Budesonide Quick Question

[Pebbledash]

My doc says its okay to take with or without food.

Paul

[Janie]

Thanks Carol and Paul for your input. I will take the pills on an empty stomach. I take all 3 together after breakfast but will switch to empty stomach. I went into this awful flare after a head cold. I am gluten dairy soy egg and other sensitivities. I only been on it for 1 week and already doing better.

[Janie]

Thanks Tommyboywalker too!

[Pebbledash]

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

Thanks Tommy.

Does anyone know of any studies of daily Budesonide over a period of years (the study is for one year)? I presume there is anecdotal evidence on such use on this board--in other words, members who have taken a daily dose for a number of years? Are there other conditions (such as IBDs or other) where Budesonide is taken over periods of years?

My (limited) understanding is that doctors might be cautious of longer-term use for two reasons a) osteopenia and b) immunity issues.

Thankfully, I have had no overt side-effects or interactions that I can tell on the 3 a-day dose, but MC and Celiacs did lead to a diagnosis of mild osteopenia (and, along with the corticosteroids I take for Addisons) I should be a little cautious of that.

Cheers
Paul

[Lisa_D]

Hi Paul,

I'm currently trying Humira for my MC. I'm having moderate success with it and my understanding is that there is some data to suggest that it works for MC.

I made the decision with my GI to try Humira after a year on Entocort (I kept flaring every time I got down to 1 pill of Entocort). Humira is a strong drug with a lot of potential side effects, so it was not an easy decision. But know that Humira can be used/suggested by some GI docs for MC. I also tried Methotrexate, which as I understand is similar to Imuran. I had too many side effects from Methotrexate to stay on it, but my doc said he's seen a lot of success with it in people with MC.

My GI has always said that we need to find a "maintenance" med. He would be comfortable with me staying on 1 pill of Entocort but since that's when I start to flare again, we need to find another solution -- hence the search for other meds.

I've been sick for 1.5 years and only had a colonoscopy at my diagnosis. I would think your doc would be able to determine what's going on by your description of symptoms. I'm not really sure why a repeat colonoscopy would be needed at this stage?

I'm glad you're starting to feel better, good luck with everything!

[carolm]

Hi Lisa,
I just wanted to mention that when I was on Entocort I was able to eat eggs and as I titrated off of it, I realized I was reacting to eggs but the Entocort was masking that. I had to eliminate eggs until I was in remission. (I was already gluten, dairy and soy free while on Entocort so most of my irritants had been eliminated.)

So there may be a chance that you are still reacting to something in your diet, but it isn’t obvious until you are on the lowest dose. If you have strong reactions there may be more than one irritant that keeps the inflammation going.

Good luck and I hope you don’t have to be on Humira for long. I have no doubt that it was a tough decision to make.

Carol

[Pebbledash]

Hi Lisa--

Thanks for your insights about alternative treatments. It's valuable and reassuring to know that my gastro isn't acting alone in suggesting Humira etc. if Budesonide doesn't produce lasting results.

I am presently still on the three-per-day Budesonide, for another 2 weeks. I really hope that a maintenance dose will do it for me . . . but will have to wait and see.

Sorry that the one a day Budesonide didn't work (I think the study that Tommy linked to suggested 1.5 pills per day so maybe you could have upped the dose a little?). I hope the Humira works for you, though; keep us informed.

Cheers
Paul

[Pebbledash]

I've been sick for 1.5 years and only had a colonoscopy at my diagnosis. I would think your doc would be able to determine what's going on by your description of symptoms. I'm not really sure why a repeat colonoscopy would be needed at this stage?

Lisa--

I strongly suspect it was because my Calprotectin levels were so high (1000+); I think the gastro was taken aback at the degree of inflammation that the test revealed. This was the first Calprotectin test I had had done (though CRP was also high and had been high in the past). Thankfully, since Budesonide eventually kicked-in, I am going that route, and have put a colonoscopy on the back burner . . . I agree, I really don't want another one, and I really don't need another one.

Cheers
Paul

[Lisa_D]

Paul,
I'm glad the Budesonide is working for you! I hope your recovery goes smoothly.

Warmly,
Lisa

[Pebbledash]

Is the biggest risk associated with long-term Budesonide use loss in bone density?

[Sue777]

That's the biggest concern for me staying on it because I already have osteoporosis (probably from years of on and off Entocort). But Entocort is about the only thing that gives me a somewhat "normal" life, so I'm always torn as to what to do. Even one every other day seems to hold me ok but doc doesn't even like that amount, so he's got me on mercaptopurine (a chemo drug). I'm taking a REALLY low dose because I'm afraid of it, and I just had blood drawn to evaluate if I'm even close to a therapeutic dose of it. If I need to raise the mercaptopurine I will try that for three months (IF it doesn't make me sick in other ways) but if that doesn't work, I'm going to have to insist on risking weak bones to keep my colitis manageable.

I'm also seeing a nutritionist who's got me on a bunch of supplements to heal my auto-immune issues but that takes a long time - it's not a "quick fix" like medicines are. I'm trying to accept that this is going to be an ever-present challenge in my life.
Sue

[tex]

Paul,

Here's my take on long-term use of budesonide:

The primary cause of osteoporosis is intestinal inflammation (usually due to untreated or inadequately-treated gluten sensitivity).

The second most common cause of osteoporosis is the use of corticosteroids (especially at higher doses).

Untreated gluten sensitivity is a greater risk for osteoporosis than the less aggressive corticosteroids, such as budesonide.

In my opinion, the reason why corticosteroids cause osteoporosis is because they do not (cannot) suppress inflammation until after it is generated. They cannot prevent inflammation from being generated, therefore they are always a step behind. By comparison, the proper diet changes prevent inflammation from ever being generated in the first place. Consequently, the right diet changes do not cause osteoporosis.

If you can control your symptoms by diet alone, that's the best you can do and it will result in minimal osteoporosis problems. If you have to add a corticosteroid, You're still ahead of the game as long as you are successful in controlling the inflammation. The worst scenario would be taking a corticosteroid but not controlling the inflammation. That amounts to a double whammy as far as osteoporosis risk is concerned.

Just my opinion.

Tex

[Pebbledash]

That's the biggest concern for me staying on it because I already have osteoporosis (probably from years of on and off Entocort). But Entocort is about the only thing that gives me a somewhat "normal" life, so I'm always torn as to what to do. Even one every other day seems to hold me ok but doc doesn't even like that amount, so he's got me on mercaptopurine (a chemo drug). I'm taking a REALLY low dose because I'm afraid of it, and I just had blood drawn to evaluate if I'm even close to a therapeutic dose of it. If I need to raise the mercaptopurine I will try that for three months (IF it doesn't make me sick in other ways) but if that doesn't work, I'm going to have to insist on risking weak bones to keep my colitis manageable.

I'm also seeing a nutritionist who's got me on a bunch of supplements to heal my auto-immune issues but that takes a long time - it's not a "quick fix" like medicines are. I'm trying to accept that this is going to be an ever-present challenge in my life.
Sue

Sue, I am sorry to hear about your dilemma. I think Tex's response speaks to your situation--in short, it appears that your osteoarthritis would be even worse if the inflammation were allowed to return.

[Pebbledash]

Paul,

Here's my take on long-term use of budesonide:

The primary cause of osteoporosis is intestinal inflammation (usually due to untreated or inadequately-treated gluten sensitivity).

The second most common cause of osteoporosis is the use of corticosteroids (especially at higher doses).

Untreated gluten sensitivity is a greater risk for osteoporosis than the less aggressive corticosteroids, such as budesonide.

In my opinion, the reason why corticosteroids cause osteoporosis is because they do not (cannot) suppress inflammation until after it is generated. They cannot prevent inflammation from being generated, therefore they are always a step behind. By comparison, the proper diet changes prevent inflammation from ever being generated in the first place. Consequently, the right diet changes do not cause osteoporosis.

If you can control your symptoms by diet alone, that's the best you can do and it will result in minimal osteoporosis problems. If you have to add a corticosteroid, You're still ahead of the game as long as you are successful in controlling the inflammation. The worst scenario would be taking a corticosteroid but not controlling the inflammation. That amounts to a double whammy as far as osteoporosis risk is concerned.

Just my opinion.

Tex

Tex, thanks for writing this. It definitely helps to clarify things for me as I look to the future. I just read an article that speaks to bone density loss in Crohn's and UC, generally worse in one than the other, I think, due to the somewhat different inflammatory mechanisms.

I'm approaching my last week on 3 caps per day (6 week course). Thinking ahead, because I already have slight osteopenia due to MC, and because I already take corticosteroids daily for Addison's Disease, I am wary of long-term in-take of Budesonide.

I wonder how bad--if absolutely required--is one cap per day as a long-term dose, or every other day as Sue practices?

Cheers
Paul

[tex]

Paul and Sue,

Sue, I'm sure you remember Gloria. Paul, here's a 22 page thread by a lady (Gloria) who joined this forum on July 7, 2007 (over 11 years ago). She started the thread as she began to wean off budesonide. But she always relapsed. As far as I'm aware, she's still taking a maintenance dose of budesonide and she has no concerns about osteoporosis. The second link below leads to a thread from December 2017 in which she describes (in the last post in the thread) her budesonide/osteoporosis status. I notice that she last logged in 15 days ago, so she apparently still monitors this discussion board occasionally. If you feel a need to PM her, I'm sure she would be happy to confirm her current situation.

Weaning Off Entocort

How long can you stay on Entocort?

I believe this will allay most of your concerns about taking budesonide as a long-term treatment.

Tex