Budesonide Quick Question

[Pebbledash]

Thanks Tommy and Tex. I guess I've just got to wait and see what my gastro says and what the Budesonide course brings--so far the Budesonide has steadied the ship.

Regarding peripheral neuropathy (PN): my understanding is that my B6 and B12 levels have been pretty good, though I do now take Methyl Guard Plus as cover (the supplement I think you are referring to, Tex).

My PN diagnosis was "idiopathic" (catch-all category). I take some hope from research being undertaken in this area. A group of scientists have formed a company, Winsantor, to trial the efficacy of an existing drug, pirenzepine, as a topical lotion for neuropathy; there is evidence that it can prevent nerve damage, even restore damaged nerves, but human trials have only recently started, so who knows?. Since this drug has already been licensed (for stomach ulcers, I believe, though it is no longer extant in most countries), if successful, it would expedite its use for neuropathy. One fly in the ointment is that the tests only apply to diabetic neuropathy, and there is no knowing whether the mechanisms would apply to the idiopathic kind. That said, I have communicated with the company, and they are completely mindful about extending this drug or other variants (if effective) to other types of neuropathy wherever possible.

Paul

[tex]

Notice that there are absolutely no drugs labeled for treating microscopic colitis. Therefore all drugs prescribed to treat MC are prescribed "off-label". If pirenzepine is an FDA-approved drug in this country (for any labeled use), your doc could prescribe it for your use whenever he or she wanted.

Tex

[Pebbledash]

I take the active forms of vitamins B-12, B-9, and B-6 to keep the peripheral neuropathy from getting any worse. This is the equivalent of the prescription supplement known as Metanx, which is prescribed to diabetics to treat peripheral neuropathy. I took Metanx for about 6 or 7 years, before switching to a generic non-prescription supplement It did reduce my symptoms significantly (I regained reflexes in my knees and ankles). It hasn't reversed all the damage, of course, but my peripheral neuropathy is now only a shadow of what it used to be.

Tex--are you referring to Methyl Guard Plus here as the non-prescription equivalent?

Thanks
Paul

[tex]

Yes. It's about twice as strong as the regular Methyl Guard. The Metanix was fine. But after the passage of the "affordable care act" ( ), the price of Metanx began to increase until it was priced out of my budget.

Tex

[Pebbledash]

I'm a bit unsettled because I fear my gastro might be thinking that more is going on than MC--we haven't spoke yet but he messaged to say that my calprotectin taken a week ago was very high at 1000+. He suggests that other treatments such as Imuran, inflectra, or humira might be in order, as well as another colonosopy (not keen on this right now).

He also would be happy that I continue the Budesonide.

The thing is, I am feeling so much better right now, at 3 weeks on Budesonide. I'm thinking I built up a lot of inflammation going for so long untreated so it will take time.

Part of me is scared though because my calprotectin was higher than normal for MC and my gastro seems to be thinking along different lines than I usually read about.

My symptoms have always been chronic watery diarrhea, and I have had numerous colonoscopies over the decade, so I presume if I had another IBD my symptoms would have changed.

[tex]

If you are not bleeding, I wouldn't worry about it. Most doctors mistakenly think that MC is a simple disease, and when they realize a case is not simple, or they're unable to control it with drugs, they automatically suspect some other disease (but they never find it). That has happened to many, many members here over the years. They suffer through additional tests to humor their doctor (and pad his bank account), but to date, those situations have never resulted in someone reporting that their doctor actually found something. You might possibly be the first, but so far, none of those suspicions have ever panned out.

If you're concerned, you could get tested for traces of blood in the stool (Hematochezia) — unless you have hemmorrhoids, there shouldn't be any. But hemmorrhoids are very common for MC patients. If there's blood in your stool, and you're positive you don't have any hemmorrhoids, then he's possibly right. Otherwise it's a wild goose chase.

In over 13 years, we've only had one member whose MC progressed to Crohn's, and that was probably because his vitamin D level when the MC was diagnosed was 2, and he wasn't able to correct it for a couple of years. At that level, the immune system cannot function. And yes, when the Chron's presented, he was unable to maintain remission on his current treatment program.

If you want security for long-term remission, one capsule of budesonide every two or three days works pretty well even for the most difficult cases of MC.

Tex

[Pebbledash]

Tex,

I can't tell you how much that post means to me.

I can't recall the number of endoscopies/colonoscopies I have had over the last decade, but it's probably 4. The only change (apart from my stomach villi improving from a gluten-free diet = Celiac) was that my MC diagnosis changed from one type of MC to the other (from Lymphocytic to Collagenous).

And, as I now recall, that last colonoscopy was performed for identical reasons, based on uncertainty that things could get so bad with MC, so inflamed and apparently refractory.

I think the stool blood test is a good suggestion as a better first step than a colonoscopy at this point. I would prefer to stick through a longer course of Budesonide and get my calprotectin and CRP periodically checked. At the moment, the Budesonide is working very well.

Thanks Tex--you helped steady my ship.
Paul

PS never seen any blood in stool, Thank God, nor pain; just chronic, urgent, watery diarrhea as in MC--and now that is being controlled.

[Pebbledash]

If you want security for long-term remission, one capsule of budesonide every two or three days works pretty well even for the most difficult cases of MC.Tex

I could totally live with that. Gastro seems worried about a steroid regime for some reason, but I would have thought one capsule or so every other day would be very tolerable to the body.

[tex]

There's published research supporting long-term use of reduced rates of budesonide for patients who relapse without it.

Tex

[Pebbledash]

Tex--besides Methyl Guard Plus, do you take--or have you taken--anything else for your PN?

Thanks
Paul

[tommyboywalker]

There's published research supporting long-term use of reduced rates of budesonide for patients who relapse without it.

Tex

Here is a link to one of the articles that I had bookmarked that speaks to exactly this.

https://gut.bmj.com/content/early/2014/ ... 08363.full

[tex]

Tex--besides Methyl Guard Plus, do you take--or have you taken--anything else for your PN?

Only the Metanx.

Tex

[Janie]

Is it better to take Budesonide on an empty stomach or with food? I know you can do either or but what is better if at all.

[tommyboywalker]

Is it better to take Budesonide on an empty stomach or with food? I know you can do either or but what is better if at all.

Hi Janie.

I'm pretty sure I read somewhere (can't find it right now) that it might be slightly better to take it on an empty stomach but others with far more experience hopefully will chime in. Most important though is to take it until you have a good result and then a very slow taper of it, which is what I am doing with great success.

I took it first thing in the early morning before eating. There has been some information posted somewhere within this forum about the benefits of that early AM timing.

And of course, consider the benefit of diet (gluten/dairy free and or whatever you are sensitive to) and supplements like magnesium and vitamin D to the healing process.

All the best.....

**Edited my reply when Carol prompted me to remember that it was prescribed to me to take all of the Budesonide at the same time each day. I was getting my prescriptions mixed up; I have another one for nerve pain that is spaced throughout the day. Thanks for the reminder Carol!

I elected to take my Budesonide early AM on an empty stomach, but I just checked my notes and my pharmacist said it was okay to take with or without food, but not with grapefruit juice.

[carolm]

Hi Janie,
I took 3 capsules first thing in the morning and I believe it was on an empty stomach. My doctor told me to take all 3 capsules at the same time and not to spread them out.

Carol