Go to Home Page
Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery
  Username:    Password:      Remember me       
MICROSCOPIC COLITIS SUPPORT Forum Index

You can get your life back
MICROSCOPIC COLITIS SUPPORT
Discussion and Support Forum for Collagenous Colitis, Lymphocytic Colitis, Microscopic Colitis, Mastocytic Enterocolitis, and Related Issues

MICROSCOPIC COLITIS SUPPORT Forum IndexVisit the Microscopic Colitis Foundation Website
 

The only comprehensive book ever written about Microscopic Colitis
Can be ordered at any bookstore or library
 FAQFAQ  RulesRules   SearchSearch   MemberlistMemberlist   UsergroupsUsergroups  ChatChat   RegisterRegister 
 ProfileProfile   Log in to check your private messagesLog in to check your private messages   Log inLog in 
 World Time Clock--Time ZonesPotty People T-ShirtsPrivacy Policy
Google
SearchSearch The Archives of This Discussion Board
Bile Acid Binders
Goto page 1, 2, 3  Next
 
Post new topic   Reply to topic       MICROSCOPIC COLITIS SUPPORT Forum Index -> Main Message Board
 View previous topic :: View next topic  
Author Message
HockeyMom
Adélie Penguin
Adélie Penguin


Joined: 01 Oct 2011

Posts: 190
User's local time:
2017 Dec 11 - 12:38 AM


Food Intolerances : Gluten, dairy, soy, rice, chicken, almond, etc/etc/etc/etc...
Location: Colorado

PostPosted: Sun Sep 10, 2017 12:03 pm    Post subject: Bile Acid Binders Reply with quote

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
_________________
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Back to top
Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5165
User's local time:
2017 Dec 11 - 2:38 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Mon Sep 11, 2017 8:27 am    Post subject: Reply with quote

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
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Back to top
HockeyMom
Adélie Penguin
Adélie Penguin


Joined: 01 Oct 2011

Posts: 190
User's local time:
2017 Dec 11 - 12:38 AM


Food Intolerances : Gluten, dairy, soy, rice, chicken, almond, etc/etc/etc/etc...
Location: Colorado

PostPosted: Mon Sep 11, 2017 8:49 am    Post subject: Reply with quote

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
_________________
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Back to top
Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5165
User's local time:
2017 Dec 11 - 2:38 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Mon Sep 11, 2017 9:29 am    Post subject: Reply with quote

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
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Back to top
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30822
User's local time:
2017 Dec 11 - 1:38 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Mon Sep 11, 2017 11:03 am    Post subject: Reply with quote

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
_________________
cowboy

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.
Back to top
HockeyMom
Adélie Penguin
Adélie Penguin


Joined: 01 Oct 2011

Posts: 190
User's local time:
2017 Dec 11 - 12:38 AM


Food Intolerances : Gluten, dairy, soy, rice, chicken, almond, etc/etc/etc/etc...
Location: Colorado

PostPosted: Mon Sep 11, 2017 11:14 am    Post subject: Reply with quote

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
_________________
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Back to top
brandy
Rockhopper Penguin
Rockhopper Penguin
unknown IP

Joined: 16 Oct 2011

Posts: 1988
User's local time:
2017 Dec 11 - 1:38 AM


Food Intolerances : gluten, dairy, soy, corn, sugar, quinoa, rasberries, blackberries
Location: Florida

PostPosted: Mon Sep 11, 2017 11:43 am    Post subject: Reply with quote

I am temporarily on the Sandoz brand. (Hey I'm in the middle of a hurricane.) I find I am well controlled with a tiny dose. I'm currently taking 1/4 of a sachet a day. Prescribed dose was 2 sachets per day. I've never tried an other brands.
Back to top
Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5165
User's local time:
2017 Dec 11 - 2:38 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Mon Sep 11, 2017 5:20 pm    Post subject: Reply with quote

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
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Back to top
HockeyMom
Adélie Penguin
Adélie Penguin


Joined: 01 Oct 2011

Posts: 190
User's local time:
2017 Dec 11 - 12:38 AM


Food Intolerances : Gluten, dairy, soy, rice, chicken, almond, etc/etc/etc/etc...
Location: Colorado

PostPosted: Tue Sep 12, 2017 10:08 am    Post subject: Reply with quote

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
_________________
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Back to top
dfpowell
Gentoo Penguin
Gentoo Penguin


Joined: 03 Apr 2013

Posts: 486
User's local time:
2017 Dec 11 - 1:38 AM


Food Intolerances : Gluten Free
Location: Lakeville, Minnesota

PostPosted: Tue Sep 12, 2017 12:04 pm    Post subject: Reply with quote

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
Back to top
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30822
User's local time:
2017 Dec 11 - 1:38 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Tue Sep 12, 2017 12:20 pm    Post subject: Reply with quote

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. x fingers

Tex
_________________
cowboy

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.
Back to top
Polly
Moderator
Moderator


Joined: 25 May 2005

Posts: 5165
User's local time:
2017 Dec 11 - 2:38 AM


Food Intolerances : gluten, dairy, soy, corn, yeast, chocolate, tomato, white potato, celery, sesame, carrot, yellow squash, lamb, pork, mango, strawberry, almond, cashew, vanilla, grapefruit, raspberry, avocado, mustard, paprika, cauliflower, cucumber, plum, and more!
Location: Maryland

PostPosted: Tue Sep 12, 2017 8:24 pm    Post subject: Reply with quote

Laine,

Like Tex, I am keeping fingers crossed for success with the Sandoz brand. Hang in there.

Love,

Polly
_________________
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Back to top
Pam V
Adélie Penguin
Adélie Penguin


Joined: 11 Jun 2017
Posts: 91
User's local time:
2017 Dec 11 - 2:38 AM


Food Intolerances : Gluten, Casein, Soy and Egg
Location: Boston, MA

PostPosted: Wed Sep 13, 2017 6:16 am    Post subject: Reply with quote

Hey All -

Might I ask, what would be the reason(s) one takes a Bile Acid Binder? Is it something most people w/MC take at some point?

I'm still a fledgling here - thanks to you all I feel like I'm finally getting me feet under me.

Thanks so much - love and wishes for norman to all -

Pam
Back to top
tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30822
User's local time:
2017 Dec 11 - 1:38 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Wed Sep 13, 2017 7:18 am    Post subject: Reply with quote

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
_________________
cowboy

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.
Back to top
HockeyMom
Adélie Penguin
Adélie Penguin


Joined: 01 Oct 2011

Posts: 190
User's local time:
2017 Dec 11 - 12:38 AM


Food Intolerances : Gluten, dairy, soy, rice, chicken, almond, etc/etc/etc/etc...
Location: Colorado

PostPosted: Wed Sep 13, 2017 9:02 am    Post subject: Reply with quote

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
_________________
"Do what you can, with what you have, where you are"-Teddy Roosevelt
Back to top
Display posts from previous:   
Post new topic      Reply to topic    MICROSCOPIC COLITIS SUPPORT Forum Index -> Main Message Board All times are GMT - 6 Hours
Goto page 1, 2, 3  Next
Page 1 of 3

 
Jump to:  
You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot vote in polls in this forum

Remove cookies set by this forum

Search online dictionaries
(Powered by OneLook® Dictionary Search)
Enter word or phrase:
Enter a word to search for dictionary web sites that include that word.
Enter a pattern consisting of letters and wildcards to search for words.
Valid wildcards are * (matches multiple letters) and ? (matches one letter).
Locations of visitors to this page


Powered by phpBB © 2001, 2005 phpBB Group
IP Country Flag 2.9.6b © 2005, 2008 - 3Di (aka 3D)

Copyright © 2005–2017 perskyfarms.com, All Rights Reserved

Copyright Notice: The material on this site is copyrighted by perskyfarms.com, and it is protected from unauthorized copying and dissemination by United States copyright law, trademark law, international conventions, and other intellectual property laws. This copyright protection also extends to any and all images, found on any and all pages of this site.

Please contact us at this address for permission, if you wish to use any material on this website for any commercial or public purpose.

We have made a good faith effort not to violate any copyright. If we have unknowingly done so, please contact the site administrator, at this address, and the issue will be promptly corrected.

Disclaimer: The information contained within this site is intended solely for general educational purposes, and is not intended, nor implied, to be a substitute for professional medical advice relative to your specific medical condition or question. Anyone who chooses to use any information found here, does so at his or her own risk. Always seek the advice of your physician or other health care provider for any questions you may have regarding your medical condition. Only your physician can provide specific diagnoses and therapies. By using this site you agree to the following terms and conditions:

Certain members of this discussion board are practicing medical professionals. They are not here to offer medial advice, they are here because they have been diagnosed with microsopic colitis, and they are interested in sharing their own personal experiences concerning the disease, and learning from others in all walks of life, who also have to deal with these issues. If you have any questions or concerns regarding your health, you should consult with your own doctor, or medial professional.

If you think you may have a medical emergency, call your doctor, or 911, immediately. The members of this board, regardless of whether or not they are medical professionals, cannot respond to issues requiring urgent medical attention. Please note that no legal action can be taken by any user of this site, as a result of any information found here, and that none of the parties involved, neither individually, nor collectively, nor the owner of this site, can be held responsible for any information offered in the course of discussions, regardless of circumstances, whether those discussions are in a public or private form, and regardless of whether of not any of the parties involved are professionals. Remember that this discussion board is not intended to be a replacement for a consultation with your doctor or other medical professonal, it is intended as a sharing of knowledge and information from the research and personal experience of the members of this discussion board.

This site does not recommend or endorse any specific tests, products, procedures, opinions, or other information that may be mentioned anywhere on this site. Reliance on any information provided here is solely at your own risk.

Main Message Board | Treatment Discussions | Polls | MC FAQs | Recipes | Information Sites | Medication Info | Diet Info | Jokes | Photo Gallery