Low Dose Naltrexone LDN

[Pebbledash]

Hi all,

While waiting for LDN to arrive, inspired by Laine, I’ve experimented with cholestyramine. I still take it just once a day (to avoid impacting my other meds) but:

a) I increased the dose from 2 scoops to 3-4 scoops
b) I take directly after my main meal of the day (prior to this had taken between meals)

It’s only been two weeks, but the results have been pretty immediate and dramatic—a significant improvement in firmness, control, frequency.

I’ve reduced my daily Budesonide from 2 per day to alternating each day between 1 and 2.

Early days, but it does make one wonder if the official dosing for cholestyramine underserves it, combined with the fact for some people, like me, it’s probably seen very much as playing second fiddle and therefore used very inconsistently.

I notice that the official dosing doesn’t seem to specify when it is taken, but it does very much seem that Laine’s tip of taking it just after a meal might make a significant difference.

I’ll update in due course.

Cheers,
Paul

[Pebbledash]

Hi all! I recently started both LDN and cholestyramine and both have helped, I'm happy to say. I'd used cholestyramine years ago when I was first diagnosed and didn't have adverse effects, and honestly can't remember why I stopped. At any rate, a couple months ago I went to a functional med doc because I still wasn't achieving remission a full year after changing my diet and about 6 months of budesonide. Turns out I have mold toxicity also, and we just remediated and fixed a crack in our foundation. Stress has been through the roof and yet I am improving! I also added far infrared sauna (LOVE this) and some other supplements, some I tolerate ok and some I quit quickly. I've been able to decrease my antidepressants steadily, as well, and I'm not on the edge of tears all the time. Thanks to this board, nearly everything this new doc prescribed was familiar to me and felt safe to try. I got off the budesonide within a month and after working my way up to 2 packets of cholestyramine a day, I had some constipation within a week and have decreased back to 1 packet for now. It feels amazing to have such positive progress!

I want to thank Tex and all of you who participate and share your invaluable experience. The diet change was an absolute life-changer and I'm so grateful. Also for the comfort and reassurance that healing takes a long-ass time and I'm on the right track. For the most part, the fatigue, pain, and brain fog are the last to go, and all have improved significantly. Without a doubt, the LDN and cholestyramine have boosted my energy! I knew I was fatigued, but even I didn't know just how much. For instance, I couldn't imagine wasting the energy on styling my hair (even on a good day). Now it is laughable that it would deplete energy to spend that 10 minutes. I am also getting better at self-care in general. Not judging myself so harshly if I'm lying in bed at 10 am like I am now. Getting better is my full-time job and I was the only one criticizing that. Retraining my brain is a lifelong process but the results are so, so good! Sending you all sincere gratitude. xo

Congratulations, Karis!

One scoop of cholestyramine = 9 grams of powder. Is that the same as one of your "packets?"

Because I don't know anything about Bile Acid, I did a little bit of research and came across this journal article--it seems that bile acid mal- absorption (BAM) could be a bigger problem than acknowledged across the general population:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002596/

I want to see if I can, at some point, try the pill form of a bile sequestrant. But that's for another day.

One question I had for either Laine or Tex is whether you feel that cholestyramine helps with the actual healing process / long-term inflammation, as well as controlling symptoms?

Cheers,
Paul

[tex]

Hi Karis,

Thanks for the great update. It's good to hear that you're doing so much better.

I hope your progress continues.

Tex

[tex]

Paul,

I doubt that cholestyramine helps with healing directly, because it doesn't contain any anti-inflammatory ingredients that I'm aware of. And remember that it was originally designed to reduce cholesterol levels. But it may help healing indirectly by removing certain undesirable substances other than bile acids from the fecal stream, such as toxic byproducts. And it can help to heal hemorrhoids simply by stopping the diarrhea.

Tex

[HockeyMom]

So yes, a packet equals a scoop then! I have no idea if this actually helps you heal or not...I guess only biopsies would show that for sure....and I don’t plan on doing that again for awhile

Unfortunately my insurance at work for prescriptions changes in January ....maintenance meds (3 month refill) now goes thru Walgreens or some mail order company called Optum. My HR guy says they can’t guarantee Sandoz brand....wonderful, here we go again ! CVS has been great at getting me Sandoz..which is $10 for 3 month supply currently. Walgreens was a huge pain in my rear in the past....I really wonder if the brand matters so much for me, or just the quantity. I’m so freaky about it though (and need my job....)...I can’t experiment with it right now...Sandoz it will be, even if I have to pay for it out of pocket with GoodRx at CVS..

I’m so glad to hear y’all are seeing results!! Ya. I wonder if more people would benefit from higher dosages....

I have my life back....I honestly didn’t think that was possible 3 years ago.

Laine

[Pebbledash]

Update:

I have been taking cholestyramine once a day (3 scoops) after my main meal (around 6pm) for one month. It has had a significant impact: down to 2 bathroom visits per day (occasionally less), and pretty much normal consistency. Budesonide is down to 1 tablet 4 days a week, 2 for 3 days (alternating days), and working my way down to just one per day.

If you have had no luck with cholestyramine, you might want to try taking it just after your main meal(s) to see if it has any effect--moving the times I take it to mealtime (when bile acid is at its highest level) has made the world of difference. This is the most "normal" I have been for years.

I spoke to my gastro today and, if available on my insurance, I hope to try colesvelam, a bile sequestrant in pill form, which would be much more convenient, particularly for travel.

I found these peer reviewed articles which suggests it works just as well and perhaps better than cholestyramine:


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4493894/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3002596/

". . . another bile acid sequestrant, colesevelam, is available in tablet form, being used initially for hyperlipidaemia [Davidson et al. 1999]. There is now experience in the use of colesevelam in BAM and IBS-D [Odunsi-Shiyanbade et al. 2010; Wedlake et al. 2009b; Puleston et al. 2005]. It has a greater affinity for binding BA, which may be an advantage."

'Patients who had failed to tolerate colestyramine were able to accept colesevelam, with the majority of them continuing with colesevelam long term.'

Also, these user reviews of colesvelam for diarrhea are overwhelmingly positive:

https://www.drugs.com/comments/coleseve ... tml?page=2

Fingers crossed, I'll be able to try it.

Cheers
Paul
PS haven't forgotten about LDN but the cholestyramine seems to be working well for now.

[HockeyMom]

I looked into it years ago when it wasn’t generic...maybe I’ll look again. My problem is that I work full time and only have my income ! So experimenting on myself is rough. I work in a hospital so toilets are everywhere ( and I have had to use a patients toilet emergently a few times...). The pill form would make life easier for sure....it’s just anxiety producing to try something new when you have something that works for you

Laine

[Pebbledash]

Laine--you work in a hospital but don't get insurance cover? I'm sorry to hear that.

I'll update you if I am able to get my hands on colsevelam. The patient reviews I posted are overwhelmingly positive so I'm encouraged that it will work as well as cholestyramine which has really turned things around for me thanks to your advice.

Cheers
Paul

[HockeyMom]

Hey Paul....

I have insurance thru my job...they just want to pay for the generic version of prescription meds! The Sandoz brand is generic so right now I am good thru CVS..but when they change to a different pharmacy in January...that’s when I’ve had issues with Walgreens consistently being able to get me Sandoz cholestyramine

I might get ahold of my PCP and give the generic Welchol a try...I looked at those articles you posted and it sounds interesting.

Laine

[Pebbledash]

Brief update:

I tried colesevelam for a week--very disappointed that it did not work and I am back on cholestyramine. I tried altering the dose--between 3-6 tabs per day--and the times of the day I took them (eg., before meals, after meals etc), to no effect. To be fair, my bathroom visits didn't increase that much (2-3 per day) but my tummy was more upset than it has been for a long while (sour/sore tummy, slight cramps and slight gurgling) with a tendency towards D.

I had very high hopes indeed since a) cholestyramine and colesevelam are both bile acid sequestrants b) the published articles and patient feedback (provided above) were really really positive.

My tabs were 625 mg--the same as used in the published articles.

Cheers,
Paul

[HockeyMom]

Good to know. Switching to a pill is just more convenient...no more than that! I’m just fine with my massive dose of gritty orange drink then! Happy Holidays..I get to work this week

[tex]

Paul,

Thanks for sharing your experience with colesevelam. That may be helpful to others in the future.

I notice an issue here that seems to come up too often to be a mere coincidence — treatments that work well for many people in many situations, don't always work well for MC patients. The disease seems to affect our physiology and the pharmacodynamics of some drugs in unique ways.

But maybe I'm just being paranoid.

Tex

[Pebbledash]

Happy Holidays everyone, and thanks for everything you do, Tex

Shame the colesvelam didn't work for me, Laine--I had really high hopes. But at least the cholestyramine is there.

Cheers,
Paul

[Pebbledash]

So my LDN has arrived. But I am nervous about using it!!

Meanwhile, thanks to Laine, cholestyramine is still working just fine. And I was able to get my hands on sachets for the first time--worked fine, which is logical since they're the same product, but, still, it's great to be reassured. So now I have handy "travel size" packets that I can, theoretically, transport when I travel or when I'm not eating at home.

I wonder how many people, like me, used cholestyramine according to the way it was prescribed, found it to have relatively little impact, and stopped using it?

Laine's advice of taking it straight after a meal has proved a game-changer. If this were a new drug having this impact on me, I would have called it near-miraculous. And, most days, I am back to just 3 doses (just above the official prescription of 2 doses per day).

For those who haven't had luck with cholestyramine, or have never used it, I say try it, but make sure you are prepared to experiment with it. I take it just once a day now, straight after my main meal in the evening. I've gone from 4 or so scoops when I first started experimenting over two months ago, and, once they kicked in, I've been on 2-3 doses per day, rarely needing to go above that. My body seems to tell me each day how much I might need, sometimes titrating up a little or down a little.

I have reduced my daily budesonide from 1-2 per day to 1 every other day. Convinced that Bile Acid Malabsorption (BAM) has long been an undiagnosed part of my gut problem.

I know that cholestyramine is meant to control symptoms of BAM rather than heal inflamed colons, but, I have to say that, to me, it feels like I have undergone healing since I have been on it using my own version of "Laine's regime."

Paul

[tex]

I wonder how many people, like me, used cholestyramine according to the way it was prescribed, found it to have relatively little impact, and stopped using it?

Judging by posts over the years, I would guess, most of the people who tried it without success.

I have reduced my daily budesonide from 1-2 per day to 1 every other day. Convinced that Bile Acid Malabsorption (BAM) has long been an undiagnosed part of my gut problem.

Published research shows that 40 % of all diarrhea cases that are refractive to treatment are due to BAM.

I know that cholestyramine is meant to control symptoms of BAM rather than heal inflamed colons, but, I have to say that, to me, it feels like I have undergone healing since I have been on it using my own version of "Laine's regime."

You have to remember that your gut should be healed by now, and your inflammation level should be low, because you've been on the diet for a long time. I've noticed that most MC patients who try cholestyramine early on in their recovery treatment, are unsuccessful, because the inflammation associated with MC is causing their diarrhea. After they adhere to the diet long enough to reduce the inflammation and acquire some intestinal healing, if they're not seeing significant improvement, then BAM is probably the remaining problem.

The bottom line is, the inflammation must be controlled first, and if that's not sufficient to bring remission, then BAM needs to be addressed. At least that's personal theory. It hasn't been proven by medical research, of course, but more than a few members here have demonstrated how well that approach works.

Tex