[K_Shash]

Re: Chronic diarrhea while taking Revlimid

by K_Shash on Fri May 31, 2019 11:04 pm

Hi Nanjeanne,

I think Colestipol (colestid) works on the bile acids in the stomach like the cholestyramine that I have been taking for over 2 years and have had a very good response, so far. Both trap these bile acids and prevent their reabsorption. I don't think I had much of a diarrhea-related problem during the induction treatment. Maybe the dex helped keep some of the side effects of Revlimid in check. At the time, I was on 15 mg Revlimid, daily for 3 weeks and off for a week. I could not tolerate that much Revlimid as soon as the dex was stopped as part of my Revlimid-only maintenance, as evidenced by the Revlimid rash. I have been on the alternate day 15 mg Revlimid.

And yes, it is a juggling act, because the cholestyramin absorbs everything, including the Revlimid. I have had to separate the two by about 12 hours as I reported in my post almost 2 years ago. Now I am making sure that the slow release aspirin and other medications are not affected by my daily cholestyramine (twice a day and once on the day of my alternate-day Revlimid). I try to keep at least a 4 hour interval between my cholestyramine and other drugs.

It certainly has kept my cholesterol under control without the Lipitor I was taking for almost 20 years. And I still get Revlimid diarrhea on the morning after my Revlimid and until my next morning's cholestyramine has a chance to act. Also, the Revlimid must be a slow release medication because I get the same diarrhea 36 hours after my Revlimid if I forget to take my cholestyramine on the night before. In my case, none of the standard drugs for diarrhea worked, and I was very close to having to stop Revlimid altogether, same as your husband's severe diarrhea with Pomalyst.

My kappa has risen and is now close to 100 mg/L, and the kappa-lambda ratio (above 3 now) have been rising lately and my hemoglobin has dropped well below 11. All this may be caused by the 4+ years of Revlimid for the Induction followed by the maintenance, and I may have to try Pomalyst soon. And if I experience the Pomalyst diarrhea and if the cholestyramine doesn't work, I will certainly try colestid.

Thanks for sharing this information.

[Nanjeanne]

Re: Chronic diarrhea while taking Revlimid

by Nanjeanne on Sat Jun 01, 2019 9:16 am

K_Shash

After 5 years of remission (never complete, even after stem cell transplant), my husband had a big relapse. His numbers had been rising, but nothing shocking. Then after a wonderful trip to Italy he noticed that he had an ache when walking and his numbers took a bigger drop. We visited his myeloma specialist, who suggested we start Darzalex, which we were going to discuss with his local oncologist when we got back. But two days later, he was in severe pain, and after a trip to the emergency room, then MRIs and xrays, we found that he had lots of lesions, compression fracture, and his bone marrow was almost completely infiltrated. That was November, and it happened that fast! His bone scan a little over a year before was just fine.

He started radiation on his hip and also Darzalex and Pomalyst and had an immediate response. He is on 2 mg Pomalyst because the Revlimid had really dropped his WBCs. The diarrhea was a real concern because the treatment was working so well. We were so happy the colestipol worked. After rehab, his walking has improved significantly, he no longer takes pain medications, and his M-spike, for the first time in this journey, has been undetectable. And best of all, we were back in Rome in April, and he walked and ate and drank with gusto!

Good luck!