During my monthly visit yesterday, my myeloma specialist prescribed Welchol (colesevelam) to help reduce diarrhea issues I've been having as a side effect of Revilimid (lenalidomide) maintenance. Welchol is usually prescribed as a cholesterol-lowering medication. Off-label use to control diarrhea seems to be a fairly new thing. Can anyone shed any light on what I can expect while taking it? Will it be effective? Does it have any noteworthy side effects?
Thanks,
Mike
Forums
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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
Good question, Mike. Thanks for posting it.
Just so that everyone knows, there was a recent Beacon news article with information about using Welchol and other drugs like it for diarrhea associated with Revlimid treatment. Here's the reference:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 14, 2014.
Just so that everyone knows, there was a recent Beacon news article with information about using Welchol and other drugs like it for diarrhea associated with Revlimid treatment. Here's the reference:
"British Researchers Document Potential Solution For Revlimid Gastrointestinal Side Effect," The Myeloma Beacon, Oct 14, 2014.
Re: Welchol (colesevelam) for Revlimid related diarrhea
We commonly give this to nursing home patients with chronic diarrhea. If you follow the link, it is important to note the part about the timing of when you take it. It can affect how well you absorb your medications if taken too close together. They mention four hours before or after taking your meds.
We generally go with an hour before other meds, or four hours after, as recommended by our pharmacy staff. Some of our patients use it once a day, some need it twice a day. But if taken routinely, it generally works well.
As with anything used to control your bowels, you have to watch out for constipation.
We generally go with an hour before other meds, or four hours after, as recommended by our pharmacy staff. Some of our patients use it once a day, some need it twice a day. But if taken routinely, it generally works well.
As with anything used to control your bowels, you have to watch out for constipation.
Re: Welchol (colesevelam) for Revlimid related diarrhea
Beacon Staff,
Thanks for the reminder about the article. When I read that back in October, I thought I should ask my myeloma specialist about Welchol the next time I see him. But I didn't immediately add that to my on-going list of questions that I keep in my iPhone, and then forgot about it. When he mentioned it Wednesday, I didn't think about the connection with the article.
Cindylouise,
Thanks for the information you provided. My medical team said the same thing about being careful about when I take it, being sure to space it out correctly. Welchol has been shown to interact with levothyroxine, which is something I also take. Since I take that in the morning and Revlimid in the evening, that means lunchtime for Welchol.
Thanks for the reminder about the article. When I read that back in October, I thought I should ask my myeloma specialist about Welchol the next time I see him. But I didn't immediately add that to my on-going list of questions that I keep in my iPhone, and then forgot about it. When he mentioned it Wednesday, I didn't think about the connection with the article.
Cindylouise,
Thanks for the information you provided. My medical team said the same thing about being careful about when I take it, being sure to space it out correctly. Welchol has been shown to interact with levothyroxine, which is something I also take. Since I take that in the morning and Revlimid in the evening, that means lunchtime for Welchol.
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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
Hey Mike,
I started off with Velcade and 5 mg dex, twice a week for two weeks and then 10 days. It worked very well for me. Most markers came to normal range with a few low, but not quite remission stage. I did everything I always did for about a year and a half and started getting resistant to Velcade.
The oncologist talked me into going on Revlimid, which I did not think was a good idea based on my research of it and my risk factors (bad vein valves in the lower left leg; I take baby aspirin about twice a week and wear compression stockings, which worked well for over 10 years and no problems).
Well, as soon as I started Revlimid at high dosage, things started happening: diarrhea, calves sore as hell and ankles swelling. I complained and my doctor the lowered dose, which was no help. I went to the ER once with ankle and calf. The doctor looked at it, moved it around and said "no clots." My gut feeling was not with his diagnosis, but I wanted to believe it and went home.
Affter about 5 months of this junk and my numbers were not improving a lot, I had a dopler done and had two blood clots in the left leg, one dvt and the other a surface one on the calf. The doctor put me on Xarelto and sent me home. I was short of breath the next few days and had a cat scan done and had clots in my lungs also.
I would not recommend Revlimid for anyone. It is junk and causes too many dangerous side effects. I am clear now of clots and taking Velcade once more since the FDA approved it for a second time after being off for 6 months, perfect timing. My numbers are coming down again fast, but the side effects and risks caused by Revlimid were terrible and I would never ever take it again.
Panobinostat is one drug I would like to try and then the T-cell therapy by Novartis. This is the answer for a cure. All of this stuff we are now taking, even though greatly improved, is not the answer since we become immune to all of them, they are a patch, but the T-cell is a cure if they can perfect it. So far, amazing results with it.
The FDA will take a look at panobinostat in February after giving Novartis an extension of 3 months to clean up the safety issues that caused the oncologist panel of 7 to vote it down 5-2 last month. It is a new therapy for myeloma and with Velcade works well from everything I have followed on it.
My personal suggestion based on my experience with Revlimid is get off it asap before it gets worse.
Geo Oliver
Benicia, C.
I started off with Velcade and 5 mg dex, twice a week for two weeks and then 10 days. It worked very well for me. Most markers came to normal range with a few low, but not quite remission stage. I did everything I always did for about a year and a half and started getting resistant to Velcade.
The oncologist talked me into going on Revlimid, which I did not think was a good idea based on my research of it and my risk factors (bad vein valves in the lower left leg; I take baby aspirin about twice a week and wear compression stockings, which worked well for over 10 years and no problems).
Well, as soon as I started Revlimid at high dosage, things started happening: diarrhea, calves sore as hell and ankles swelling. I complained and my doctor the lowered dose, which was no help. I went to the ER once with ankle and calf. The doctor looked at it, moved it around and said "no clots." My gut feeling was not with his diagnosis, but I wanted to believe it and went home.
Affter about 5 months of this junk and my numbers were not improving a lot, I had a dopler done and had two blood clots in the left leg, one dvt and the other a surface one on the calf. The doctor put me on Xarelto and sent me home. I was short of breath the next few days and had a cat scan done and had clots in my lungs also.
I would not recommend Revlimid for anyone. It is junk and causes too many dangerous side effects. I am clear now of clots and taking Velcade once more since the FDA approved it for a second time after being off for 6 months, perfect timing. My numbers are coming down again fast, but the side effects and risks caused by Revlimid were terrible and I would never ever take it again.
Panobinostat is one drug I would like to try and then the T-cell therapy by Novartis. This is the answer for a cure. All of this stuff we are now taking, even though greatly improved, is not the answer since we become immune to all of them, they are a patch, but the T-cell is a cure if they can perfect it. So far, amazing results with it.
The FDA will take a look at panobinostat in February after giving Novartis an extension of 3 months to clean up the safety issues that caused the oncologist panel of 7 to vote it down 5-2 last month. It is a new therapy for myeloma and with Velcade works well from everything I have followed on it.
My personal suggestion based on my experience with Revlimid is get off it asap before it gets worse.
Geo Oliver
Benicia, C.
Re: Welchol (colesevelam) for Revlimid related diarrhea
Hi Mike,
I started taking Welchol a month or so back. It has worked wonders for me. Diarrhea was the biggest issue I have had with Revlimid, other than some cramping in my feet and a bit of fatigue. I take Welchol twice a day. I've also noticed that, if I miss even one dose, my condition reminds me like clockwork.
Good luck with it. I hope it works well for you!
I started taking Welchol a month or so back. It has worked wonders for me. Diarrhea was the biggest issue I have had with Revlimid, other than some cramping in my feet and a bit of fatigue. I take Welchol twice a day. I've also noticed that, if I miss even one dose, my condition reminds me like clockwork.
Good luck with it. I hope it works well for you!
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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
Hi WhyMeLord,
I'm sorry to hear about the problems you've had with Revlimid. Blood clots are certainly a potential side effect of Revlimid. It is unfortunate that it took so long for your medical team(s) to detect that you had blood clots. I am glad you are feeling better now, and glad that you are responding well to Velcade again.
And I agree with you that new therapies like panobinostat and the t-cell therapies are promising. If you haven't read it already, you might be interested in The Beacon's preview yesterday of the ASH 2014 conference, which started today. The preview discusses a number of new therapies that will be reported on at ASH (https://myelomabeacon.org/news/2014/12/05/ash-2014-multiple-myeloma-new-treatments-preview/)
Fortunately, my experience with Revlimid has been much more positive than yours. I took it during induction and consolidation therapies (along with Velcade and Dex) in spring and late summer of 2013. And I've been on a 10 or 15 mg dose of it in maintenance therapy continuously since late Sept 2013. I went from VGPR when I started maintenance to sCR in July, so my version of myeloma has been quite responsive to Revlimid. And I've tolerated it reasonably well. I have had some muscle cramping problems, lowered WBC and platelet counts, and now diarrhea. But all in all, not too bad. It's amazing how individualized our responses (both good and bad) are to these drugs.
Best of luck to you as you move forward with your treatment.
I'm sorry to hear about the problems you've had with Revlimid. Blood clots are certainly a potential side effect of Revlimid. It is unfortunate that it took so long for your medical team(s) to detect that you had blood clots. I am glad you are feeling better now, and glad that you are responding well to Velcade again.
And I agree with you that new therapies like panobinostat and the t-cell therapies are promising. If you haven't read it already, you might be interested in The Beacon's preview yesterday of the ASH 2014 conference, which started today. The preview discusses a number of new therapies that will be reported on at ASH (https://myelomabeacon.org/news/2014/12/05/ash-2014-multiple-myeloma-new-treatments-preview/)
Fortunately, my experience with Revlimid has been much more positive than yours. I took it during induction and consolidation therapies (along with Velcade and Dex) in spring and late summer of 2013. And I've been on a 10 or 15 mg dose of it in maintenance therapy continuously since late Sept 2013. I went from VGPR when I started maintenance to sCR in July, so my version of myeloma has been quite responsive to Revlimid. And I've tolerated it reasonably well. I have had some muscle cramping problems, lowered WBC and platelet counts, and now diarrhea. But all in all, not too bad. It's amazing how individualized our responses (both good and bad) are to these drugs.
Best of luck to you as you move forward with your treatment.
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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
Hi Guitarnut,
Thanks for your reply. I'm glad that Welchol has worked well for you. I started with just one pill at lunchtime, but this morning admitted to myself that I need to bump that up to 2 pills. We'll see how that goes.
Good luck to you too!
Thanks for your reply. I'm glad that Welchol has worked well for you. I started with just one pill at lunchtime, but this morning admitted to myself that I need to bump that up to 2 pills. We'll see how that goes.
Good luck to you too!
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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
Revlimid caused me to experience nasty diarrhea. It turns out Revlimid irritates the lining of the intestines. That irritation of the lining makes it difficult for the body to process lactose.
I became lactose intolerant even though it was never an issue prior. I cut out dairy for a week, while on Revlimid, and all was well. Now I limit dairy and when I do consume it, I take over the counter lactaid pills and the problem is solved!
I became lactose intolerant even though it was never an issue prior. I cut out dairy for a week, while on Revlimid, and all was well. Now I limit dairy and when I do consume it, I take over the counter lactaid pills and the problem is solved!
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Joannet
Re: Welchol (colesevelam) for Revlimid related diarrhea
Hi,
Here's an update on my experience with Welchol. Let's just say Welchol did not go well for me.
After taking it (2 pills with lunch) for 8 days, it had done little to reduce the Revlimid diarrhea I was experiencing. And we think it was the cause of a tremendous amount of gas in my system. Easily enough gas to fill up the Hindenburg. And stomach cramps and general queasiness and lethargy. I stopped taking Welchol a week ago, and finally am feeling back to "normal" over the past couple of days.
Disclaimer - It is possible that I had some GI infection and that might have caused the problems I experienced instead of the Welchol. I was tested for C. diff, which was negative. My medical team thinks the problem was Welchol, not an infection, but we can't be sure with the data we have now. One way to increase our certainty would be to try Welchol again, but I don't think I want to do that.
Mike
Here's an update on my experience with Welchol. Let's just say Welchol did not go well for me.
After taking it (2 pills with lunch) for 8 days, it had done little to reduce the Revlimid diarrhea I was experiencing. And we think it was the cause of a tremendous amount of gas in my system. Easily enough gas to fill up the Hindenburg. And stomach cramps and general queasiness and lethargy. I stopped taking Welchol a week ago, and finally am feeling back to "normal" over the past couple of days.
Disclaimer - It is possible that I had some GI infection and that might have caused the problems I experienced instead of the Welchol. I was tested for C. diff, which was negative. My medical team thinks the problem was Welchol, not an infection, but we can't be sure with the data we have now. One way to increase our certainty would be to try Welchol again, but I don't think I want to do that.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
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