. I have regularly consumed flax meal for the past 5 years and this had the effect of dropping the reading from 210 down to 174mg/dL.

My PSA level was 6.5 for several years and this has dropped to 3.4. I think the Revlimid may be having an effect on this.

Have you had these measurements recently?

[Kenneth_In_Va]

Hey Jim,

I did have a routine PSA test a few months back but it must have been un-remarkable as my GP didn’t mention anything. I’ll ask him the next time I see him to compare the ###’s to see. Likewise on the cholesterol. I have been lucky on that as well for the last 5 years. I did have an elevated Triglyceride level a few years ago but that cleared up when I started limiting my soft drinks to 1 a day and began using honey instead of sugar in my coffee.

I’ll ask about the PSA and cholesterol levels next time to see if I had the same results as you on these. That would be nice to be able to report some positive side effects for Revlimid wouldn’t it? (I posted the results of this weeks CBC on another topic yesterday)

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