Budesonide therapy taper

[jmarksberry]

Hi all
I had begun the Budesonide at 9 mg once per day and the doctor allowed me to stay on the first round for over 5 weeks due to having to travel to London from the states for my daughter's wedding, then went to 2 per day for 30 days and now I am on the 1 per day for 30 days and scheduled to stop cold turkey on Christmas Day.
I have read that stopping suddenly can cause more problems and when I inquired about this he just wanted to do another colonoscopy. To be fair, he is a new doctor for me and has never performed a colonoscopy before so he feels like he needs to be sure what he is dealing with.
This medicine worked really well when I was on it 9 mg per day and did help me but in the last two weeks I have felt very ill, lethargic,with stomach pains, and the last two nights had accidents before I could get to the bathroom, one during sleeping. I also noticed it made me start belching during the treatment and I seemed to have increased gas as well.
So I don't think this works for me, and I am just wondering if anyone else had it fail in the middle of still taking this medicine and also
How did most of you taper off of this medicine.
Any sharing of your experience would be greatly appreciated.
thank you!
Janie

[tex]

Hi Janie,

I was hoping someone who actually used budesonide would share their experiences here, but it appears that most people are too busy to check in these days. Regarding your symptoms, there are a couple of possibilities here:

• Your diet was probably repeatedly compromised during your trip to London, so that any healing progress you might have been making before the trip, was probably lost during the trip.
  
  As you suggest, budesonide may not just be ineffective for you, you may be reacting to some ingredient in the drug itself.

At any rate, you can find the most common drug recommendations in the following newsletter recently published by the Microscopic Colitis Foundation. In case you don't have a copy, here's a direct link, for your convenience:

https://www.microscopiccolitisfoundatio ... _final.pdf

And here are the tapering suggestions for budesonide, mentioned in that newsletter:

Properly tapering the dose when ending a treatment, is critical for preventing a
relapse.
A common budesonide treatment regimen recommended by gastroenterologists is one month of taking 3 capsules (9 mg) daily, two weeks of taking 2 capsules (6 mg) daily, and two weeks of taking 1 capsule (3 mg) daily. We suggest that this tapering process should be carried much further, by taking 1 capsule every other day for a couple of weeks, followed by taking 1 capsule every third day for a couple of weeks, at the very least. Many MC patients find that it helps to carry this process even further, by taking 1 capsule every fourth day for a couple of weeks, then taking 1 capsule every fifth day for a couple of weeks, and some even carry it out to taking 1 capsule every sixth day for a couple of weeks or more.

I hope this helps,

Tex

[jmarksberry]

Thank you for your response. However, I don't think my physician agrees with me in that I wanted a slower taper like showed through the article, so I will probably run out with no refills in the end.
If anyone else has anything to add per their experience, I would really appreciate it and might help me to convince my Dr to at least reconsider.

Also, I am just curious if anyone else found this to not continue to work once they started tapering , and not just after finishing the initial round.

I am also wondering if this just doesn't work with Mast Cell issue and if there is a test for this?
Thanks to all
Janie

[tex]

Hi Janie,

Although most doctors may not be aware of this, published medical research shows that corticosteroids work by suppressing the populations and activity levels of mast cells. As budesonide is tapered, mast cell numbers tend to rebuild, and by the time the treatment is ended, they have returned to normal levels. But if the treatment is ended too abruptly, or too soon, mast cell members tend to rebuild to quickly and they overshoot normal population levels and then slowly settle back down to normal levels. But the fact that they overshoot normal levels is the reason that 85% of patients who respond to budesonide treatments relapse within a few weeks after the treatment is ended, assuming that it's ended by a normal tapering schedule (because when mast cell numbers exceed normal levels, they become activated).

As far as I am aware, there is no medical test to indicate whether or not budesonide is effective for any particular patient, nor is there any medical test to measure mast cell numbers. The only tests available are mostly indirect, in that they measure inflammation levels in the body.

I hope this helps, and I hope someone else will share their experiences with budesonide.

Tex

[Gabes-Apg]

Hi there
I personally have not taken budesonide /steroid for MC.


My observation based on what others have shared here. only a very small number of people attained stable remission with budesonide alone. Most success for stable remission came via removing/minimising major triggers whilst on the medication and taking key nutrients that help the body moderate inflammation and heal. Have you made any diet changes / lifestyle changes to minimise inflammation?

are you taking any key nutrients such as Vit D3 and magnesium?

There are quite a few posts in the success stories area that detail what others did, what worked (what didnt) how long it took etc.
if you use the advanced search function - search for the word budesonide in the success stories area - you will get the posts that discuss this

hope this helps

[brandy]

Janie,

If it worked for you at 9 mg then it works for you. The doctor moved you to the lower doses way too fast.
Some have to stay on the 9 mg 6 or 8 weeks before stepping down while some can step down at 10 days.

[brandy]

Janie,

I just reread your post. It sounds like the budesonide works for you but the doc rushed the taper. Many have to stay on 2 pills for 6 - 8- week or more before stepping down to 1 pills.

In order to get off of budesonide without relapse you need to have a very safe diet.

[Sadie110]

Hi Janie,

It's understandable to be concerned about stopping Budesonide suddenly. Here are some key points:

Sudden Stopping: Stopping corticosteroids suddenly can cause withdrawal symptoms or flare-ups. Gradual tapering is usually recommended, but your doctor might have specific reasons for his advice.

Doctor's Approach: Your new doctor wants to perform a colonoscopy to understand your condition better. This procedure can guide your treatment plan.

Symptoms: Feeling lethargic, stomach pains, accidents, increased belching, and gas can be side effects of the medication. Communicate these to your doctor.

Others' Experiences: Many people taper off corticosteroids gradually. Hearing from others can provide valuable perspectives.

Discuss your symptoms and concerns with your doctor again and consider a second opinion if needed.