For those of us using bile acid binders...has anyone had different results with different types?? I have been taking PAR Pharmaceutical powdered cholestyramine for coming up a year right now and have been all over the place with dosage/degree of effectiveness, etc. I have been on a very restricted diet for about a year and a half now with a couple miss steps of trying to add things back in when things were going well (and I mean like salmon, quinoa, etc...not going crazy here people!!). I have been GF, DF and SF for 6 years...havent done any grains for maybe 6 months as I tested out on Enterolab a year ago reacting to like everything with rice being the worst...react to white potato so cut those and nightshades out also... Sweet potato has been my starchy type food, and those are the white ones
I havent eaten out in 9 months. In hindsight I guess things go bad when I try and lower the cholestyramine dosage...I got concerned about 3.5 weeks ago that my poop/semi solid poop/liquid poop was now floating which to me sort of meant that maybe I didn't need the cholestryamine...so quit it for a week and a half and went very, very bad. I sit here today on day 2 of not being able to go to work due to liquid diarrhea, and wont be there tomorrow either so any-
thing past that means jumping thru the time off work process/dr's visits/short term disability, etc. More stress basically. I started up again with the chole-
styramine at 4 packets a day a week ago and am hoping to turn the corner soon... Who knows what is the idea amount for me?? 2-3/day?? I break it up am/pm and take supplements with lunch. I've looked at the archives and see where others have taken different types, and so my question is..did another brand/type make a difference. No, I don't have the "lite" stuff.
I also think that way back when I figured out that my co insurance payment for Welchol was like $400/month, the cholestyramine is cheap in comparison. Anyone use Colestipol?? See that is a generic...
Just wanting some feedback. I know that stress in my life continues to be an issue and had one counseling session last week and was supposed to go for next session after work tomorrow...just cancelled that and an initial acupuncture session as I am sure that I won't be able to get out of the house. Immodium doesn't seem to do anything for me anymore, back in the "bad old, good old days" before everything went crazy in my life it always worked.
Laine
Bile Acid Binders
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Bile Acid Binders
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Hi Laine!
I am very well-controlled on cholestyramine (regular, not lite)! However, it HAS to be the SANDOZ brand. I started out on it, was doing well, and then after some months things deteriorated. I realized that I had been given the PAR brand just before things went south. I went back on the SANDOZ and have done well since. My GI doc has to specify Sandoz brand when she writes a script. Luckily, my pharmacy carries Sandoz at present but that could change. If they stop stocking it, I will find another pharmacy that does.
I had done some research online and found someone who had this same issue with the Sandoz vs. the Par.....that's why I went back on the Sandoz.
I hope this helps. Good luck, and keep us posted.
Love,
Polly
I am very well-controlled on cholestyramine (regular, not lite)! However, it HAS to be the SANDOZ brand. I started out on it, was doing well, and then after some months things deteriorated. I realized that I had been given the PAR brand just before things went south. I went back on the SANDOZ and have done well since. My GI doc has to specify Sandoz brand when she writes a script. Luckily, my pharmacy carries Sandoz at present but that could change. If they stop stocking it, I will find another pharmacy that does.
I had done some research online and found someone who had this same issue with the Sandoz vs. the Par.....that's why I went back on the Sandoz.
I hope this helps. Good luck, and keep us posted.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Whats the difference between the brands Polly? I see the PAR brand contains sucrose....any idea??? It's the only stuff I've used and wonder if that is the only "generic" equivalent that my insurance will cover. Is Sandoz a generic??
Elaine
Elaine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
I don't know the comparison, only that Par does not work for me. Sandoz regular has sucrose too. Sandoz is a generic too. If you can prove that you do better on the Sandoz, your doc can ask your insurance for an exception, I believe.
Polly
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Unless the price is tremendously high, I never let insurance dictate the pharmaceutical products I use. If a product works, and the products covered by insurance do not work, I pay for it out of pocket to get what I need. I don't know if it could be said that remission is priceless, but it's dang sure worth more than most insurance coverage is worth, IMO.
Just my 2 cents worth.
Tex
Just my 2 cents worth.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
I get you Tex. I just sent a message to the PA at my PCP's office to see if they will call in the Sandoz brand for a month's worth to see it that works any better than the PAR brand. I only know about the price of the Welchol as when I sort of went down the tubes last November and asked about it at the pharmacy as an alternative I was told that since it wasn't a generic my monthly copay was like $450 or something. That's a car payment for goodness sake!! But if that's what it takes....I guess you could always go online and see if it was cheaper online... But that's neither here nor there right now.
I think I have now gotten it through my thick skull that I need this stuff. Anytime I seem to be doing better and I cut it down (because it does seem to make me bloaty..), or this time stop it totally for a week and a half, things go bad. I think I understand that this time.
Laine
I think I have now gotten it through my thick skull that I need this stuff. Anytime I seem to be doing better and I cut it down (because it does seem to make me bloaty..), or this time stop it totally for a week and a half, things go bad. I think I understand that this time.
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Laine,
Welchol still has a patent for its brand name, so it is not a generic and therefore ridiculously expensive. The generic Sandoz cholestyramine should be a lot cheaper. Plus, I would not want to take Welchol - it uses aspartame as its sweetener, not sucrose. I am NOT a fan of aspartame. You really need to be patient with the bile binders - it can take weeks to find the perfect dose.
Brandy,
Happy to hear you are doing well. I am currently on one sachet per day. But sometimes I can do less. Several months ago I went an entire mo. with none at all. Go figure! Hope you have survived the hurricane with minimal disruption. It appears you do have power, at least, since you are online.
Tex,
I hear you and totally agree. Nothing is more important than my health, and I will pay out of pocket if need be. A case in point - I am trying to eat as much organic, non-GMO food as possible (especially now with the research coming out about the association of Roundup and maybe GMOs with gluten sensitivity). And yes, it does cost more! But I feel that my health is the number one priority to spend my $$$ on.
Love,
Polly
Welchol still has a patent for its brand name, so it is not a generic and therefore ridiculously expensive. The generic Sandoz cholestyramine should be a lot cheaper. Plus, I would not want to take Welchol - it uses aspartame as its sweetener, not sucrose. I am NOT a fan of aspartame. You really need to be patient with the bile binders - it can take weeks to find the perfect dose.
Brandy,
Happy to hear you are doing well. I am currently on one sachet per day. But sometimes I can do less. Several months ago I went an entire mo. with none at all. Go figure! Hope you have survived the hurricane with minimal disruption. It appears you do have power, at least, since you are online.
Tex,
I hear you and totally agree. Nothing is more important than my health, and I will pay out of pocket if need be. A case in point - I am trying to eat as much organic, non-GMO food as possible (especially now with the research coming out about the association of Roundup and maybe GMOs with gluten sensitivity). And yes, it does cost more! But I feel that my health is the number one priority to spend my $$$ on.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Well, found out that Walgreens carries that Sandoz brand so the Dr's office is supposed to call that prescription in today for me. I can have someone pick it up for me. Ya Polly, I know the Welchol isn't generic!!
I've been up/down on the PAR brand choleystyramine for a year. Initially it seemed like 2 to 2/5 packets a day were the miracle drug for me...tried to drop down from there and things went bad. High dosage was 4 packets a day...right now I am doing 5 a day to just see it this can stop or not. I thought yesterday was a better day as I had diarrhea in am, was ok all day with really no rumbles/grumbles then went bad while watching the Broncos on tv and had 2 episodes during the night. 6 immodiums didn't seem to solidify anything yesterday..
I am off today and tomorrow for new carpet installation in my townhome. Have given my supervisor a heads up that most likely I won't be there Thursday or Friday so that starts the whole off work thing, short term disability thing (again..), dr's visits to document the fact I cant work, etc.
I would gladly pay WHATEVER it took to make me functional again guys. I have no other life so spending money on food/meds is fine with me. I have been so up/down with this for the past year..I just am having trouble seeing a light at the end of the tunnel, and looking like a skeleton doesn't help any. Maybe I really just need a whole lot of cholestyramine for an extended period of time to get settled down. I continue to eat meat/food 3x a day in hopes that I completely don't blow away...seems sort of stupid given the fact that it just comes blowing out the other end in liquid form...oh well. I obviously have malabsorption issues going on. Disability is looking like something I am going to seriously look at long term. Super...
Thanks for listening people. I was just hoping to see something happening a little quicker with the upped cholestyramine (been taking 4 packets a day again for a week and a half..). I appreciate everyones support, I know we all have different roads to travel and I just have to keep travelling down my own road and keep out of the ditch...
Laine
I've been up/down on the PAR brand choleystyramine for a year. Initially it seemed like 2 to 2/5 packets a day were the miracle drug for me...tried to drop down from there and things went bad. High dosage was 4 packets a day...right now I am doing 5 a day to just see it this can stop or not. I thought yesterday was a better day as I had diarrhea in am, was ok all day with really no rumbles/grumbles then went bad while watching the Broncos on tv and had 2 episodes during the night. 6 immodiums didn't seem to solidify anything yesterday..
I am off today and tomorrow for new carpet installation in my townhome. Have given my supervisor a heads up that most likely I won't be there Thursday or Friday so that starts the whole off work thing, short term disability thing (again..), dr's visits to document the fact I cant work, etc.
I would gladly pay WHATEVER it took to make me functional again guys. I have no other life so spending money on food/meds is fine with me. I have been so up/down with this for the past year..I just am having trouble seeing a light at the end of the tunnel, and looking like a skeleton doesn't help any. Maybe I really just need a whole lot of cholestyramine for an extended period of time to get settled down. I continue to eat meat/food 3x a day in hopes that I completely don't blow away...seems sort of stupid given the fact that it just comes blowing out the other end in liquid form...oh well. I obviously have malabsorption issues going on. Disability is looking like something I am going to seriously look at long term. Super...
Thanks for listening people. I was just hoping to see something happening a little quicker with the upped cholestyramine (been taking 4 packets a day again for a week and a half..). I appreciate everyones support, I know we all have different roads to travel and I just have to keep travelling down my own road and keep out of the ditch...
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt
I have been on the Sandoz Choletyramine, thanks to Polly sharing her information, for over 2 years, and I go up and down in my dose depending how my gut is functioning. I have occasional flares, related to decreasing my dosage, but overall I am satisfied with the control I am able to achieve. I am on anywhere from 1/2-2 scoops/day. Occasionally I have been able to discontinue for a short period of time. I did try the Colestipol, but it did not work for me. Hope you can find something that works.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Laine,
Remember what Einstein said about taking more of a bad med and expecting better results. (Okay, he really didn't say anything about taking meds, actually he was talking about doing the same thing and expecting different results.)
Don't let the poor results from the PAR brand discourage you. Let's see what the Sandoz stuff will do.
Tex
Remember what Einstein said about taking more of a bad med and expecting better results. (Okay, he really didn't say anything about taking meds, actually he was talking about doing the same thing and expecting different results.)
Don't let the poor results from the PAR brand discourage you. Let's see what the Sandoz stuff will do.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Check out these old threads:
A New Way to Look at MC
More on Bile Acids (an important piece of the MC puzzle?)
Polly has been interested in this for a long time, as you can see from these old threads from eleven years ago:
Continuing Mike's thread on bile acid malabsorption
Marsha and all - on SIBO
Tex
A New Way to Look at MC
More on Bile Acids (an important piece of the MC puzzle?)
Polly has been interested in this for a long time, as you can see from these old threads from eleven years ago:
Continuing Mike's thread on bile acid malabsorption
Marsha and all - on SIBO
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
So, I just took 2nd dose of the Sandoz cholestyramine...let's see what happens. Still total liquid diarrhea this am at 0420 and 0800. Fingers crossed. I'm waiting for the carpet guys to show up to finish the job. My townhome is now covered in dust from commercial construction nearby and carpet!! At least I will have something to do when I'm not at work tomorrow and the rest of the week...
I read a few of the cholestyramine posts again....had looked at them last fall but not recently. I am interested in the FGF 19 thing Polly and Tex..is this a genetic thing?? I definitely have gut issues on my grandmothers side of the family-no flaming AI stuff except for my aunt on that side who had bad RA and wicked gut/diarrrhea issues (she died last year). My grandmother was Swedish..and I notice that we have quite a few folks on this site who have Norwegian or Swedish (more Norwegian it seems) flags flying by their names..I'm wondering if this is more common in the Scandinavian countries??
So, diarrhea issues are not something that people talk about at the dinner table, ya know?? And these folks were all Nebraska farm folks...just suck it up and soldier on is how they dealt with things.. I know that my aunt was the worst but that my grandmother, other aunt and mother all have/had diarrhea issues. My mom and other aunt who is still alive have lesser symptoms it seems, but my mom always has been a mess in the morning. Funny enough she did cholestyramine for cholestrol issues a few years ago and (in hindsight when I questioned her..) she didn't notice any change in her morning diarrhea with one scoop per day. I have talked to her about maybe asking for a new prescription for it and take more for her guts just to see if it made any difference or not. She has not done that...
Just sitting here this am and thinking folks...
Laine
I read a few of the cholestyramine posts again....had looked at them last fall but not recently. I am interested in the FGF 19 thing Polly and Tex..is this a genetic thing?? I definitely have gut issues on my grandmothers side of the family-no flaming AI stuff except for my aunt on that side who had bad RA and wicked gut/diarrrhea issues (she died last year). My grandmother was Swedish..and I notice that we have quite a few folks on this site who have Norwegian or Swedish (more Norwegian it seems) flags flying by their names..I'm wondering if this is more common in the Scandinavian countries??
So, diarrhea issues are not something that people talk about at the dinner table, ya know?? And these folks were all Nebraska farm folks...just suck it up and soldier on is how they dealt with things.. I know that my aunt was the worst but that my grandmother, other aunt and mother all have/had diarrhea issues. My mom and other aunt who is still alive have lesser symptoms it seems, but my mom always has been a mess in the morning. Funny enough she did cholestyramine for cholestrol issues a few years ago and (in hindsight when I questioned her..) she didn't notice any change in her morning diarrhea with one scoop per day. I have talked to her about maybe asking for a new prescription for it and take more for her guts just to see if it made any difference or not. She has not done that...
Just sitting here this am and thinking folks...
Laine
"Do what you can, with what you have, where you are"-Teddy Roosevelt