Budesonide Not Working

[gmae]

Hi everyone,
I am new here and have been taking budesonide for about a month, almost done. It seems like things were getting at least a little better, less cramping and less stools and no watery diarrhea until this weekend all heck broke loose and I had two full days of watery diarrhea, constant. I feel so depleted and weak, headache, out of it foggy, tired...been taking care of myself the best I can. I called my doctor and I am waiting for them to get back to me about what to do, probably just going to do another month on this medicine the assistant said. I asked her if I did something wrong, or why this would happen and the assistant said that my body has gotten used to the medicine and is MC is just not managed yet. Has this happened to someone before? Do some medications better for some people, but not for others? What are different options are people have tried? This is awful I cannot keep going like this, physically or mentally. My emotional state is not and confidence in getting better is not good. Feeling rather hopeless. Help!! Thank you so much!

[tex]

Hi,

Welcome to the group. Budesonide doesn't work for everyone, but even when it does, about 80% of MC patients who respond to it relapse after the treatment is ended. And published research shows that each time budesonide is stopped and restarted it becomes less effective.

Have you changed your diet? The most effective way to control this disease (and the only way to control it in the long run) is to avoid all the foods that are causing our immune system to produce antibodies. Food sensitivities are not normally the cause of MC, but they develop after increased intestinal permeability (leaky gut) develops because of the inflammation associated with the disease. And once those food sensitivities develop, they perpetuate the inflammation, thereby perpetuating the disease.

Fortunately, we are able to put the disease into remission, and keep it there, by removing all traces of the foods to which our immune system reacts from our diet. We all react to gluten (despite our doctors trying to tell us that we are not gluten sensitive), and most of us react to casein (the primary protein in all dairy foods), soy, and chicken eggs.

I hope this helps. Again, welcome aboard, and please feel free to ask anything.

Tex

[Pebbledash]

Hi Tex,

I hope you are well. Didn't want to start a new thread, so joined this one!

I have been using budesonide + lialda for a couple of years but the impact is wearing off. Cholestyramine can help but it is too difficult for me to take regularly as it interferes with meds I take for other conditions.

My question: once the budesonide and lialda have proved less than successful, what would normally be regarded as the next in line treatment? I am in the process of conferring with my GI and would like to be equipped with knowledge of any other possible treatments (or any new treatments).

Much obliged.

Cheers
Paul

[tex]

Hello Paul,

I'm doing well, so far, thanks.The next step for most gastroenterologists would probably be to prescribe a biologic, but similar to budesonide and many other medications, even if it works well, it will most likely either lose efficacy, or your immune system will develop an allergy to it after a few years, although that isn't chiseled in stone, and some of us have much better luck with this class of medications, than others. If/when a biologic treatment has to be ended, these days, there are more than a few other biologic medications available, so that you won't be out of options. New biologics labeled for treating IBDs seem to receive FDA approval rather often, these days.

Before I wrote off cholestyramine, though, if I were in that situation, I would ask my doctor for a blood test to determine whether or not I have BAM. If BAM is indeed the problem, then colestyramine is probably your best option for a (hopefully) permanent solution, and you might even be able to do without the treatment, eventually. With some ingenuity, you should be able to work out a schedule that allows you to take it without interfering with your current medications. And it might be helpful to review the details regarding treating BAM described in the newsletter that can be read or downloaded at the following link:

https://www.microscopiccolitisfoundatio ... mplate.pdf

I hope some of this is helpful.

Tex

[Pebbledash]

Thanks as always, Tex. I'll be sure to look up the info you supplied on BAM in a mo. I do think I have an element of BAM because, from past usage of cholestyramine, it can prove quite useful, particularly if I take it within 30 mins or so of eating my main meal(s), as advised by a fellow forummer.

Do you happen to know how literal one should take the advice of not taking other meds 4-6 hours after taking cholestyramine?

My problem is that I take essential meds (plus some non-essential supplements) and I have to take these meds twice a day. Given that 4-6 hours impact represents more-or-less half a day, cholestyramine potentially really screws up my regular med regime.

However, is there any more nuanced info on this 4-6 hours? Does it apply equally to all meds? Could I cheat and expect a med to absorb normally 3 hours after cholestyramine? This is info I've never been able to get hold of.

Cheers
Paul

EDIT: I've just downloaded your pdf. My apologies if you tackle these questions in your pamphlet. Ill go ahead and read it over the next day or so and then get back if I have a question not answered.
I also agree--if cholest works then I should somehow prioritize it as it might suffice to turn me around and then I can go off it for some duration.
Thanks so much.

[tex]

Paul,

As you've probably already seen in the newsletter article by now, you can take meds 1 hour before taking cholestyramine. And if you cheat a little on the other side, and take a med 3 hours after taking cholestyramine, it probably won't have an unacceptable effect on the normal absorption of the medication. It may slightly affect the efficacy of the medication, but according to Laine (HockeyMom), the local cholestyramine expert here, it shouldn't have a major effect, at least in most cases. That may depend upon the particular med, and how fast it's normally absorbed into your system (and where it's absorbed in your digestive system).

Tex

[Pebbledash]

Paul,

As you've probably already seen in the newsletter article by now, you can take meds 1 hour before taking cholestyramine. And if you cheat a little on the other side, and take a med 3 hours after taking cholestyramine, it probably won't have an unacceptable effect on the normal absorption of the medication. It may slightly affect the efficacy of the medication, but according to Laine (HockeyMom), the local cholestyramine expert here, it shouldn't have a major effect, at least in most cases. That may depend upon the particular med, and how fast it's normally absorbed into your system (and where it's absorbed in your digestive system).

Tex

Excellent advice. I've wondered about this for a looong time without finding any answer, so I'm really appreciative of the bank of knowledge accumulated here (thanks to Laine, too).

Back on the cholestyramine train!!

Cheers
Paul

[Pebbledash]

Hi Tex,

My GI is seemingly resistant to putting me on a biologic so I continue the same old regime--budesonide + mesalamine + cholestyramine + pepto bismol + imodium.

Here's the thing. Even if I turn this flare around, this treatment will always be tentative, anything can tip the balance. At the moment, I hardly ever travel or even leave my neighborhood. The thought of traveling abroad is a no-go which is just not fair. This is not a life. Plus, my lymphocytes are too low /neutrophils high, quite possibly the result of continued budesonide.

I have a question about biologics. I read that once you are on them, it is for life? Is this true? I was hoping that there might be a med I could go on for a while, long enough to turn me around, and then I could stop it and just continue with mesalamine.

Is it true that once started, biologics cannot be stopped? Is there any other common med I haven't tried that you know of?

Thank you.

Cheers
Paul

[tex]

Your best bet (in my opinion) for being able to use a medication to bring remission permanently, is to find the proper dose of cholestyramine, use it for however long is necessary (probably a couple of years or so), and then you may be able to wean off of it.

In practice (in other words, out in the real world), the Biologics rarely provide the performance claimed by manufacturers, researchers, and doctors. MC patients typically get mediocre to good (but rarely complete) resolution of symptoms, and the efficacy rarely lasts more than a few years before biologic medications beg[n to lose efficacy, or the body begins to build up an allergic reaction against them. The newsletter at the following link provides a better explanation regarding the use of Biologics by MC patients:

https://www.microscopiccolitisfoundatio ... fcb80f.pdf

New biologic medications are being developed right and left, these days, so it's certainly possible that a medication capable of much better performance for MC patients may be developed, but I'm not aware of any at this point.

The immune system is complex and powerful, and it almost always detects when we are trying to deceive it. and like most organs in the body it often learns how to modify its behavior in order to compensate for being manipulated. Remember the old, "It's not nice to fool mother nature." TV commercial from decades ago?

At least, that's the way I see it.

Tex

[Pebbledash]

Hi Tex,

Unfortunately, I lost my copious notes I made few years ago on alternative treatments. I understand now the dangers of biologics. But what about drugs like humira (infliximab or adalimumab)? Unlike biologics, these are not injectables.

Are these a less drastic option--ie would you need to stay on them for life?

Hopefully a full on return to my old regime for sustained time will work but I'm just wondering about future possibilities.

Apologies in advance--old notes on a computer that won't start up--brief response will be fine.

Thank you
Paul

[tex]

Hello Paul,

I'm certainly no authority on this class of medications, because they always appeared to me to be strong immune system suppressants, making them a significant infection risk. The feedback from members here who used those earlier generation medications was generally not very favorable, as I recall, and I don't remember if anyone ever posted that they had outstanding results, although a few continued to use them. MC patients don't seem to have as much luck with them as Crohn's and ulcerative colitis patients do. Your gastroenterologist may be able to provide better information. I apologize for my ignorance, but I really haven't kept up with the literature, and efficacy rates for these medications.

Tex

[Pebbledash]

Not at all, Tex. Thanks for everything.

You've given me the motivation to pursue the "cholestyramine plus" route and to keep at it meticulously for a sustained period, and I really appreciate that. I think my GI is pretty wise, and her wisdom is reinforced by yours and that of this group.

Stay well. I'll update in due course, but thus far feeling like I am on the right track.

Cheers
Paul

[tex]

Good luck to you. I hope you can find a dose that works well without a lot of hassle.

Wayne

[Pebbledash]

Update: been taking cholestyramine (2 scoops/sachets) once pd 45 mins after main meal for x3 weeks or so; am able to take other meds 3 hours after.

Massive turn around within a couple of weeks.

Cholestyramine in the game-changer for me.

Thanks Tex!

Cheers
Paul

[tex]

Great! Thanks for the update. I've been wondering how things have been going.

Tex