Budesonide Quick Question

[Lisa_D]

Paul,

I'm so glad that you're feeling better and that you've found something that works for you!

Take care,
Lisa

[Pebbledash]

Hi all,

I hope you are all well. I have a question, if I may.

I have been taking one budesonide per day for a year plus, but 2 weeks ago, I titrated up to 3 per day (self-medicating). It has really helped; before I was managing, but never really "right"--bathroom visits had been down, but stools were always loose and very watery with a sense of urgency. Now my stools are firm and I feel much more in control. More normal.

I'm mindful of Covid 19, though.

At the moment, I feel "safe" because we are still in lock-down in San Francisco and people are still compliant. I'm lucky to be able to work from home, in control of my surroundings, actually in a less stressful environment than at work. It's a good time for me to experiment with my dose a little. Ideally, I would like to keep on 3 per day for a month or so to give my system as much time as it needs to really heal.

However, once shelter in place is lifted and people get more lax about social distancing etc, do you think that 3 budesonides per day will compromise my immunity, eg., when out and about shopping?

Thanks everyone.

Paul

[tex]

Hi Paul,

Here's one way to consider the issue:

Enterolab rates a Budesonide (or any similar corticosteroid) treatment in regard to the accuracy of their testing (if I understand their position correctly) as follows.

A few months of treatment with budesonide shouldn't affect the accuracy of their stool tests significantly. After about six months (for some patients) to a year (for the rest of them) of treatment, some of the tests (mostly the ones that showed only slightly positive results) will begin to show false negative results. The probability of receiving false negative results increases with the length of treatment.

Since the EnteroLab tests are ELISA tests (based on the detection of IgA antibodies in stool), this implies that these time intervals represent the points at which the patient's immune system's ability to produce IgA antibodies declines sufficiently that it (the immune system) can no longer produce a normal response. In other words, once you reach the point where you no longer qualify for the EnteroLab stool tests, your immune system has probably been suppressed sufficiently that it might begin to have trouble adequately detecting and fighting off a virus. This happens on a gradual basis, of course, and we all have different budesonide response rates, so it's impossible to predict the point at which it will become a major issue for any particular individual. And the magnitude of the exposure to Covid-19 would certainly matter also, but this offers at least some insight into the issue.

Having said that, consider also, that all corticosteroids begin to lose efficacy as time goes on. So it's possible that the long term effect on immune systems might become unpredictable. I'm not aware of any long-term research that has investigated this possibility. Most medical research is based on only a relatively short-term (a few months or less) outcome. In other words, we really don't know what might happen in the long-term.

I hope this helps.

Tex

[Pebbledash]

Thanks Tex--as always I appreciate and admire the work you put in to this forum and supporting us. I'll mull over your words. As long as lockdown is still in place, and as long as I feel there are long-term benefits to upping the dose, I'll keep with the higher titration, at least for a few weeks.

Cheers,
Paul

[jlbattin]

Hey Paul,

I was on Budesonide for a little over a year when I was first diagnosed. I tapered off of the 9 mg really quickly because it worked quickly. Just remember to go down very slowly. At the end, I was taking only 1 pill about every 3 days for awhile, and then every 4-5 for awhile until I finally quit taking it and never had a relapse at all. Have been very stable (for the most part) every since.

Good luck to you!

[Pebbledash]

Thanks Jari!

[Pebbledash]

Sorry to bother you all.

I'm having a really bad flare-up. This happened during the increase of my regular budesonide for a while from 1 to 3 per day. Honestly, I do not know why my MC is so recalcitrant. I fear the years I remained completely untreated and downplayed by my previous consultant ("MC is mild," "MC will go away on its own") has caused long-term problems. My other conditions--peripheral neuropathy, celiacs, addisons disease--possibly don't help either.

I think I might have to try prednisone or some other treatment as I can't continue in this state. Have contacted my consultant.

P

[tex]

It's possible that you have become allergic to budesonide. That seems to be happening to a number of people these days. I wonder if they're changing the formulations. Pharmaceutical companies appear to be notorious for doing that without notifiction.

Tex

[Pebbledash]

Hiya Tex,

I know you say give up supplements when trying to heal.

I take quite a lot of supplements--vit D3, magnesium, B vits, zinc, fish oils + a number connected to my peripheral neuropathy. Probably too many.

I've paused my supplement intake, but I have a question.

In the long-term, is there a "better" way to take supplements that might be helpful to one's general health? In other words, is it better to take them only a few days a week rather than everyday, at a certain time of day, with food etc if one wishes to spare their gut?

Thanks,
Paul

[tex]

Hi Paul,

FWIW, I take supplements for peripheral neuropathy, also. I've never tried any other way (other than daily), and since I've never even considered it, I know nothing (or very little) about that. I take mine right after breakfast (except for magnesium, which I divide among meals). The main thing is probably to take them at the same each day (so that you don't forget to take them) Most supplements work best when taken daily, based on the few trials I've seen published. Of course that says nothing about their effect on other issues.

A few members here use Transdermal patches for their supplements, and they claim excellent results (especially for things such as magnesium, when oral magnesium causes diarrhea). The downside is that supplementation becomes more expensive with transdermal administration, but users say that the added expense is worth it. And published trials show that they give results roughly equivalent to oral supplements.

Tex

[Pebbledash]

Thanks for your thoughts, Tex. I have a suspicion that the supplements, while having benefits, contribute to my gut problems so will lay off them for a while and see what happens,

Cheers,

Paul