So I’ve complained about Cholyestramine before. It tastes horrible, its messy, and it feels like I’m drinking wet sand. Also, I feel like it never really worked.
So I had a meeting with my docs the other day and they wrote me for something called colestipol. 16 grams a day. Sixteen giant pills. 8 of them, twice a day. I’ll say this much. I don’t care how large or how many pills I have to take. Anything is better than an oral suspension powder.
So, for any of you taking Cholyestramine and dislike it as much as I did, Colestipol is a solution.
Anyone else have any luck with anti-itch remedies that don’t involve orange flavored wet sand?
I'm a little late on the topic, but thought I'd throw in my two cents.
Cholyestramine is MUCH better when consumed as follows: use a ~450ml/15oz plastic bottle with a screw on lid, put several ounces of orange juice (the kind with some pulp) in the bottle (it should not be more than half full), add the powder, tighten lid, shake well for 15-30 seconds, and then bottoms up. The shaking is infinitely better at dispersing the powder throughout the liquid (no globs of dry powder) and the pulp helps hide the "grit". I'm glad you found something that works for you.
Thanks for sharing. Just wondering - how much cholyestramine do you add to the bottle? I was on 12g a day, so three packets.
I got my powder in a can/tub. A full one contains 378g. I typically took one scoop (9 grams per scoop) every morning. When the itching was bad, I'd take it twice a day. I found that if I missed a dose for some reason, it might take a day or two for the itching to get worse and it always took a day or two for it to get better. I got the general sense that what I take (or didn't take) would have an effect on how I felt a day or two later.
The other thing that I found interesting: I had gall bladder problems (let’s call them gall stones to keep it simple) that led to an attack (serious discomfort/pain for 12-18 hours) a couple times a year. I had my gall bladder removed about 18 months ago and I haven't had to take anything for itching since. All the itching is gone! :)
Thanks Steve. Really helpful - now I just need the docs to remove my gall bladder (hey... what's one more organ, right?)
Just a little transplant humor there.
HI Dave: Are there any sides effects with the Colestipol? I’m currently taking naxtrone (?) only when needed. It makes me very drousey but it does work. Last night I had to take a pill because I was itching like crazy!! So far, for me PSC has just caused High Liver Profiles and ITCHING!!! Let me know…thanks
None that I am aware of. Caused virtually nothing for me. Just helped with the itching. Still there, but much less prevalent. I went from scratching myself bloody to the occassional itch (which I think may just be a left over habit from years of itching).
Steve's comment below is the most relevant. I prefer the pill form; he takes the powder, but the important thing to do is to keep the dose stable. I typically take 4 pills in the morning, 4 in the evening. I've found that when i miss doses is when i start to feel itchy again, and it normally takes about 48 hours to return to normal.
Also, you have to take it either an hour after, or 4 hours before other medications (esp URSO) so there is a little bit of timing involved.
I see a liver Specialist in Philadelphia and he wanted to put me on Rifamoin (which is an antibotic). My pharmacy even question me about it because he wrote the script for itching. OK, I will take anything for the itching too stop but this medication has some serious side effects. I would need to have blood work monthly just to check my liver profiles. It’s also makes your tears and urine turn orange. I’ve read many stories online about the side effects and what it has done to other people. I’m not willing to go that far yet!!! MY GI doctor said if the Liver Specialist wrote the script than I should try it. I’m calling today to see if I can get a prescription of Colestipol. So, it doesn’t make you feel tired or drowsey??? I also have tried every lotion/cream for itching. I like the Gold Balm medicated Lotion, Avveno and Keri and of course cortizone creams work too!!! I was on vacation two weeks ago in the Riveria Maya and didn’t itch not one time…Hmmmm, maybe, it’s related to stress and lot’s of sun!!! lol Thanks for the info.
I was on Rifampin before and I wouldn't recommend it. Aside from the odd coloration (which totally happens) its a diesel antibiotic... it made me nauseous and exhausted while I was on it. The trade off wasn't worth it. Now, that doesn't happen to everyone, but it definitely happened to me - and I'm not sensitive to side effects. I've done prednisone, azathoropine and other strong anti inflammatory and immunosuppresive drugs without having side effects.
Colestipol really doesn't have any sort of drowsiness effects. It's by far the best itch treatment I've taken.
My current preferred method for taking Cholestyramine is about 4 oz of coconut milk in a blender, to which you add one half a bananna, a few frozen strawberries, a scoop of lime sherbet, and the packet of cholestyramine. Blend for 30 seconds. It is much more palatable that way and definitely keeps the itching under control. The coconut milk adds some useable triglycerides. The cholestyramine also decreases my diarrhea and helps keep my high cholesterol down. I haven’t tried the Colestipol yet.