Budesonide Quick Question

[Kilt]

Silly question, perhaps . . . is it common (or, at least, not unusual) to have the odd "bad" day when on Budesonide?

I'm on my last few days (unless I decide to prolong the taper) of 3 per day, but this last week I have had the odd day in which I returned to the D.

Paul,

If I recall correctly, you're on your second round of budesonide after relapsing and it took at least 10 days before the budesonide took effect this time. Now you've had a watery diarrhea day. In my opinion, you should stay the budesonide at 9 mg per day for at least eight weeks and then begin a long, slow taper for six months to a year.

That's not just my opinion. Here is the official American Gastroenterological Association Institute Guideline on the Medical Management of Microscopic Colitis:

http://repositorio.uchile.cl/bitstream/ ... sequence=1

Recommendation 1, for induction, is an eight week course of budesonide at 9 mg per day. Recommendation 9, for maintenance patients with a recurrence of symptoms, is as follows: "Although maintenance dosing of budesonide may start at 6 mg, in clinical practice, it is commonly tapered to the lowest effective dose. Cessation of maintenance therapy can be considered after 6 to 12 months."

I am currently on the following budesonide taper schedule, approved by my GI doctor:

- 8 weeks, 3 pills per day
- 8 weeks, 2 pills per day (I'm in the eigth week of this)
- 8 weeks, alternating 2 and 1 pills per day
- 8 weeks, 1 pill per day
- 8 weeks, 1 pill every other day
- after those 40 weeks, listen to my body and try to taper completely off

I had one watery diarrhea day during the 3 pill per day period. I associated it with some possible old and spoiled deli turkey I had eaten the previous day, but I don't really know. In general, I have formed bowel movements (Bristol #4's), but there are random swings toward looseness and occasionally mild constipation, possibly due to diet, unknown microbes, weather, who knows. I seem to be able to eat anything, but I'm staying strictly low fiber, no caffeine, and low lactose and gluten.

I'm sticking with this long, slow taper come hell or high water, and I'm hoping things work out well at the end. I won't consider myself in remission until six successful months after the taper, especially since it's during that time I'll experiment more with diet. So it will be a long time before I can claim victory or failure with budesonide.

[Pebbledash]

Mamabeabs--

Thank you for your kind words and support! I am presently thinking of extended each course.

Kilt--

Your post blew my mind.

First, because I am "gobsmacked" that you are so familiar (and accurate) with the details of my case. Second, because your advice about lengthening each course is something that has been playing on my mind for some time . . . not that I want to, but because, reading around (particularly this forum) seems to incrementally reinforce the absolute need for sufficient time and patience (particularly when inflammation that has been so evidently rampant as my own). The statistics of those who relapse within months of stopping treatment speaks to the stubbornness of this condition, a feature that has (IMHO) been historically and repeatedly underplayed by the medical lore.

Third, because the details of your own case sound so candid and, in many ways, reflect the reality of my own unpredictable vacillations.

Fourth, because you cite a credible authority.

Your insights are much appreciated. I intend, I think, to lengthen my course.

Best
Paul

[MamaBeabs]

Hi Pebbledash,
I read the same post and someone was very intentional and caring who posted it, but I am only 11 days into my first course, so it wasn't me. I did print out the info from the source listed for myself. Better and best days for you!

[jlbattin]

You can have lots of odd bad days while on Budesonide if you eat something you shouldn't or stress over things................stress was my worst enemy!

[Sue777]

I'm only speaking from my personal experience (of many times on and off Budesonide) but if I was still having occasional urgent, watery D I would assume I wasn't ready to taper yet. The only time I start tapering is when I'm actually constipated. Unfortunately my remissions, regardless of how slowly I taper, only last 4-6 weeks. Budesonide works like a charm when I'm on it, even when I only take one every other day, but coming completely off never works.

Since my doc is dead-set against me staying on it for life, we're trying 6MP (mercaptopurine). Good luck to you, and listen to your body.
Sue

[Pebbledash]

You can have lots of odd bad days while on Budesonide if you eat something you shouldn't or stress over things................stress was my worst enemy!

Thanks jlbattin. Reassuring to know that this happens.

Now stress . . . I guess it can't be avoided, but I feel it in my stomach . . . need to manage it better, for sure.

Paul

[Pebbledash]

I'm only speaking from my personal experience (of many times on and off Budesonide) but if I was still having occasional urgent, watery D I would assume I wasn't ready to taper yet. The only time I start tapering is when I'm actually constipated. Unfortunately my remissions, regardless of how slowly I taper, only last 4-6 weeks. Budesonide works like a charm when I'm on it, even when I only take one every other day, but coming completely off never works.

Since my doc is dead-set against me staying on it for life, we're trying 6MP (mercaptopurine). Good luck to you, and listen to your body.
Sue

This time around, I don't see constipation as figuring into things. However, for the last month, beside the odd days of D, I've been thankfully "normal." Have to see how it goes these next few days, but I am going to extend the 9mg dose for 8 weeks in total, I think.

Paul

[Pebbledash]

Just thought I would update.

I am now alternating 1 and 2 Budesonide per day. It's been about 4 months since I resumed treatment. Things are generally steady, to the degree that I think of my bathroom visits far less. There are exceptions, of course--today I had some D, and I put this down to possibly imbibing some milk, which I had cut out of my diet. But, overall, things have calmed down a lot, Thank God.

I'll taper down to 1 per day if all goes to plan in about 6 weeks.

My polyneuropathy impacts me more presently than the MC. It scares me. I wish there were a forum half as good as this one for peripheral neuropathy, I really do. But there is nothing remotely like this. Massive credit to those who keep this board running and all the hours they put in to help others--truly incredible, and a labor of love.

I have to say again, if it wasn't for this discussion board I would have lost my way. It was here that I got the moral support I needed, but, perhaps even more importantly, the incredible advice and insights that allowed me to go back to my consultant and navigate a more sustained course of Budesonide. It's not at all good that there are folks out there unaware that for many Budesonide treatment needs more time and patience, along with dietary changes.

Cheers
Paul

[tommyboywalker]

Just thought I would update.

I am now alternating 1 and 2 Budesonide per day. It's been about 4 months since I resumed treatment. Things are generally steady, to the degree that I think of my bathroom visits far less. There are exceptions, of course--today I had some D, and I put this down to possibly imbibing some milk, which I had cut out of my diet. But, overall, things have calmed down a lot, Thank God.

I'll taper down to 1 per day if all goes to plan in about 6 weeks.

My polyneuropathy impacts me more presently than the MC. It scares me. I wish there were a forum half as good as this one for peripheral neuropathy, I really do. But there is nothing remotely like this. Massive credit to those who keep this board running and all the hours they put in to help others--truly incredible, and a labor of love.

I have to say again, if it wasn't for this discussion board I would have lost my way. It was here that I got the moral support I needed, but, perhaps even more importantly, the incredible advice and insights that allowed me to go back to my consultant and navigate a more sustained course of Budesonide. It's not at all good that there are folks out there unaware that for many Budesonide treatment needs more time and patience, along with dietary changes.

Cheers
Paul

Hey Paul,

So great to read this update! Very happy for you! Yup, the importance of this forum for both moral support and information on best practices, diet, doctors, and the rest cannot be overstated. I so agree with you on those points.

So along with your update, I may as well post mine. I am doing very well! After a very slow taper, I've been off budesonide now since early November and am managing well with just the gluten free / dairy free dietary restrictions. I can eat most other things but do get into a little trouble on a day with too much fat or sugar in my diet, but it is only for a day or so, isn't severe and is easily remedied with a little Imodium.

But the upside to the new diet is that I have been able to keep my weight in check! I was at 215 pounds prior to MC, then went all the day down to 180 pounds, but now that I am feeling much better I have put some of the weight back on and am staying right in the 195 pound range which is a very good weight for me. My doctor agrees as before all of this, I was pre-diabetic and my cholesterol was high enough for me to start on a statin. Latest bloodwork showed glucose and cholesterol numbers back into the normal range!

I am still working hard to manage my CRPS (Complex Regional Pain Syndrome) and some polyneuropathy as well, so I understand that challenge Paul and wish you the best with it. So many of us on this forum have multiple health issues so this group really "gets it" when some of the others in our lives may not or at least not as much as this forum family.

Thanks for checking in, we gotta stay the course man! I think you are indeed on the right path with your Budesonide treatment. And a tremendous thank you to Tex, all of the volunteers on this forum, everybody who posts on this forum and als lets not forget the Microscopic Colitis Foundation and the good work they are doing.

Please keep us posted Paul, (and others too; it's great to read updates) and as you always end your posts with......"Cheers"

[tex]

Hi Paul,

Great update. Slow and steady wins the race (against MC). I don't recall if I mentioned it to you (I may have), but I was diagnosed with peripheral neuropathy 10 years ago. I took Metanx (which is a prescription-only combination of a specific ratio of the active forms of vitamins B-12, B-9, and B-6 for 6 or 7 years. It helped immensely, restoring my reflexes and partial feeling in my lower legs and feet. After Brandy pointed out that Thorne Laboratories offers a product called Methyl-Guard Plus (which is a generic equivalent at a much lower cost), I switched to it. Many others on this board also take it because it also improves cognizance and memory, and helps to resolve the brain fog caused by MC. Thorne also offers a product called Methyl-Guard, but it's only half as potent as Methyl-Guard Plus. Methyl-Guard Plus is even available on Amazon, no prescription needed.

Tex

[tex]

tommyboywalker,

The only thing better than a great update is two great updates in a row. It's good to hear that you've been successful in weaning off budesonide and you're doing well.

Tex

[brandy]

Men, men, men, Great Updates!

Paul, great that you step down is working out!

Tommy, great that you are off of budesonide! Congrats on the weight loss! Tommy, the longer you are in healing mode the
better you will feel! Almost all of the male trainers at my gym eat GF and DF. I think most of them follow paleo. It
is very machismo.

I'm age 58. I can tell you you will feel better and better! When I am around my peers everyone seems to have aches and
pains. None for me since I am GF and DF

Google the following: forum, neuropathy, Metanx and read up on Metanx for neuropathy. You will find some threads on it.
Then look at the top of our forum and there is a thread on Metanx. You may have to click around to find it. It will be a sticky
at the top of one of the ten fields. Then take a look at the formula for Thorne Methyl Guard Plus on Smile.Amazon.
There is some discussion about Metanx on the neuropathy forums because I stumbled there after Tex started talking
about Metanx for neuropathy and brain fog. (I had the brain fog and not the neuropathy.)

Again, you men are doing great! Keep us updated!

[brandy]

https://perskyfarms.com/phpBB2/viewtopic.php?t=18500

This is our Metanx thread. There is some discussion about Metanx about in neuropathy forums (some discussion, not a lot)

[carolm]

Thank you Paul and Tommy for the updates! It does my heart good to hear about other’s progress and success. As you continue to heal you’ll see improvement in other areas and you’ll have the energy to turn your focus toward other health issues to tackle next. It’s a journey.

Thanks for sharing-

Cheers to you both!
Carol

[Pebbledash]

Hi to you all!

Tommyboy--I'm so pleased at the progress you have made! You have been an inspiration--in fact, I think you were more-or-less at my current stage of treatment when you first advised me about taking the "longer course." I'm indebted to the advice you (and others) gave! Not sure whether I'll make it completely off the Budesonide, but I'm now happy to take one week at a time.

Tex--I just wish there was someone of your caliber running a PN discussion board (if you ever need a second "career" . . . ! Just kidding).

Brandy and Carol--lovely to hear from you both again. I am taking the Methyl Guard Plus. My main symptoms are paresthesia and twitching, though I worry about the future as PN is so unpredictable.

I've been depressed. Lost both parents, working in high pressure job, abroad, lacking networks--so a forum like this is remarkable in its reach. I am trying to lay off the alcohol--I've over-indulged; though my PN is idiopathic, I know alcohol is not good at all, so hoping I can bring a more positive attitude, as long as my health-issue remain "under control."

I do still get depressed. My mind can turn on a dime, particularly because the PN symptoms remind me of my condition. I led too many years being incapacitated because of MC, ridiculously so, only to find recovery brought something else. I wonder sometimes if the chronic inflammation due to MC, untreated, had other effects on my body, combined with chronic stress.

I do believe my conditions are stress related. Caring too much about what others thought, an introvert working in fairly high pressure jobs, trying to always conform. It makes me feel sad.

But, hey, you can see what a twitching eye does for me--it sets me off! Didn't mean to end on a low note, so I'll just say my MC seems to be under control--and that's very good.

Love
Paul