[Blackbird]

Re: Chronic diarrhea while taking Revlimid

by Blackbird on Tue Feb 27, 2018 3:29 pm

I have been taking chole­styr­amine for a couple of years now with no effect on the Revlimid that I take. The suggestion that I was given was to wait for an hour after taking the Revlimid before taking the chole­styr­amine, which is what I do. It has done won­ders for me since I also suffer from colitis. The Revlimid just aggravates it more. Taking a packet in the morn­ing and in the evening does the trick for me.

[K_Shash]

Re: Chronic diarrhea while taking Revlimid

by K_Shash on Tue Feb 27, 2018 11:37 pm

Thanks Blackbird and margiehmb

Thank you so much for sharing your (and your husband's, margiehmb) experience with chole­styr­a­mine.

I am glad the cholestyramine is working well in both your cases and that, too, with only a short separa­tion between the Revlimid and the chole­styramine! It didn't work well for me even with a 4 to 6 hour separation that my PCP and the oncology pharmacist had recommended. My kappa and kappa-lambda ratio both shot up by 20% and 25%, respectively, after a few weeks of chole­styramine. My oncologist advised me to try the 12-hour interval (making me miss a dose on the day I take the alternate day Revlimid) and those readings came right back down! I am manag­ing the diarrhea quite well and now trying the 2x 1-gram Colestipol (colestid) tablets.

I am taking a smaller dose of the Revlimid because I got the Revlimid rash on the 11th day when I tried the 3-weeks on, 1-week off dose of the 15 mg Revlimid without the dexamethasone. I had the Revlimid rash even during one of the 8-cycles of my Induction therapy even with the 20 mg weekly dex.

My theory is that even a small drop in the Revlimid absorption of a 'borderline' dose could be causing the kappa and kappa-lambda ratio to rise abruptly in my case. I was able to tolerate the 20 mg alternate-day Revlimid, as I recall. However, the larger dose did not drop my kappa or kappa-lambda ratio significantly. Even the Imodium (loperamide) caused my kappa and kappa-lambda ratio readings to shoot up by over 30%.

Assuming that that is the case, I hope I have a 'cushion' for my current Revlimid dose. I may be able to go to the alternate day 20 mg Revlimid and I believe the dex helped the Revlimid effec­tive­­ness, but my oncologist is against my using it because of its long-term effects. I am sure these would be the first things to try if and when my kappa and kappa-lambda ratio start approach­ing the "relapse" levels. My kappa and kappa-lambda ratio stayed in the 'mid-normal' levels for a couple of months when the Revlimid was accompanied by dex.

There are just too many drug interactions! My kappa is already in the 45-50 mg/L range, quite high (3.3-19.4 mg/L is the "normal" range), but the kappa-lambda ratio has been around 1.75, fairly close to the "high normal". These parameters have been in this range for over a year, barring the spikes in the readings caused by the chole­styr­amine and Imodium and I feel quite happy with those numbers and with the near-normal life I am able to lead. The Revlimid diarrhea did get intolerable for a while a year ago, though.

Hope we can compare notes in 10 years from now!

[bgmaw2014]

Re: Chronic diarrhea while taking Revlimid

by bgmaw2014 on Mon Mar 11, 2019 9:00 pm

I had been on Revlimid maintenance for almost five years until I stopped 3 months ago. During that five years, I had almost daily diarrhea. Needless to say, this made any activities away from home very difficult. I finally had enough! I asked my doctor if I could stop the Revlimid, and he reluctantly agreed. However, the diarrhea has continued almost daily. My doctor prescribed Lomotil (diphen­oxylate and atropine) a few years ago, and I have used that with some relief, but it is not taking care of the problem as it should.

Thank you so much for all your input. I was especially happy to hear about the good result some of you are having with "cholesterol" medications. I talked to my doctor about this when I went to see him last week and he agreed to try it. If this works, I can get my life back. I just took the first dose over the weekend, so I will see.

I am hopeful.
Again, thank you!

[Nancy Shamanna]

Re: Chronic diarrhea while taking Revlimid

by Nancy Shamanna on Tue Mar 12, 2019 9:07 am

Another suggestion for controlling diarrhea while taking Revlimid that I have used were two different over the counter drugs, at two differing times, when I was taking Revlimid. The first was 'Lax A Day' (polyethylene glycol), and the other 'Smooth Texture Fibre Laxative' (psyllium hydrophilic mucilloid). Although both of these drugs are laxatives, what they do is to absorb excess fluid in the gut and thus create a more normal condition. This did help quite a bit. The dosages suggested on the packaging are approximations and you may need less than the maximum suggested dosage.

The last time I stopped taking Revlimid, about 6 weeks ago, it still took about 3-4 weeks to feel normal again. (I have been on and off Revlimid three times over the years.) I hope that helps anyone else who has been struggling with this problem.

[Mike F]

Re: Chronic diarrhea while taking Revlimid

by Mike F on Tue Mar 12, 2019 11:36 am

It's really interesting that the fiber supplements actually helped the situation, Nancy. It's a bit counter-intuitive but I can see how it would work.

[Nancy Shamanna]

Re: Chronic diarrhea while taking Revlimid

by Nancy Shamanna on Tue Mar 12, 2019 12:39 pm

Thanks Mike.

The supplements were recommended by my doctors and nurses, so that is why I used them. Of course, any­one trying something related to cancer should clear it with their medical team!

[AvanTromp]

Re: Chronic diarrhea while taking Revlimid

by AvanTromp on Tue Mar 12, 2019 1:01 pm

I took Revlimid for about 7 years (7.5 mg) as maintenance until I stopped responding to it. During all of that time, I suffered from diarrhoea, but this was relieved considerably by taking Questran (cholestyramine) daily. It is my understanding that this treatment is now recommended by myeloma consultants here (in the Netherlands). I hope this helps.

Anet.

[Bar-none]

Re: Chronic diarrhea while taking Revlimid

by Bar-none on Sun Apr 28, 2019 5:26 pm

During my five years of Revlimid maintenance, chronic diarrhea was a big issue. Seems I was always trying to get a balance between Revlimid diarrhea and constipation caused by the opioids. I finally settled on a cap or two of Miralax (polyethylene glycol 3350)a day to keep things moving and would usually plan my day around a morning bowel movement but sometimes I wasn’t able to. The worst case was when there was a buildup of several days that had to be cleared out. This would keep me closer to home for obvious reasons.

Best! BN

[Ron Harvot]

Re: Chronic diarrhea while taking Revlimid

by Ron Harvot on Thu May 30, 2019 3:56 pm

Here is a link to a related thread that you may find of interest. It discusses the use of Welchol (colesevelam).

"Welchol (colesevelam) for Revlimid related diarrhea"

Welchol is primarily used to treat high LDL cholesterol, but as a secondary use for treating bile acid malabsorption (BAM). The British study cited in the forum, published in Blood in 2014, found that patients taking Revlimid (lenalidomide) which induced diarrhea, was very often linked to BAM which responded very well to the use of Welchol (related Beacon news article).

[Nanjeanne]

Re: Chronic diarrhea while taking Revlimid

by Nanjeanne on Thu May 30, 2019 4:15 pm

My husband had no issues with Revlimid, but when he started on Pomalyst, he had severe diarrhea and we were concerned about his ability to stay on the drug. Our myeloma specialist recommended he try colestipol (Colestid), and it immediately worked. He takes the lowest dosage once a day, but it was a juggling act because he also takes a blood thinner and metoprolol and wanted to be sure the colestipol didn’t interfere with the absorption of the other medications. Once he got into the rhythm, it’s been fine.