Cholestyramine

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CoachDD
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Re: Cholestyramine

Post by CoachDD »

Greetings - thought I'd add that my FM doc has just recommended Welchol rather than cholestyramine (both are used off-label as they are cholesterol binding drugs). He also told me that he would only use compounded if we went with cholestyramine since "the usual form is full of garbage ingredients"...not exactly sure what that means. Based on my positive MARCoNS test, I will also start Biocidin nasal spray (with xylitol) - which is something I will need to get from a compounding pharmacy.
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Re: Cholestyramine

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I’ve been using Welchol for an extended period and my CIRS indicators have improved substantially. I take Welchol, despite the recent availability of some generics. All of the generics have inactive ingredients that aren’t in the brand Welchol, including things I would like to avoid (e.g., sodium lauryl sulfate and ammonia). I just wanted to mention this in case anyone is thinking of trying Welchol/colesevelam. The difference in inactive ingredients between the generics and the brand name version is much more substantial than what I have observed with other medications.
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Re: Cholestyramine

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CoachDD wrote:Greetings - thought I'd add that my FM doc has just recommended Welchol rather than cholestyramine (both are used off-label as they are cholesterol binding drugs). He also told me that he would only use compounded if we went with cholestyramine since "the usual form is full of garbage ingredients"...not exactly sure what that means. Based on my positive MARCoNS test, I will also start Biocidin nasal spray (with xylitol) - which is something I will need to get from a compounding pharmacy.
I'd very much like to hear about your experience with Welchol. I've read it's about 1/4 as effective as cholestyramine, but the effectiveness of cholestyramine is certainly lowered when one can't handle the full dose!

Your FM doc was referring to the inactive ingredients in the regular prescription forms of cholestyramine. I know of two forms, and they both contain undesirable ingredients. For example, the one form contains aspartame. The other form contains sugar. They both contain artificial food coloring.

Good luck with Welchol and Biocidin!
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Re: Cholestyramine

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LA18 wrote:I’ve been using Welchol for an extended period and my CIRS indicators have improved substantially. I take Welchol, despite the recent availability of some generics. All of the generics have inactive ingredients that aren’t in the brand Welchol, including things I would like to avoid (e.g., sodium lauryl sulfate and ammonia). I just wanted to mention this in case anyone is thinking of trying Welchol/colesevelam. The difference in inactive ingredients between the generics and the brand name version is much more substantial than what I have observed with other medications.
It's great how well Welchol is working for you. Have you had any side effects? Do you have to drink a lot of water with the Welchol tablets or powder (whichever form you are using)?

I tried to find out from my pharmacy what the inactive ingredients are for any Welchol generics they carry. Well, the pharmacist didn't know, and he won't know until someone orders a generic Rx. Well, I'm not going to request it be ordered just to find out what the inactive ingredients are. Earlier in the week, I did some online searching and couldn't find any information available about the Welchol generics. I guess it's too new (or else my search terms weren't sufficient).

My FM practitioner and I talked about a lot of things during my appointment this past week. I didn't get a chance to ask about switching to Welchol. I was practically scooting out the door while discussing my issues with cholestyramine. She suggested I keep trying and take 1/4 dose twice a day, and then work up to 1/2 dose twice a day.

I told her I was adding a half capful of MiraLAX to each dose. She didn't like that idea and suggested I increase my magnesium instead. She said MiraLAX is a chemical, and magnesium is natural. With both, I've found, it's all too easy to go too far the other way (diarrhea).
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Re: Cholestyramine

Post by LA18 »

I had a hard time finding the inactive ingredients as well. I found the Glenmark Pharmaceuticals version via DailyMed:
https://dailymed.nlm.nih.gov/dailymed/d ... 3d7a3130ff.

The one my pharmacy carries is made by Impax Generics:
https://dailymed.nlm.nih.gov/dailymed/d ... 5b95428a7c.

The Impax version doesn’t have ammonia, which is listed as being in Glenmark’s. And it was propylene glycol (in Impax’s version), not sodium lauryl sulfate, that I wanted to avoid.

There’s a third generic, made by Sun Pharmaceuticals, a sister company of the one that makes Welchol (Daiichi Sankyo). I could not find the inactive ingredients for Sun’s generic anywhere online. I called them and they sent me to Daiichi Sankyo. Then the person there sent me back to Sun. The second person I spoke with at Sun was going to send me the inactive ingredients via email but failed to do so. I’m not sure if this version is on the market yet. There’s a page for it on an FDA website, but the inactive ingredients aren’t listed.

I rather like my Welchol, in part because I also have high cholesterol. I take the capsules and they don’t bother my gut at all, despite the fact that it is generally very sensitive (I couldn’t tolerate cholestyramine). And it can be taken with food, which makes it much more likely that I’ll get the full dose in daily. I either take 2 capsules 3 times per day (ideal dose for binding) or 3 capsules 2 times per day (my usual these days since I’m trying to eat less frequently). I really haven’t had any side effects, and I don’t drink any more water than what I would without the drug.

My insurance will pay for the Welchol, and the copay is not as unreasonable as it is for some other brand name drugs, so I’m going to stick with that for now. If that changes, I’ll probably try the generic by Impax. I seem to be especially sensitive to the inactive ingredients in meds, and Welchol was working well for me, so I didn’t want to take a chance on a generic.

On another topic, I recently added S-Acetyl Glutathione to my regimen after you said you were taking it. Wow, this is really doing some good things. My energy is better and my eyebrows are growing (this is, oddly, something that happens when I start certain supplements – e.g., COQ10). I have chronically low glutathione levels (and high oxidative stress), presumably due to a GSTT1 deletion, so hopefully this is helping. I can’t take NAC, but I haven’t had any negative effects so far from the S-Acetyl Glutathione. Anyway, thanks for posting about that. I wasn’t aware that there was a viable alternative to liposomal glutathione, which I have not tolerated in the past.
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Re: Cholestyramine

Post by slacker »

Another possible avenue for getting less expensive brand name Welchol is to check out GoodRx. Variable discounts given, but can't use your insurance. Still quite pricey, but possibly less than other "cash pay" options.

Other option for those with non-government insurance (ie no Medicare or Medicaid) is getting a co-pay card through the brand name manufacturer. This may be another fruitless investigation, but potentially helpful to save some money.
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Re: Cholestyramine

Post by TheBrain »

LA18 wrote:I had a hard time finding the inactive ingredients as well. I found the Glenmark Pharmaceuticals version via DailyMed:
https://dailymed.nlm.nih.gov/dailymed/d ... 3d7a3130ff.

The one my pharmacy carries is made by Impax Generics:
https://dailymed.nlm.nih.gov/dailymed/d ... 5b95428a7c.

The Impax version doesn’t have ammonia, which is listed as being in Glenmark’s. And it was propylene glycol (in Impax’s version), not sodium lauryl sulfate, that I wanted to avoid.

There’s a third generic, made by Sun Pharmaceuticals, a sister company of the one that makes Welchol (Daiichi Sankyo). I could not find the inactive ingredients for Sun’s generic anywhere online. I called them and they sent me to Daiichi Sankyo. Then the person there sent me back to Sun. The second person I spoke with at Sun was going to send me the inactive ingredients via email but failed to do so. I’m not sure if this version is on the market yet. There’s a page for it on an FDA website, but the inactive ingredients aren’t listed.
LA18, thanks for providing these links and for trying to get the scoop on the Sun Pharmaceuticals generic.

The cholestyramine wasn't working for me. I could take enough MiraLAX or magnesium to prevent constipation, but then I'd go too far the other way (including in the middle of the night). And I was getting stressed out with the timing, with the medication needing to be taken away from meals and meds. The medication also brought on intestinal distress.

So my FM practitioner ordered the Welchol generic from Impax Generics. I hope I tolerate it better than cholestyramine. I'm starting it tomorrow.
I rather like my Welchol, in part because I also have high cholesterol. I take the capsules and they don’t bother my gut at all, despite the fact that it is generally very sensitive (I couldn’t tolerate cholestyramine). And it can be taken with food, which makes it much more likely that I’ll get the full dose in daily. I either take 2 capsules 3 times per day (ideal dose for binding) or 3 capsules 2 times per day (my usual these days since I’m trying to eat less frequently). I really haven’t had any side effects, and I don’t drink any more water than what I would without the drug.

My insurance will pay for the Welchol, and the copay is not as unreasonable as it is for some other brand name drugs, so I’m going to stick with that for now. If that changes, I’ll probably try the generic by Impax. I seem to be especially sensitive to the inactive ingredients in meds, and Welchol was working well for me, so I didn’t want to take a chance on a generic.
It's great to hear you tolerate Welchol so well, especially given that your gut is generally very sensitive. Is Welchol a horse pill? The generic one I'll be using is large. I don't usually have trouble swallowing big pills, but I take so many pills now, especially in the morning. I'll see, but I might have to back off of something.

This generic cost me $0 out of pocket, but the retail price is $470.99! I would think a generic would cost significantly less than the brand name Rx. But I don't actually know how much the brand name costs.
On another topic, I recently added S-Acetyl Glutathione to my regimen after you said you were taking it. Wow, this is really doing some good things. My energy is better and my eyebrows are growing (this is, oddly, something that happens when I start certain supplements – e.g., COQ10). I have chronically low glutathione levels (and high oxidative stress), presumably due to a GSTT1 deletion, so hopefully this is helping. I can’t take NAC, but I haven’t had any negative effects so far from the S-Acetyl Glutathione. Anyway, thanks for posting about that. I wasn’t aware that there was a viable alternative to liposomal glutathione, which I have not tolerated in the past.
This is great news!
ApoE 4/4 - When I was in 7th grade, my fellow students in history class called me "The Brain" because I had such a memory for detail. I excelled at memorization and aced tests. This childhood memory helps me cope!
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