[Alex]

Revlimid maintenance - change in response

by Alex on Wed Feb 12, 2014 5:08 pm

Now on my third year of 15g maintenance, my usual response to daily Revlimid is fatigue and a roller coaster of diahorrea or constipation.

My last month's program has seen a change with immediate nausea, fatigue and complete lack of energy, even menial tasks are tough. Within ten minutes of taking the daily dose, I can notice the effects straight away.

I wonder is this a sign of anything, a bad batch or a change in my metabolism toward the drug.

Will discuss on my next hospital call but ... Is this common out there?

[Eric Hofacket]

Re: Revlimid maintenance - change in response

by Eric Hofacket on Wed Feb 12, 2014 5:47 pm

I have been on 10mg daily three weeks on one week off for two years. 15 mg seems to be more than what most people take for a maintenance dose. A few months ago it was raised to 15 mg after I had a positive immuofixation test and I got sick off and on for about two months because of low WBC. I also noticed I was more tired than usual. I went back down to 10mg after a few cycles at 15 mg. Thankfully I have never had any gastrointestinal complications from Revlimid, but I do feel some fatigue side effects but I am still able to do a lot. I have never noticed any immediate effects right after taking Revlimid. I only notice a changes a few days after starting or stopping Revlimid.

[JBarnes]

Re: Revlimid maintenance - change in response

by JBarnes on Wed Feb 12, 2014 11:24 pm

Are you taking the Rev at bedtime? I take mine at night to avoid some of the fatigue. Jerry

[Eric Hofacket]

Re: Revlimid maintenance - change in response

by Eric Hofacket on Thu Feb 13, 2014 12:29 am

I take my Revlimid in the morning. I have not thought about taking it at night because for me the fatigue seems to always be there, not just after I take the pill. Maybe I should try it at night. I would be interested in hearing other peoples experiences about when the best time to take Revlimid is.

[Guitarnut]

Re: Revlimid maintenance - change in response

by Guitarnut on Thu Feb 13, 2014 1:11 am

Hi Eric,

I take 10mgs, 21 on/7off. I've tried different times of day and the fatigue is always there for me. When I take it makes no difference.

[Alex]

Re: Revlimid maintenance - change in response

by Alex on Thu Feb 13, 2014 6:01 am

Thanks to those who replied and those who prompted me to do a search of the forum revealing the gastrointestinal issues that many face. I feel assured that I am not alone, cold case evidence for my next consultation.

Thanks to the entry that says everything is fine. I'll make note of that and pass it on to my bowel.

[R neb]

Re: Revlimid maintenance - change in response

by R neb on Sat Mar 01, 2014 4:40 am

Alex:

I had tremendous difficulty with constipation and fatigue during Induction ( Velcade, steroids, etc) and now on maintenance, after stem cell collection (Cytoxan, etc). Been on Revlimid maintenance since last April. I declined more steroids due to multiple issues, including constipation.

The Revlimid fatigue is there for me regardless of whether I take it a.m. or p.m.. I have found that taking it with coffee in the a.m. works best for me, energy-wise, and also for the constipation (motility)

For constipation, I have switched my diet over to lower carbs, and a very high fruit and vegetable diet. I still eat meat/protein, I just push the vegetables and fruit hard. This diet, plus an occasional agent (Dulcolax or Miralax) does the trick for me. Sometimes rather quickly!

I'm on 10 mg Revlimid daily and Zometa infusion monthly. I also take an 81 grain aspirin daily for the clotting issues.

Had a total hip replacement (THR) done about a month ago. Went off Revlimid. More energy last month, but back on Revlimid, and my hip healing has virtually stopped. Probably due to angiogenesis/effect on proteins at site of surgery. Thus, slow healing for THR. Fatigue returned.

I had lab yesterday. Will see results next week.

Good luck.