My primary audience for these columns is the myeloma pa­tients and their care­givers who frequent The Myeloma Beacon. But, as I am sure is the case with my fel­low col­um­nists, I share my column with friends and rela­tives by email and by post­ing links on social media. For that reason, I try to make the subjects – although always myeloma-related – somewhat uni­versal.

At the risk of alienating my non-myeloma audience, this month I write about a very specific myeloma-related issue: diarrhea.

And not just any diarrhea, but diarrhea brought about by the myeloma drug Revlimid ^[1] (lenalidomide).

My initial three-drug induction regimen was the VRD protocol, with the “R” standing for Revlimid. I was on this treatment for about six months. There were some side effects, but diarrhea was not an issue.

About two months after my stem cell transplant at the end of January 2014, I began Revlimid main­te­nance. At first, there were no noticeable side effects. But as time went on, I began to have occasional diarrhea epi­sodes (henceforth referred to simply as “episodes”). They were rare at first – maybe once every couple of weeks – and I would just pop a couple of Imodium (loperamide) pills and that would take care of it.

But slowly the problem began to escalate.

I started to have the episodes more frequently. They began to occur once a week. Still, the Imodium seemed to take care of it, so I didn’t seek any further treatment.

After about two months of the once-a-week routine, the episodes came more often. Twice a week was the norm for a while.

Then it became more persistent – every couple of days. And sometimes I needed more than one dose of Imodium to keep it bay.

Worse yet, this was seriously affecting my quality of life. I dreaded going out to a restaurant or someone’s house for a meal since an episode might come on quickly before I could make it home. I took to carrying Imodium with me whenever I went out.

It even began to interfere with my bike rides; twice I had to seek out an emergency bathroom during a ride. I was lucky enough to find one in time on both occasions. It could have been a serious mess!

I knew that it was time to do something about this problem, but I was reluctant to reduce my Revlimid dose below 10 mg per day since my feeling is that this is the lowest efficacious maintenance dose.

I remembered reading an article at The Beacon ^[2] reporting on a small British study that examined the use of a drug called Welchol (colesevelam, Cholestagel) to treat Revlimid-induced diarrhea. So I dug the article up and read it.

Welchol is a bile acid sequestrant. According to the study as reported in The Beacon, Welchol can be effective in preventing or ameliorating diarrhea caused by Revlimid since that side effect is often caused by bile acid malabsorption. The study also reported that some patients got relief by simply reducing the fat in their diet, but I did not think that was a viable approach for me since my diet does not include a lot of fat.

The Beacon article also pointed out that doctors at the Dana-Farber Cancer Institute in Boston had since 2009 been prescribing a drug call Colestid (colestipol) for Revlimid-related diarrhea. Colestid, like Welchol, is a bile acid sequestrant. The doctors at Dana-Farber prescribe 2 grams of Colestid up to three times a day for their patients.

Some of the comments from Beacon readers posted in response to the article gave me some encouragement that Colestid might work for me.

I did some further research on the drug and found that it provided relief to people suffering from irritable bowel syndrome and other similar conditions. This seemed like a promising approach.

At my next appointment with my myeloma specialist, I asked him if he had ever prescribed these drugs, used primarily to treat high cholesterol, to combat diarrhea caused by Revlimid. He said that he had used Questran (cholestyramine) but had not heard of Colestid. I showed him the Beacon article and highlighted the portion of the article that mentioned the success the Dana-Farber doctors reported.

He supported my request to try Colestid, observing that if it worked for me, he would now have another approach to try with his other patients.

I was hopeful that this drug would work for me, but I was aware that none of the bile acid sequestrants were effective for everyone suffering from diarrhea caused by Revlimid.

I decided to start with the maximum dosage used by the Dana-Farber doctors with the idea that, if it proved effective, I could slowly reduce the dosage.

But this approach was challenging for a reason that I did not appreciate at first.

Because drugs like Colestid and Welchol bind to substances in the stomach other than bile acid, they can interfere with other drugs that the patient may be taking. The guidance is that other drugs should be taken at least one hour before, or four hours after, the bile acid sequestrant. Trying to fit three doses of this stuff into my carefully constructed medication schedule was quite a challenge. On more than one occasion, I fell asleep before the required four hours had expired and had to wake up during the night to take my last dose of the day.

But these challenges were worth it.

I had three episodes in the four days before I starting taking the Colestid. Since then, I have had none!

After two weeks, I reduced the dosage to two grams twice a day. About two and a half weeks after that, I reduced the dosage again to two grams once a day. And still no episodes.

In the interest of full disclosure, I will say that I have had a couple occasions where I thought an episode was imminent, and the result was not entirely normal, but it was not what I would consider diarrhea. I have not had to take a single Imodium since I began the Colestid.

There are several lessons here. Don’t suffer needlessly with medication side effects. The Beacon is a great resource for seeking information to deal with side effects. And don’t be reluctant to help educate your doctor about options for dealing with side effects. No doctor can be aware of every possible option.

The best part of this story is that my quality of life is greatly improved. If you suffer from this troublesome side effect, I highly recommend that you give one of these drugs a try.