How long to take Budesonide

[SJH]

I was taking Budesonide at 9mg for three months (with no indication of constipation). I then stepped down to 6mg for six weeks (no indication of constipation). Stepped down to 3mg and the diarrhea came back full force. Stayed at 3mg for six weeks. I had formed bowels at 9mg and 6mg but not really solid. After I quit Budesonide I tried the bile acid medication but it only made things worse with the diarrhea so stopped after ten days.

My question is if you don’t get the indication of constipation, how long should you take Budesonide? How do you know when to step down to a lower dose? Is it possible that this drug isn’t going to work for me?

I had the stool testing done and have been GF, DF, EF, SF since January 1 this year. Diet has been strict. Magnesium and Vit D are at the right levels but really no progress seen so far.

I plan on starting over with the Budesonide but don’t know how long to stay at each dose without some sign of constipation.

Very discouraging to do everything right and still make no progress.

Any suggestions would be greatly appreciated.

[Gabes-Apg]

If you are having D whilst taking 3mg, there is something in your food/drink that you are reacting to, OR something in your environment that is causing inflammation.

- are you sharing kitchen with others that are having gluten?
- did you get new cookware? Utensils when you started GF/DF
- are you using pure items, like tea, coffee, salt etc? Coffee blends, tea blends can have contaminates
- are you low fibre, low sugar ??
- are you avoiding spices/herbs etc?

Do you have contact with enviro irritants? Pollution, mold, chemicals???

[tex]

Sorry for the redundancy — I didn't realize that Gabes was posting as I was writing. I'm a slow writer. We seem to have said pretty much the same things.

That's a frustrating situation. If you're sure that your diet is not somehow being cross-contaminated, consider these possibilities:

1. One of the listed side effects of budesonide is diarrhea (but the fact that your symptoms get worse as you lower the dose probably rules out that possibility).

2. Look at all of your medications and compare them with a list of drugs known to cause MC for some patients

3. Is there any chance your diet contains too much fiber or sugar, especially fructose (fruit sugar)?

4. Are you using any artificial sweeteners either directly or in processed foods or drugs?

5. Are any of the foods you are eating considered to be in the high-histamine category, or do any of the food or drugs you are using cause the release of histamine?

6. Do you have allergies, or did you have them when you were young?

7. You may be one of those hyper-sensitive individuals who find it necessary to stay on a maintenance dose of budesonide in order to maintain control

This isn't necessarily a complete list, but it's all the possibilities I can think of at the moment. Maybe others can think of something that I overlooked.

Tex

[Lisa_D]

SJH,

I had the same problem -- diarrhea when I dropped down to 3mg of Entocort. My GI had me alternate 6mg one day and 3mg the next day. He says that some people need to come down more slowly. I wouldn't think you'd need to start all over again with the Entocort. You may try/ask about 6mg every other day while you investigate potential food triggers.

Best,
Lisa

[UkuleleLady]

I can't remember how long i was on it, but I felt I should have/ could have stayed on longer. The diet was what really helped, however, the budesonide sure lowered inflammation enough to give me a good baseline. I feel like the course should be longer, it is site-specific and not really a threat to the system like taking prednisone or something. And I've taken that an awful lot over the years for asthma.

Anyway, it gets better. I'm back after a hiatus here (pun intended) because I have reflux again...

It was pretty touch and go for me even after getting off entocort, but my BMs got better and better over time. It's really been a while since I had D. Thank the universe and this board, and Enterolab. Basically not much thanks go my Gastroenterologist.

[SJH]

Thank you all for your input. It's so wonderful to get the support that is offered on this board.

[Sue777]

I'm thinking you weren't kept at the higher doses long enough. I THINK (but every doctor prescribes differently) that the timing is usually 9 mg for 3 months, 6 mg. for 3 months, and 3 mg. for three months. Since you never experienced constipation, there was no reason for you to lower your dose so quickly, but that's just my opinion.

And when you get down towards the lower doses you should try weaning much more slowly, as was suggested: alternate 6 and 3 until your body feels ready to go strictly down to 3 mg.

Good luck!
Sue