I asked my doctor about Welchol since I was having terrible diarrhea for 3 months. I had tried several over the counter medications plus a prescription drug and lastly, in desperation, an opium solution. Nothing worked. The doctor conferred with some of her partners in crime and came back with the suggestion I try Cholestyramine. It is a powder you mix with water and gag it down.
After 3 days, it worked like a cork. I have had no trouble since then. I stopped taking it since I am on a break from my chemo treatments but will probably resume when I begin low dose Revlimid in another week or so.
To be fair, there may have been other factors involved in my improvement. I had stopped all chemo treatments over a month earlier but the diarrhea continued. I had also been taking a probiotic for about a month and continue to do so. These two things may have had an effect as well as the Cholestyramine. I was too desperate to experiment with one thing at a time. Having lost over 30 lbs, I was desperate.
I do wonder if the Revlimid is the culprit or was it the dex or Velcade? Could I have picked up a bug due to my compromised immune system or was it a direct effect of the medicine?
Any input or ideas would be appreciated
Charlie
Forums
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Welchol (colesevelam) for Revlimid related diarrhea
Has anyone tried Colestid (colestipol) for this problem? If so, what was your dosage?
Also, does anyone know the dosage used in the British Welchol study?
Also, does anyone know the dosage used in the British Welchol study?
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Welchol (colesevelam) for Revlimid related diarrhea
Hello Andrew,
I checked the British Welchol study, and the dosage was the following:
"Patients received up to 6 x 625 mg of Welchol (colesevelam) in split doses with food, more than 4 hours before / after Revlimid (lenalidomide) and other dose-critical medications."
Hope this helps,
Maike
I checked the British Welchol study, and the dosage was the following:
"Patients received up to 6 x 625 mg of Welchol (colesevelam) in split doses with food, more than 4 hours before / after Revlimid (lenalidomide) and other dose-critical medications."
Hope this helps,
Maike
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Maike Haehle - Name: Maike Haehle
Associate Publisher
The Myeloma Beacon
Re: Welchol (colesevelam) for Revlimid related diarrhea
Thanks for the info on the study but I am not sure that I understand it. Any indication how the doses were split and whether a lesser amount was effective?
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goldmine848 - Name: Andrew
- When were you/they diagnosed?: June 2013
- Age at diagnosis: 60
Re: Welchol (colesevelam) for Revlimid related diarrhea
No, no additional information was provided beyond what I mentioned above, but we will follow up with the study authors to find out. We'll keep you posted.
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Maike Haehle - Name: Maike Haehle
Associate Publisher
The Myeloma Beacon
Re: Welchol (colesevelam) for Revlimid related diarrhea
My Experience with the cholestyramine:
I started experiencing severe diarrhea in early April, approximately after 2 1/2 years of Velcade, Revlimid, and dexamethasone (VRD) induction and Revlimid maintenance. I have been taking omeprazole (Prilosec) for the acid reflux and ranitidine (Zantac), as needed, for the reaction to any spicy foods. I had been managing well for many years. This diarrhea was severe and it in turn caused internal and rectal bleeding and lower body pain.
I did a search on this forum on Revlimid diarrhea and came across this discussion about cholestyramine. I had to send a copy of the article about the British study to my primary care physician before he was convinced that the Revlimid was the likely cause of my severe diarrhea, I started taking the cholestyramine in mid-July. I had a great success with the cholestyramine in controlling my diarrhea. I started with the recommended dose (4 grams) but I had to drop it to half the recommended amount (twice a day) and found it to be quite effective without causing a severe constipation and bloating.
I had checked with my PCP and with the oncology pharmacy and I was told that a 4-6 hour interval (before and after the cholestyramine) was adequate to prevent any malabsorption of Revlimid. Therefore, I was keeping about a 6 hour interval between the Revlimid and the cholestyramine during August.
However, my kappa free light chain level shot up from the July level of 46 to 55+, and the kappa-lambda ratio rose from 1.7 to 2.25 in late August. These spikes were abrupt because my kappa and kappa-lambda ratio were stable for 17 x 4-week cycles up to that point (kappa 42 +/- 10%, and kappa-lambda ratio about 1.7). My oncologist advised me in early September to increase the intervals between the Revlimid and cholestyramine to 12 hours; before AND after. I started taking half the recommended dose every 12 hours on the alternate non-Revlimid days and only a single (half) dose in the morning of the Revlimid days. This works for me because I am on an alternate day 15 mg Revlimid maintenance. I think the Revlimid and cholestyramine dosing can be managed for those that take a daily Revlimid by taking only one dose of the cholestyramine per day and separating it by 12 hours from the Revlimid.
The extended intervals between Revlimid and cholestyramine seem to have made all the difference. I kept these longer intervals between the Revlimid and the cholestyramine from early September and my latest results show that my kappa level and kappa-lambda ratio have come back down to the late July levels (kappa from 55.4 in late August to the latest 46.06). The kappa-lambda ratio actually dropped from 2.25 to 1.57!
I tried taking Imodium (loperamide) only after the recent blood test. However, Imodium seems to be difficult to use as a preventive medicine for the chronic diarrhea.
For now, I am just happy that I don't have a "relapse". My blood test results are back in the 42 +/- 10% range for kappa and in the "normal" range for the ratio. These parameters have been stable for almost 18 months, except for the spike last month, which I can attribute to cholestyramine caused malabsorption of Revlimid. I am taking my 81 mg 'slow release' aspirin about 2 hours before the Revlimid. I hope that is adequate. We need that aspirin, too. I will start taking one with the Revlimid, just to be safe.
Unfortunately, this also shows that I really need Revlimid to 'manage' my myeloma and I cannot take any "Revlimid holiday".
Cholestyramine Dosing:
We all have very different responses and reactions to these various drugs. My alternate day Revlimid dosing is not that common, either. However, I wanted to report that cholestyramine was disrupting the absorption of Revlimid, in my case, unless and until the two medications were separated by 12 hours. An 8-hour or 10-hour separation between these drugs may work, too. I don't think there is any specific research study on this subject.
I just realized that the British study was apparently based on 6 daily doses of Welchol / cholestyramine (625 grams each). My prescription is for 4 grams of the orange flavored powder with sugar, twice daily. The powder contains only 44.4% cholestyramine resin.
Also, I think my prescription may be based on the recommendation for lowering cholesterol.
I started experiencing severe diarrhea in early April, approximately after 2 1/2 years of Velcade, Revlimid, and dexamethasone (VRD) induction and Revlimid maintenance. I have been taking omeprazole (Prilosec) for the acid reflux and ranitidine (Zantac), as needed, for the reaction to any spicy foods. I had been managing well for many years. This diarrhea was severe and it in turn caused internal and rectal bleeding and lower body pain.
I did a search on this forum on Revlimid diarrhea and came across this discussion about cholestyramine. I had to send a copy of the article about the British study to my primary care physician before he was convinced that the Revlimid was the likely cause of my severe diarrhea, I started taking the cholestyramine in mid-July. I had a great success with the cholestyramine in controlling my diarrhea. I started with the recommended dose (4 grams) but I had to drop it to half the recommended amount (twice a day) and found it to be quite effective without causing a severe constipation and bloating.
I had checked with my PCP and with the oncology pharmacy and I was told that a 4-6 hour interval (before and after the cholestyramine) was adequate to prevent any malabsorption of Revlimid. Therefore, I was keeping about a 6 hour interval between the Revlimid and the cholestyramine during August.
However, my kappa free light chain level shot up from the July level of 46 to 55+, and the kappa-lambda ratio rose from 1.7 to 2.25 in late August. These spikes were abrupt because my kappa and kappa-lambda ratio were stable for 17 x 4-week cycles up to that point (kappa 42 +/- 10%, and kappa-lambda ratio about 1.7). My oncologist advised me in early September to increase the intervals between the Revlimid and cholestyramine to 12 hours; before AND after. I started taking half the recommended dose every 12 hours on the alternate non-Revlimid days and only a single (half) dose in the morning of the Revlimid days. This works for me because I am on an alternate day 15 mg Revlimid maintenance. I think the Revlimid and cholestyramine dosing can be managed for those that take a daily Revlimid by taking only one dose of the cholestyramine per day and separating it by 12 hours from the Revlimid.
The extended intervals between Revlimid and cholestyramine seem to have made all the difference. I kept these longer intervals between the Revlimid and the cholestyramine from early September and my latest results show that my kappa level and kappa-lambda ratio have come back down to the late July levels (kappa from 55.4 in late August to the latest 46.06). The kappa-lambda ratio actually dropped from 2.25 to 1.57!
I tried taking Imodium (loperamide) only after the recent blood test. However, Imodium seems to be difficult to use as a preventive medicine for the chronic diarrhea.
For now, I am just happy that I don't have a "relapse". My blood test results are back in the 42 +/- 10% range for kappa and in the "normal" range for the ratio. These parameters have been stable for almost 18 months, except for the spike last month, which I can attribute to cholestyramine caused malabsorption of Revlimid. I am taking my 81 mg 'slow release' aspirin about 2 hours before the Revlimid. I hope that is adequate. We need that aspirin, too. I will start taking one with the Revlimid, just to be safe.
Unfortunately, this also shows that I really need Revlimid to 'manage' my myeloma and I cannot take any "Revlimid holiday".
Cholestyramine Dosing:
We all have very different responses and reactions to these various drugs. My alternate day Revlimid dosing is not that common, either. However, I wanted to report that cholestyramine was disrupting the absorption of Revlimid, in my case, unless and until the two medications were separated by 12 hours. An 8-hour or 10-hour separation between these drugs may work, too. I don't think there is any specific research study on this subject.
I just realized that the British study was apparently based on 6 daily doses of Welchol / cholestyramine (625 grams each). My prescription is for 4 grams of the orange flavored powder with sugar, twice daily. The powder contains only 44.4% cholestyramine resin.
Also, I think my prescription may be based on the recommendation for lowering cholesterol.
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Welchol (colesevelam) for Revlimid related diarrhea
My experience with Revlimid was similar, although its onset was very early in my treatment.
Some thoughts on Revlimid and its side effects: Since this medication irritates the entire digestive tract, starting with the mouth and ending you know where, I wonder, did you experience any mouth sores or irritation?
The gastric distress might be from the Revlimid itself, or perhaps the Revlimid irritates the lining of your gut to the extent you are easy prey for any transient bug that get inside there. A simple lab test should be able to determine what bug, if any, is causing your distress. Ask you doctor about that if he has not already ordered such a test. It may be that a simple antibiotic or probiotic will help.
My oncologist tried the cholestyramine, but it did me little good.
My salvation arrived in the form of tincture of opium. A couple doses of that and I was back to near normal. Opium tincture may be hard to get now that the junkies and pill mill quacks have the government all up in the air about anything stronger than aspirin.
Good Luck,
Charlie (grouchy German)
Some thoughts on Revlimid and its side effects: Since this medication irritates the entire digestive tract, starting with the mouth and ending you know where, I wonder, did you experience any mouth sores or irritation?
The gastric distress might be from the Revlimid itself, or perhaps the Revlimid irritates the lining of your gut to the extent you are easy prey for any transient bug that get inside there. A simple lab test should be able to determine what bug, if any, is causing your distress. Ask you doctor about that if he has not already ordered such a test. It may be that a simple antibiotic or probiotic will help.
My oncologist tried the cholestyramine, but it did me little good.
My salvation arrived in the form of tincture of opium. A couple doses of that and I was back to near normal. Opium tincture may be hard to get now that the junkies and pill mill quacks have the government all up in the air about anything stronger than aspirin.
Good Luck,
Charlie (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Welchol (colesevelam) for Revlimid related diarrhea
Hello Charlie.
I had read your post dated January 20, 2015. It seemed to have helped you at that time, but as you pointed out in that article, you had stopped all myeloma treatment a month earlier.
I did not have any mouth sores at all. I do not know if some patients develop mouth sores instead of the Revlimid rash. I developed the rash, only once on my hand on the 19th day of the Revlimid 21-days-on cycle during my Induction phase, and another time on the 11th day of my maintenance when the dex was stopped. That is when my oncologist switched my dosing to the every alternate day Revlimid.
I had a severe diarrhea in early March and it just kept getting worse. I finally went to see my PCP in mid April. I had been treated for H. pylori and I take omeprazole (Prilosec, Losec) for my acid reflux. I went through the lab tests to rule out any infections.
The cholestyramine is working very well for me for over 2 1/2 months. I experience loose stools every other morning, after I skip the cholestyramine on the alternate day when I take Revlimid. I have been managing that quite well. My diarrhea in March and April was so severe that it caused rectal bleeding (every time), and my whole colon may have been inflamed. My PCP prescribed some steroid suppositories that gave me only temporary relief.
I am glad you have had success with the tincture of opium. You had said, in your prior account, that you had tried an opium solution, but "nothing worked". Is this 'tincture' different? That is just for my own future reference, in case I need it, if and when the cholestyramine stops working for me.
I forgot, in my earlier post; but thanks to Mikeb for starting this discussion, and thanks to the forum moderator for posting more details about the British Study. The cholestyramine has certainly made my Revlimid side effects tolerable. I just asked my oncologist if I could modify my cholestyramine dosing, more on lines of what the patients were given in the British study.
Once again, the advice I have got on this forum has been extremely helpful.
I had read your post dated January 20, 2015. It seemed to have helped you at that time, but as you pointed out in that article, you had stopped all myeloma treatment a month earlier.
I did not have any mouth sores at all. I do not know if some patients develop mouth sores instead of the Revlimid rash. I developed the rash, only once on my hand on the 19th day of the Revlimid 21-days-on cycle during my Induction phase, and another time on the 11th day of my maintenance when the dex was stopped. That is when my oncologist switched my dosing to the every alternate day Revlimid.
I had a severe diarrhea in early March and it just kept getting worse. I finally went to see my PCP in mid April. I had been treated for H. pylori and I take omeprazole (Prilosec, Losec) for my acid reflux. I went through the lab tests to rule out any infections.
The cholestyramine is working very well for me for over 2 1/2 months. I experience loose stools every other morning, after I skip the cholestyramine on the alternate day when I take Revlimid. I have been managing that quite well. My diarrhea in March and April was so severe that it caused rectal bleeding (every time), and my whole colon may have been inflamed. My PCP prescribed some steroid suppositories that gave me only temporary relief.
I am glad you have had success with the tincture of opium. You had said, in your prior account, that you had tried an opium solution, but "nothing worked". Is this 'tincture' different? That is just for my own future reference, in case I need it, if and when the cholestyramine stops working for me.
I forgot, in my earlier post; but thanks to Mikeb for starting this discussion, and thanks to the forum moderator for posting more details about the British Study. The cholestyramine has certainly made my Revlimid side effects tolerable. I just asked my oncologist if I could modify my cholestyramine dosing, more on lines of what the patients were given in the British study.
Once again, the advice I have got on this forum has been extremely helpful.
-
K_Shash - Name: K_Shash
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2014
- Age at diagnosis: 67
Re: Welchol (colesevelam) for Revlimid related diarrhea
Things change over time and without a continuing conversation and follow ups, a lot gets lost along the way.
The cholestramine was effective for a time but as things progressed, not so much.
I did find the opium tincture effective later on, after I started doubling the prescribed dose. Doctor didn't seem to like that one bit but after all, I was the one living my life in the bathroom.
Now for a little confession that will give the DEA fits. When all else failed and I had to travel to see the doctor or get a treatment, I found that if I popped 2 Percocets (oycodone + acetaminophen / paracetamol) that would bind me up long enough to get things done. Fortunately, I had some of those heavy duty pain pills left over from a previous, unrelated ailment. I never even came close to addiction most likely because the side effect of those things kept me from taking any more than I had to.
Don't bother asking a doctor for opioid pain killers to control your bowel problems because they will probably think you live under a bridge somewhere and eat at a soup kitchen.
Charlie
The cholestramine was effective for a time but as things progressed, not so much.
I did find the opium tincture effective later on, after I started doubling the prescribed dose. Doctor didn't seem to like that one bit but after all, I was the one living my life in the bathroom.
Now for a little confession that will give the DEA fits. When all else failed and I had to travel to see the doctor or get a treatment, I found that if I popped 2 Percocets (oycodone + acetaminophen / paracetamol) that would bind me up long enough to get things done. Fortunately, I had some of those heavy duty pain pills left over from a previous, unrelated ailment. I never even came close to addiction most likely because the side effect of those things kept me from taking any more than I had to.
Don't bother asking a doctor for opioid pain killers to control your bowel problems because they will probably think you live under a bridge somewhere and eat at a soup kitchen.
Charlie
-
Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
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