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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Re: Welchol (colesevelam) for Revlimid related diarrhea

by Cheryl G on Sat Dec 20, 2014 2:02 pm

Hi Mike,

I'm really sorry to hear that not only didn't the Welchol help you, but it seems to have made things worse for a while. I guess that whatever was causing your GI upset was due to something that can't be addressed by Welchol or other drugs like it.

I do appreciate your posting the update and I hope you find something that helps with the GI issues you've been experiencing.

Cheryl G

Re: Welchol (colesevelam) for Revlimid related diarrhea

by Guitarnut on Sat Dec 20, 2014 9:35 pm

So sorry to hear that Mike. I was hoping you would find the relief i have with it. I take 3 tabs, twice daily. It's odd because, without it, I have the horrible gas along with the diarrhea. Both have completely cleared up with the use of Welchol.

I hope you and your doctor are able to find something else that will work for you. You have my sympathies!!

Scott

Guitarnut
Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47

Re: Welchol (colesevelam) for Revlimid related diarrhea

by mikeb on Mon Dec 22, 2014 1:33 pm

Hi Cheryl and Scott,

Thanks for the kind words and good wishes. I'm doing pretty well at this point. Still a little diarrhea, but it's not bad. I'm feeling like my old self again!

I think it was just a failed experiment with the Welchol for me. I'm glad it's helped you, Scott. This is just another example of how differently different people can respond to the same drug.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Welchol (colesevelam) for Revlimid related diarrhea

by mfrettig on Tue Dec 23, 2014 7:21 pm

For what it's worth, I've started taking a probiotic daily, and the occurrence of severe Revlimid abdominal side effects has significantly reduced.

mfrettig
Name: Michael
Who do you know with myeloma?: Self
When were you/they diagnosed?: September 2010
Age at diagnosis: 48

Re: Welchol (colesevelam) for Revlimid related diarrhea

by Rose on Wed Dec 24, 2014 9:20 am

I recently started to take Welchol, 3 pills twice a day. It was magical. The diarrhea and terrible gas disappeared. What a wonderful feeling. However, constipation took their place. I will speak to my doctor and see if I can lower the dosage. Hopefully, that will work because I never want to go back to the diarrhea.

Rose

Re: Welchol (colesevelam) for Revlimid related diarrhea

by Guitarnut on Thu Dec 25, 2014 9:08 pm

Hi mfrettig - I tried that as well, along with loperimide and something else, but got very little relief. Odd how things work with different folks. Glad you found relief with that!

Hi Rose - Constipation seems to be a common side effect but one I haven't experienced. I am now dealing with heartburn, which is yet another common side effect. Hope that works out for you!!

Guitarnut
Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47

Re: Welchol (colesevelam) for Revlimid related diarrhea

by cindylouise on Fri Dec 26, 2014 8:15 am

Mike,

After reading how the Welchol did not work for you, I also was going to ask if you had tried a probiotic?

In dealing with patients who do have C. diff, often adding the probiotics is more healing than the antibiotics that treat it. While I understand you don't have C. diff, I was wondering if the probiotics would "right" things in your intestinal tract?

cindylouise

Re: Welchol (colesevelam) for Revlimid related diarrhea

by mikeb on Sat Dec 27, 2014 12:32 pm

Hi cindylouise,

Good question about the probiotic. I've been taking a probiotic for years at the recommendation of my allergist. I don't completely understand the process he has in mind, but he thinks that having those active organisms in my gut also reduces my allergic responses to things like dust, pollens, etc. So I started taking probiotics years before being diagnosed with MGUS or multiple myeloma.

Now for another update - I'm doing great! No diarrhea. No constipation. Just regular bowel movements over the past few days. I'm not sure what I've done to cause this, but I'm happy about it. I think this is the first time I haven't had at least a little diarrhea due to the Revlimid in months.

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: Welchol (colesevelam) for Revlimid related diarrhea

by Rose on Sun Jan 18, 2015 1:56 pm

Hi Guitarnut

Since I posted my reply regarding Welchol, I have reduced the dosage to 2 pills daily - one in the morning, and one in the evening. It's working out fine.

I wonder if I should take any probiotics in addition. Any thoughts on that?

Rose

Rose

Re: Welchol (colesevelam) for Revlimid related diarrhea

by Guitarnut on Mon Jan 19, 2015 10:51 pm

Hi Rose,

That is great! You've inspired me to give that a try myself.

I didn't have any positive results with probiotics as far as relief is concerned. However, they might help in boosting your immune system. That is something I would discuss with your doctor. I did have a recent conversation with a pharmacist about probiotics for my wife, and she told me that "Culturelle" was the strongest as far as ingredients are concerned. Something to check into for sure!

Guitarnut

Guitarnut
Name: Scott Hansgen
Who do you know with myeloma?: Me
When were you/they diagnosed?: Sept 2011
Age at diagnosis: 47

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