Budesonide Quick Question

Pebbledash · Post by **Pebbledash** » Fri Sep 21, 2018 1:52 pm

Jari--it's interesting that you were able to kind of self-modify the dosage and its course.

I have been on the 3x3mg for 5 days now--still "all water" diarrhea.

--How long does Budesonide usually start to take effect?

--Jari: did you take the standard course (1 month 3 x a day, 1 month x 2) and then when you got to 1 a day did you just keep going? Before you got to 1 every 5 days, did you taper to 1 every 2 days etc?

I DO think a maintenance dose would probably be the way for me to go.

Many thanks
Paul

jlbattin · Post by **jlbattin** » Fri Sep 21, 2018 1:59 pm

You know, Paul, I don't really remember..........I didn't do it for a month or whatever...........if my GI would have had his way, I would be eating normally (gluten and dairy) and taking budesonide forever..........but I tapered down whenever I began to get constipated................I believe I was on the 9 mg regimen for about 3-4 months or so before tapering down to 6 a day..................did that until I began to get constipated again and then down to 3 and then just gradually tapered it even more and more until I was able to go off of it without any relapse...........

Pebbledash · Post by **Pebbledash** » Fri Sep 21, 2018 5:49 pm

Update:

Gastro phoned me, and is happy to adjust my tapering if needed, with lengthened stages. She did suggest that Budesonide leaves the system after about one day, so queried the value of a maintenance dose once every few days--but, again, she is very flexible.

At day 5 it hasn't kicked in--first time around, it worked wonders straight off the bat. Fingers crossed it will have an effect soon.

Thanks everyone. It really helped having the information you shared, and my gastro was more than happy to listen to it.

Paul

tommyboywalker · Post by **tommyboywalker** » Fri Sep 21, 2018 6:26 pm

Paul,

Nice to know that your GI doctor is flexible with you.

It took 10 days before I had response to Budesonide and 1 month before I was in what is deemed "clinical remission"

So I wouldn't be overly concerned about not seeing response in 5 days. And there is also some evidence that it may be a little slower to work the second time around. So stay the course; we're all pulling for you!

Keep us updated!

brandy · Post by **brandy** » Fri Sep 21, 2018 7:18 pm

Hi Paul,

Second time around it can take a little longer to "kick in." I think it has something to do with the fact that budesonide is a
steroid and subsequent doses take longer to work than the first time but I can't remember the details of this phenomenon. I've only had one stint on budesonide but we've had some members who have been on 3 pill dose for a bit before it kicked in. (hopefully not your case.) Since it worked before for you I feel confident it will kick in soon.

Brandy

Post by **tex** » Fri Sep 21, 2018 8:18 pm

Paul wrote:She did suggest that Budesonide leaves the system after about one day, so queried the value of a maintenance dose once every few days--but, again, she is very flexible.

In fact, if you look at the pharmacokinetics of budesonide, it's half-life is only a few hours. However many experienced members can tell you that budesonide's lingering effect on the body is similar to most other corticosteroids. Believe it or not, we (various members) have found that budesonide seems to have some anti-inflammatory effects for maintaining remission in some patients for almost 8 weeks after they take the last capsule. In other words, you cannot be absolutely positive that you are remaining in remission without some small help from budesonide until that eight-week probation period has passed. Another way of looking at it is:

Unless there is some confounding issue, if you are going to relapse after tapering from a budesonide treatment, it will occur within eight weeks after taking the last capsule.

Brandy is right about the effectiveness of corticosteroids for repeat treatments:

Published research shows that each time someone stops and then restarts taking a corticosteroid, it becomes less effective. Eventually, after enough cycles, it becomes so ineffective that it will no longer help. The only way to defeat this characteristic is to never stop taking budesonide. But taking one capsule every few days may be enough to maintain the effectiveness — no one has determined the limits on this tactic.

Tex

carolm · Post by **carolm** » Fri Sep 21, 2018 9:54 pm

Hi Paul- just a random thought but if you are living in a part of the country where the seasonal allergies are raging, you may also benefit from taking an antihistamine like Claritin, Zyrtec or Allegra (if you aren’t already). These can help to calm any additional irritants that are keeping your inflammation up.

Carol

Pebbledash · Post by **Pebbledash** » Sat Sep 22, 2018 2:03 pm

Many thanks for the insights and support.

I admit to getting a little worried since this is day 6, and the Budesonide has not made an impact. I also might be more compromised than others as I take corticosteroids on a daily basis to treat Addison's Disease (sigh, another autoimmune condition). And it's my second time around, with a year's worth of inflammation in-between.

Tex--my hunch is similar to the points you made about Budesonide's lingering effects. MC seems such a "tentative" condition that can swing from one extreme to another at the gentlest of effects. On occasional days, out of the blue, I become totally "normal," then, as sudden as it came on, something can trigger it back to the same old routine. Whenever I visit Las Vegas my stomach seems to heal while I am there . . . seriously weird!! I can see how a maintenance dose of Budesonide could help maintain an equilibrium.

(Perhaps everyone should try the Vegas treatment . . . ).

Cheers
Paul

Pebbledash · Post by **Pebbledash** » Sat Sep 22, 2018 2:05 pm

brandy wrote:Hi Paul,

Second time around it can take a little longer to "kick in." I think it has something to do with the fact that budesonide is a
steroid and subsequent doses take longer to work than the first time but I can't remember the details of this phenomenon. I've only had one stint on budesonide but we've had some members who have been on 3 pill dose for a bit before it kicked in. (hopefully not your case.) Since it worked before for you I feel confident it will kick in soon.

Brandy

Thank you.

Post by **tex** » Sat Sep 22, 2018 3:41 pm

Paul wrote:Whenever I visit Las Vegas my stomach seems to heal while I am there . . . seriously weird!!

That's a desert location, and that's a huge clue, suggesting that Carol's hunch may be correct. Las Vegas should be free of major pollen allergies — therefore mast cell/histamine issues may be your "hidden" problem.

Tex

Pebbledash · Post by **Pebbledash** » Mon Sep 24, 2018 9:57 pm

8 days in. 8 imodium a day. Drinking Pepto Bismol like water. Stomach gurgling, diarrhea, all water--nothing solid.

I've kind of had it. I see why people turn to drugs and alcohol. I was being positive. I was trying to deal with the diagnosis of neuropathy and I falsely thought that, since Budesonide worked straight off the bat first time, it would work this time. I am trying to hold down a full time job and I crap in my pants.

I've fricking had it.

Pebbledash · Post by **Pebbledash** » Mon Sep 24, 2018 10:01 pm

People look at me and think he's privileged. They have no idea that EVERY day for the last 8 years I have lived my life around diarrhea, trying to be brave, crapping my pants and then getting on wth the job of teaching, using disgusting toilets, in pain, and now neuropathy to . . . oh and gluten free food is still a pot of gold if you find it in San Francisco. Gluten free is not politically correct so no one gives a #####. Sick of this.

carolm · Post by **carolm** » Mon Sep 24, 2018 10:54 pm

Hi Paul- I’ve been there too, just fed up and angry at the whole situation. Many times I’d think ‘I’m doing all the correct things and not seeing the results’. Feeling like I have no control is the worst!

First things first— what others think is not what matters. What matters is that you do what you need to in order to get your health back. You have enough burdens to deal with. Don’t add more to your heavy load by worrying what others think. They don’t get it and in the long run their opinions really aren’t important.

When in a major flare you may have to stop all supplements, which might feel counterintuitive but the less you have to digest, the better. There may be inactive ingredients that are problematic right now (like dairy or soy).
What does your diet consist of right now? Have you done the Enterolab testing? I apologize if I’m asking you to repeat yourself. You may have shared all that on another thread and I just didn’t see it.

When I was in my first big flare I had to give up caffeine, sugar, fiber, plus gluten, soy, dairy, eggs and pork. Even if I ate roast beef that had a little fat on it, my gut would overreact so then foods had to be low fat. Sometimes the lengths we have to go to to get out of that flare are extreme, but then this disease pushes us to the extreme too.

I hope you are able to get some rest tonight.

Kind regards,
Carol

jlbattin · Post by **jlbattin** » Tue Sep 25, 2018 6:20 am

Hey Paul,

Don't get discouraged..........we've all been there, and I'm a teacher too!

When I've been in a flare, I've gone back to the basics: a big pan of chicken and rice and that's all I eat for a few days until things calm down.

Stress is not your friend either so when you get highly stressed over things, it will upset your gut also. Try to read or listen to something calming.

But hang in there. Keep us posted.

Post by **tex** » Tue Sep 25, 2018 9:14 am

Hi Paul,

Yep, I agree with Carol and Jari, this disease can be a bit nasty at times when it's active, and most of us have had our share of "incidents". You can't let them get you down. You have to recognize that they are a part of this disease that have to be prepared for and experienced, but this phase of your life will eventually pass. MC can only control your life if you allow it.

I used to own a corn processing business. We wholesaled bulk food corn to chip and tortilla plants and bagged feed corn to feed stores all over Texas and a few locations in surrounding states. I made some of the feed store deliveries. Sometimes nausea would force me to pull over to the side of the road to either vomit or give my guts time to settle down. One time I was unloading a truck load of bagged corn on pallets at a feed store when I realized I was about to omit. I asked the guys on the dock to finish unloading for me and got down and walked over to a perimeter fence, leaned against a post and proceeded to vomit. Every time vomit spewed out one end of my body, diarrhea spewed out the other. I stood there for what seemed like an eternity puking my guts out with diarrhea running down my legs. Afterward, I went into the bathroom, threw away my underwear and cleaned up as best I could, then I went on about my business. No one ever said a word, but I can imagine what they were thinking.

This is a phase of our lives designed to teach us humility, endurance, and appreciation for the ability to reach remission. It's sometimes a challenge to our very sanity, but if we persevere, eventually we reach our goals and we realize that we are much stronger because of it.

I'm guessing from your posts that you are eating a lot of processed foods and foods prepared by someone else. Most of us find it necessary to cook all our own food from scratch in order to reach remission. While our MC is active, most of us find that way too many processed foods claimed to be GF, cause us to react anyway, even though we might be able to tolerate some of those foods when we have been in remission for a while.

Remember, MC can only control your life if you allow it.

Tex