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pleez answer me, it is a new question on the subject, sorry if people are bored witht the subject of cholestramine!!   now i have accepted my hair situation and all the antibiotics off-pat, after this issue its a weird and hopefully occasionally wonderful cruise towards the end, yes, no??!!!

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.

Exactly right, blackfoot! With that attiutude you will make it through the big adventure. Stay tuned for the soap opera.

Rica PPMS EDSS 6.7 at beginning - now 2. Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 50 pulses NC USA

!!!!

M.E./CFS 20 years, intermittent.  Wheldon Protocol - Started NAC and supplements Sept 2007. Doxy and Roxy full dose by Dec '07.  First Flagyl pulse January 2008.

Now then, sometimes we don't answer because we don't know... Someone might, but we are not all scientists... I can and do only speak from personal experience and I don't have any experience with Cholestyramine....

Our scientists and doctors are not always online on a daily basis so it might take a few days for them to spot your request...

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse. Zoo keeper for Ella, RRMS, At worse EDSS 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Hi - I can only share our recent experiement.

1) It really mopped the porphyrins up and quickly.  Wow response for my husband.

2) To get his porphyria attack under control, he took two packets at lunch time and two packets late a night -midnight or so.  You don't just need food - you need fat - we are using two slices of whole wheat bread drizzled generously with olive oil.  The fat is to trigger a good bile release from which Questran does it's absorption. 

You need to get all you meds down at least an hour before questran or wait 4 to 6 hours post questran before taking any more.  It's complicated and I am still trying to figure out how we are going to work this in long term.

3) Now that the porphyria attack seems under control we are experiementing with dosing and haven't settled on a new dosing plan.

Lousie and Jim have both experiementing quiet a bit with it so they might be along with experience.   Believe hdwhit and Garcia have been using Questran cousin - Welchol instead.

Daisy - Husband on CAP 5/07.  Mino, Roxy, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl

 Hi Blackfoot, Just posted the reply yesterday under Marks question Doxy and Fatigue. This is what I wrote

Submitted by Louise on Sun, 2008-03-30 17:38.

Mark, fat soluble Porphoria and endotoxinsi from die-off at the two month mark. Seems to be a recurrent complaint from those with CFSish symptoms. Bacteria having been held in suspended animation at that point seem to begin to die off that is my THEORY.

When I found Cholestyramine I thought that I found a miracle drug with the relief that it brought my mind and my energy level.

And for myself 200 mg Doxy in one dose is enough to cause die off as well as gastric distress.

I always take my doxy like a sandwich, right in the middle of my meal and always take it twice a day with breakfast and supper. Been doing this since last June.

Same with the roxi I take it twice a day, I can take Roxit on an empty stomach before breakfast and mid-afternoon.

When I need to take the cholestyramine at bedtime, I take it in a 6 - 8 oz glass of water through a straw before it starts to thicken, then follow with another glass of water to help prevent constipation.

Also my dose varies from one to two envelopes in that first glass of water, second glass is always clear water.  Depending on how I down and out I feel I titrate the amount.   I have been off if it for about a month and am still mostly clear headed.

I am looking forward to another pulse in another week or so after I return from another short trip.

I seem to be one of those who gets more energy after my Tini Pulses.  Don't know if the Cholestyrimine has anything to do with that observation. So just wanted to add that perspective to the general dread that most have of pulsing.  

Once you get your level down you may well be able to get by with less.  Daisy's husband is on an agressive protocol and producing lots of by products.  So he can well use it more frequently.   Taking it at bedtime, like many take charcoal keeps it away from most of your meds.  

Take a look at the porphoria list of sx in the handbook.  It is amazing what as has been associated with it.  Many of the symptoms that folks find very concerning. 

Let us know how you do with it.  I will be sure to add some comments with my next pulse and round of Cholestyramine.

I have written about this a number of times.  You might click on my name and then click on track posts and have a look see.  I started back in November with the Cholestyramine.  Wish I had know more about it earlier it would have been really helpful during the summer when I was REALLY FOGGY.

Best Regards,

Louise

CFS/ME.

CPnPositive.BbPositive.WheldonCAPbegan6/24/07.

NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. 

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

I looked for it at a health store & saw the price & turned tail & ran out the door, lol

I am not allergic to shellfish & have been having good success with Chitosan (usually 8 caps a day)  So, along with 5 gms of C a day & additional Emergen C if I get behind the toxin 8 ball; I have been keeping reactions down to a dull roar.  It was my aim to try to be ahead of it instead of panicing trying to clean up after I am experiencing the Troll Queen.

CFIDS/ME 25yrs, FMS, IBS, EBV, Cpn, (insomnia - melatonin, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NAC 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

I have a cholestyramine\questran question and found this topic from several months back.  Thanks to everyone who posted on this subject.  However, I'm still not too sure and what I'm wondering which is about dosing and frequency of dosing.

I read above that some people take it once before bedtime at night while others take it then and again in the middle of the day, and still others take it in the middle of the night.  So, what are the guidlines for taking it?  Is it as hit and miss as taking charcoal, which I've only once ever found helpful and seemed to be very timing dependent?

Also, much of the conversations I've read talk about using cholestyramine/questran to alleviate porphyrins.  Is it equally and/or more effective at doing the same with endotoxins released when pulsing?  I'm particularly interested in that as this past pulse really gave me a big hit, one I want to manage the next time and mitigate as much as possible.

Thanks all for your feedback!

John, for some people a secondary effect of cholestyramine can be constipation.  If it is at all an issue in your system I would suggest a stool softener, ask your doctor to suggest something appropriate for you.  And be sure to drink extra water periodically during the day to keep you body from concentrating the fecal material at the end of the colon, this is the reason for a good deal of chronic constipation in those who limit fluid intake or are just not thursty particularly if gastric and bowel motility are at all an issue.

Louise 

PS In my signature is my current Cholestyramine dosage each packet is 4 Gms.   If you get the can I believe there is a measuring scoop.  I get the packets.

John- The best way seems to be taking it with some bile stimulant like butter on crackers. If you know the timing of when you seem to get hit with symptoms after taking a dose of medication, you can try working it in just before that time. Otherwise just work with taking it at the times you can reasonably schedule it, and count on the consistent usage to bring down the overall level of stored and recycled fat soluble porphryins and endotoxins. Dr. Stratton is pretty clear that these are very difficult to get rid of without consistent efforts over time as the evidense of high levels of recirculation is quite good.

Big ditto on the constipation. It is something to really be mindful of. I have been quite unwell today from it. I'd taken a triple whammy from the Charcoal, Cholestyramine and Tramadol -- all of which can bung you up. I was in the worst pain so I will do what it takes to avoid this! I already drink 1.5l – 2l of water a day so drinking adequate water is not enough, additional measures are necessary going forward and I am removing the Charcoal.

I love what Cholestyramine does for us. My husband also gets excellent benefits from it. We take ours at 2pm every day. We have our supplements at 8:30am with breakfast, nothing with lunch, Cholestyramine at 2pm and the ABX+more supplements with supper. It works well.

We take the Cholestyramine with 4 buttered saltines: we eat 2 crackers, then drink the Cholestyramine with a straw, then eat the last 2 crackers. I like the straw because I can suck it back without the stuff getting all over my mouth or on my teeth. It can do nasty stuff to your teeth.

Louise gave me the tip for the straw and Jim suggested that I whip it up with one of those hand held frothers. Both of these really make a difference. Thanks to both.

Excellent stuff!

Above form of Stool softener, Docusate Sodium, 100mg USP, is available OTC, over the counter.  There is also a combination form that includes a mild laxative if needed as well.  Go to your local store and browse the shelves these are often available as house brands at drug and food stores.

Louise, can you take these as long as you are on the Cholestyramine?  I know that long-term is not good but since I am creating the situation with drugs would it be okay then to aleviate it with drugs too? 

The non combination form has no laxative to get dependent on.  The Brand name is Colace and it has been around since the 70's or 80's at least.  My understanding is that it retains moisture in the stools so that constipation is less likely.  Then some folks have some problems with GI motility and need a little boost there are lots of laxative products out there.  And yes the high powered ones people get dependent on for various legitimate and less that necessary reasons.  Some folks choose stool bulkers such as metamucil like generics.  To improve motility by increasing the bulk.  If you are eating roughage such as salads not likely necessary and really another get it down there somehow item.

These days I am using modern pharmacology in moderation after decades of avoidance.

IMHO stool softeners are less likely to cause long term dependency than laxatives but if you got to go and cannot perhaps a better short term solution is a fleet-like (house brand) enema.  Inexpensive and a few in the closet for occasional use might bring peace of mind.

And if you have neuro based motility issues then gentle laxatives with softener would be my personal choice.

I think I could write but don't want to go on and on about basic bodily functions unless you want MHO for any more questions.

 Louise

Thanks Louise.  This is good info.  I love the Cholestyramine and if I can get rid of the one side effect I'm all in!

Twinlab magnesium caps are 400 mg. of 100% magnesium oxide with other ingredients: gelatin, potato starch, magnesium silicate, purified water, medium chain triglycerides, croscarmellose sodium, magnesium aspartate, silica. I have used these for several years when I get constipated. It only takes a couple caps a day and I am relieved. 

Slainte! MM 

I was taking Cholestyramine.  Now I am on Optifast and not eating any food.  Without food it sounds like it would not be worth taking.  However there is still color to even my liquid stools indicating that I am producing bile.  So the question is whether to take it or not under these conditions.

Would appreciate some guidance.

DD

Well I would ask why are you taking it?   For cholesterol lowering effect or for porphyrins and fatty endotoxins excretion that are contained in the bile? 

I will not ask you about the optifast none of my business of course..

But with that treatment or therapy, you are moving into the rhelm of specificity of situation, from my perspective and this question is bigger than it seems.  So for you it is not a simple one in MHO.

Do be careful using both charcoal and chole could leed some folks to huge constipation problems, particulary with low roughage intake or lack of mobility which can lead to lack of intesinal motility.  Do you use a stool bulker like metamucil-like substance? 

For me it is one or the other, charcoal or cholesty just my humble opinion of course.

Louise  

RESINCOLESTIRAMINA

Cholestyramine

RESINCOLESTIRAMINA POWDER

RESINCOLESTIRAMINA is an insoluble salt of an anionic exchange resin, with a high capacity for absorption to bile acids in the intestine.

Bile acids are produced in the liver by cholesterol oxidation.  Due to this fact, when they are absorbed, it becomes necessary to synthesis them from the body's cholesterol thereby lowering cholesterol levels in the body.

Important to Note, This explanation above is for the original use of this substance as a cholesterol-lowering agent for which it was designed.

To be used to lower porphrins and fatty endotoxin substances from the body demands that the Cholestyramine must be taken away from nutritious meals and supplements which are needed for healing, so as not to absorb wanted substances. To lower porphorins and fatty endotoxins they need to be targeted several hours away from and before food and supplements to separate this action and subsequently for elimination from the body through the intestines and fecal elimination.

In order to increase the drug's efficacy, a low-cholesterol diet should be given. 

Note this is not something that is necessary for use as a porphorin lowering agent.

Due to the high absorption capacity of RESINCOLESTIRAMINA for bile acids, it is used in the treatment of puritus secondary to obstructive jaundice, both entero and extra hepatic.

COMPOSITION

Composition per sachet:

Cholestyramine USP (anhydrous powder)    4Gm

Flavouring vehicle q.s.  (Quantity sufficient)

INDICATIONS

RESINCOLESTIRAMINA is indicated in the treatment and reduction of plasma cholesterol levels and the treatment of puritus secondary to biliary stasis.  Also in the treatment of intractable diarrhea.

CONTRAINDICATIONS

History of hypersensitivity to anionic exchange resins.  Complete billiary obstruction.  Its use in pregnant mothers is not recommended.

SIDE-EFFECTS

The most common is constipation, which is usually mild and can be controlled, if necessary by means of laxatives.

Less frequent are other intestinal disorders such as anorexia, flatulence or diarrhoea, nausea or epigastric burning.

As the drug is an anionic exchange resin, its use in long-term treatment could give rise to hypochloraemic acidosis,  particularly in children or underweight patients.  Episodes of bleeding (due to interference with Vitamin K absorption), skin rash or osteoporosis are very occasionally observed.

Note - These effects are more likely occurrences when agent is used as it was originally intended, as a Cholesterol lowering agent, to be taken 4 times a day or 12 - 16 Gm per day, for that use. 

Use for porphorin and endtoxin lowering is suggested to be only once a day, perhaps twice, and 4 - 8 Gm per day. ¼ to ½ the daily dosage.  Also after initial lowering of symptoms, intermittent use as needed for periods of 5 - 10 days in the 4 to 8Gm amount seems to keep levels lowered.

INCOMPATIBILITIES

Due to the intestinal absorption properties of RESINCOLESTIRAMINA, no drugs should be given orally for one hour before and 4 hours after ingestion of the resin.

DRUG INTERACTIONS

RESINCOLESTIRAMINA may delay or reduce the absorption of concomitant oral medications such as: phenylbutazone, warfarin, chlorothiazide (acidic) or propranolol (basic), as well as tetracycline, penicillin G, Phenobarbital, thyroid and thyroxine preparations, and digitalis. The discontinuance of RESINCOLESTIRAMINA, could pose a hazard to health if a potentially toxic drug such as digitalis has been titrated to a maintenance level while the patient was taking RESINCOLESTIRAMINA.

RESINCOLESTIRAMINA may prevent absorption to fat soluble vitamins such as A, D, and K.  When RESINCOLESTIRAMINA is given for long periods of time, concomitant supplementation owith water-soluble  or parenteral form of vitamins A and D should be considered.

DOSAGE  Note: (this is the recommended amount for use as cholesterol lowering agent Please read this entire document before use).

Adults: 12 -16G which is equivalent to one sachet (4G) three or four times daily.

Children: 4 - 8G which is equivalent to one sachet (4G) one or two times daily.

It is recommended that RESINCOLESTIRAMINA be dissolved in ½ glass of water or juice.

PRECAUTIONS

Due to the possibility of a delay in absorption of lipsoluble vitamins, it is advisable in long-term treatment to add a Vitamin K, A and D supplement in liquid form.

In patients with constipation, lower the normal doses should be given to avoid aggravating the condition.

Medicines shold be kept out of the reach of children.

INTOXICATION AND RELATED TREATMENT

As the product is not absorbed systemically, poisoning due to the drug cannot be foreseen.

PRESENTATION

Package with 50 sachets of 4G.

STORAGE

To be stored at room temperature  (below 30C or 86F).

LABORATORIEOS RUBIO, S.A.

Barcelona (Spain)

I use it for porphyria/endotoxin from the CPn CAP.  My cholesterol isn't high.   Thanks for the warning.  I do use charcoal too. Actually I've never had a day with fewer than 6 stools in my life.

I use the other moppers too and the Pyruvate 1 hour before ATB's, so I'm not sure if I'll get much help from the Choly since I'm not taking in any bile stimulaors in my diet.  Yet my pulses still bring increased symptoms. 

Paula is now taking 2 sachets of Chole twice per day and it looks like fingers crossed, she is starting to get some relief - I will write a blog next weekend after she has been on the full dose for 7 days.

One question I have - She is taking it at the recommended times away from the abx and supplements.  She takes it with her normal meal, ensuring there is some fat in there.  By re-reading the above, I am getting a bit confused - Could the chole be sucking some of the nutrients from her food when she takes it like this?

Thanks for your advice in advance.

Mark

Paula is now taking 2 sachets of Chole twice per day and it looks like fingers crossed, she is starting to get some relief - I will write a blog next weekend after she has been on the full dose for 7 days.

One question I have - She is taking it at the recommended times away from the abx and supplements.  She takes it with her normal meal, ensuring there is some fat in there.  By re-reading the above, I am getting a bit confused - Could the chole be sucking some of the nutrients from her food when she takes it like this?

Thanks for your advice in advance.

Mark

Mark, Thanks ever so much for finding and using this older post.  It is a gem and I had lost track of it in the update.   Lots of good perspectives from some who have used it.  And mostly much of my personally written suggestions and cautions from my vantage point. I am book marking it now so that I can direct folks to this thread in the future.

Now for a my response to you.

What is wonderful is that she has been able now to tolerate it. 

Taking it with a normal meal is was the use intended when it was developed to be used for cholesterol lowering effect.   So, this is not what I am after when using if for fat soluable porphorins and fatty endotoxins.  One really does need the effect of the bile to digest food and absorb them.  So I use it away from meals. 

For myself personally I have not taken it twice a day in general. Only once in 24 hr period, generally within 1/2 hour of bedtime after a fat containing snack.  Sometimes I have a piece of cheese or butter on a rice cake.   Fat is more stimulating to the gall bladder and causes more release of bile flow.  However is a person cannot take any animal fat then an oil would be the best thing, so olive oil on a rice cake just might do it to stimulate the bile flow.   initially, I used a small handful of potatoe chips (organic natural but junk food none the less)

I a on the thinner side, my weight is about 128 lbs.   Paula could potentially do well to use it twice a day, to get a stronger effect more quickly, at least until she is more able.         If you could combine some of her supplements there might be a second period in the day to add a second dose away from her main meals.

You might even consider temporarily reducing some of the supplements for a brief time to get the chole second dose in away from food.  She has been so faithful and regular in her supplements over the past year that some irregularity at the cost of lowering porphyrins might be of value if she can not possibly take more of them at one time.

If you can figure out how to get twice a day dosing in and even extend it for several weeks once or twice a day, I am so hoping that she will begin to be able to sit some and stand some  etc for starters, as well as cognitive improvements.    I look forward in anticipation of Paula being able to post to us directly .

Looking forward to your update next week.  Louise

Thanks Louise.  Just gave Paula your comments.  We plan to just take a small amount of rice bread with olive oil spread again to take with the Chole.

Paula asks how long should you wait after the Chole before having a main meal?  Would 2 hours be enough do do think?

Thanks,

Mark

Reread the comment by Daisy earlier in this thread they used Questran (cholestyramine) several times a day for a while, she explains the spacing precautions very well as they used it.  She reported that it was very helpful as I recall.  Louise

Bumping up. Very good thread answering questions on cholestyramine plus help me track it for in the future.   MM

Jim, Please consider relocating this thread for ease of reference and please let me know if you do so that I can reference it in responses that that I make in topic threads.   Thanks for your consideration. Louise

I've not had a constipation problem so far but I chase my morning dose down with a breakfast containing 8-12 grams of fiber. Then I try to get at least a few grams of fiber in each of my other meals. Lots of high fiber foods should keep you moving.I tried to chase it down with Metimucel once but got horrible gas. Not going to do that again. :(