How best to take Colestyramine (Cholestyramine) please?

[Ernest2]

Silly Question: Would anybody know or have experience of how best to take Colestyramine (Cholestyramine in USA) for bile acid issues?

i.e. When to take is in relation to meals and snacks, including time after/before eating or whatever.

The patient info leaflet (PIL) only gives the warning about other drugs, so 1 hour min after other drugs before taking Colestyramine, and wait 4 to 5 hours (not sure why two options) after taking Colestyramine before getting back on other drugs.

In my case I'm taking it for suspect bile acid issues for an upset digestive system I've had since foolishly taking prophylactic antibiotics over a year ago now.

I've had some success with Colestyramine, but I'm not sure I'm taking it the best way. The GP has no information nor can give me a meaningful referral to date as best I understand (I will keep asking).

The only reference I can find is from Mayo clinic, which suggests for bile acid to take before meals but doesn't give a time interval before the meal:

mayoclinic.org/drugs-supple....

Now Colestyramine (hint in the name) is an old fashioned Cholesterol medication, but as it absorbs bile in the gut you can take it for excess bile acid issues, as my suspect (but not confirmed) case. Confusingly I was also on statins for very high cholesterol (thought to be a polygenic case, note I'm a treated leukaemia patient probably with lots of mixed up genes). I have stopped taking statins whilst I take Colestyramine. The GP had not considered this potential overload at the initial prescription.

Previously I've taken Colestyramine with meals on the GP advice (Wrong I think) and got stopped after about 11 days with pain in the lower legs rendering me unable to walk. Note Colestyramine inhibits the uptake of vitamins A, D, E, K also folic acid, so I think it will be important when to take it and getting the dose right. I do eat spinach in sensible dose on a one week on, one week off basis (Watch out for Oxylate overloading . . . ) My GP generally does not provide vitamin testing now, I assume to avoid the deluge of "worried well" patients that would result. I will still ask though for a vitamin D test (I'm on the maximum RDA for that), once I can take the Colestyramine for long enough to be able to organise a blood test as part of GOV mandated annual health review.

In my current trial I'm taking Colestyramine just before meals (as per Mayo above) and now got up to 9 days. I've also seen a massage therapist to learn how best to massage my legs (good way to wake up in the morning but avoid jumping straight out of bed and resultant lower leg injuries).

Aside: I'm also trying taking Psyllium after meals (I learned about Psyllium from bad experience of prohylactic antibiotics with chemo many years ago. In that case it was 5 years of upset, and only sorted when I did the FODMAP diet)

One strange feature (as best I understand) is that bile returns from your gut back to the liver via the bloodstream. Bile issues can give unpleasant side effects including Pruritus and it seems it may be the excess bile in the bloodstream rather than the gut that is the cause of that. I have found low dose anti-histamines (e.g. Cetirizine 5mg avail as cheap generics) help with Pruritus.

P.S. Please remember there is no identified disease of "IBS" it just simply means in many cases your medical team hasn't yet diagnosed what is wrong with you (it's not easy), and/or you may simply be eating a bad diet. So please don't give up on trying to figure it all out, and if you can please join the IBS Network Charity for support and help as you need.

Best Wishes to all,

Ernest

[Pollyboo]

Hi Ernest2, I don't know how many sachets of colestyramine you take a day. I have IBS and had my gallbladder removed 10 yrs ago. I have taken colestyramine since my op. I only take one sachet a day and I find the best time for me is about 1hr before my evening meal then other meds can be taken at the start of the day and at bedtime. I always take vitamin D suplement as well. One sachet works well for me any more and I have lots of wind. There is a website about bile acid malabsortion which is quite helpfull. I also found my local pharmercist very helpfull today when I spoke to him about taking other meds with colestyramine.I am not sure if I have been any help to you but take care and I hope things work out for you, Pollyboo

[Ernest2 in reply to Pollyboo]

Many thanks Pollyboo for that.

I now take X3 sachet per day, one before each meal, then psyllium after the meal.

Interesting with no gallbladder why/how Colestyramine helps.

I'm on full dose Vitamin D and will ask for a retest when I have my annual health checks done.

I'm on Colestyramine day 12 now which is the furthest I've got so far without leg total cramps. Guess I can't take it continuously but not sure how to devise a pattern, nor if Loperamide might be a good idea or not on the days off. My symptom is generally only in the morning so I can handle if I'm not going out.

I am hoping in my case that taking Colestyramine for some period (I don't know how long, perhaps say at least a year) might let my system recover from being insulted by prophylactic antibiotics over a year ago. Last time (with no treatment except Psyllium) it took 5 years and only resolved with FODMAP that nolonger works for me.

Best wishes,

Ernest

[Pollyboo in reply to Ernest2]

Hi Ernest,Just to answer your question about colestyramine after my gallbladder op.

I have had IBS for 20yrs and 10 yrs ago had gallbladder removed.

The gallbladder stores bile and if you no longer have a gallbladder the bile drips into your stomach all the time, which can in some people cause a laxitive efect. The colestyramine binds the bile and takes it through the digestive system so that it can not irritate the colon.

I do take loperamide if I need if my IBS is having a bad day. Mornings are my bad time too. Have tried FODMAP twice both with dietitions but they do not work for me.

Hope this has been of help to you take care Pollyboo

[Ernest2 in reply to Pollyboo]

Many thanks Polly that is most helpful.I've been wondering what the bile acid profile looks like in healthy and non healthy people. The following paper contains a theoretical graph (press the download buttons under the fuzzy picture to get one you can read):

sciencedirect.com/science/a...

That shows max ratio about 3 to 1 day to night time, and some daytime dips. I need to do more research and find something to confirm that, and understand better how I should use that information.

It does make me think in anybody with a problem that night time bile might well be an issue for excess bile upsetting things. The alternative of course is just the gut wall if damaged simply can't handle that baseload level of bile acids, and you are stuck in a vicious circle from which you can't recover.

Odd thing is I only digest my food slowly so think I would have to eat very early in the evening to risk taking Colestyramine like a statin last thing before bed.

Many thanks again.

Best wishes,

Ernest

[Joes_Nanny]

Hi Ernest,

I take Colestyramine for IBS and to keep my cholesterol in check. I too am taking only one sachet a day like Pollyboo mentioned, as if I take more it causes constipation. I take mine before going to bed so it doesn’t interfere with any other medications when taken at that time. As the effects of Colestyramine last over the day this suits me fine. I hope this will have been a little help to you.

[Ernest2 in reply to Joes_Nanny]

Hi Joe's Nanny

I'm taking it for different reason for a bile acid issue (but don't know which one).

Interesting to take it for Cholesterol and it works at night time ( like you take statins)

I need to understand better what a typical bile production profile looks like. It's prob more flatline than I was thinking. Graph in following (don't understand this yet)

sciencedirect.com/science/a...

Silly question: Can I ask what put you off statins?

I've had big problems with leg cramps but workaround now by massaging my legs twice a day. Once before getting out of bed.

Best wishes,

Ernest

[Joes_Nanny]

Hi Ernest,

Yes the Statins made my legs weak and another relative had the same problem, they seem to cause problems generally for a lot of folks. I would still suggest you try taking Colestyramine at night when you go to bed and also use raised pillows for the bile problem so you’re not laying flat.

[Ernest2 in reply to Joes_Nanny]

Many thanks - interesting ideas to consider.

Think I really need a proper diagnosis. It's going to be expensive if I do that . .