Budesonide Taper

jnmast · Post by **jnmast** » Fri Dec 21, 2018 9:37 pm

Hi,
For those who have experience with SLOW and effective Budesonide tapers, I have a question regarding timing.
I've done well with going two months between dose changes: 2 months of 9 mg. per day, 2 months 6 mg. per day, 2 months 3 mg. per day and now have just finished first month of 3 mg. every other day. I'm seriously considering going straight to 3 mg every third day after just one month, but am wary of messing with what has been a successful taper pattern.

Any insight or thoughts? I'd like to get off of the med asap and have been feeling good, but again, don't want to rush it.
Thanks in advance for your thoughts and happy holiday weekend to all!

brandy · Post by **brandy** » Fri Dec 21, 2018 9:58 pm

Hi Jacqueline,

Brandy here. 4.5 month budesonide user. I'd say listen to your body. You seem to have a good handle on things.
I think you will be fine with 3 mg every third day for a month.

Stick to very safe diet for 45 - 60 days after your last pill. Also consider taking an antihistamine (start a day or two
before your last pill and take for maybe a week or 10 days after your last pill. If antihistamine dries you out too much
take 1/2 dosage. The antihistamine is extra protection against reflare.

I feel confident you will have no problems getting off of the med.

Merry Christmas to you too!

jnmast · Post by **jnmast** » Sat Dec 22, 2018 6:35 am

Thank you Brandy for your thoughts!
I do feel good about it thus far so will try it-- I can always go back to one every-other.

Agree about the limited diet, that has been my saving grace and what I believe has allowed me to get this far so I'm definitely planning on continuing.

Regarding the histamine, also agreed, wholeheartedly. I've been fortunate to have found a naturopath that advised a natural 'histamine scavenger' early-on and when I was diagnosed with CC quickly increased my daily dose. That in and of itself, has also been so supportive of the healing.

Thanks again for your insight and happy holidays to you as well!

Kilt · Post by **Kilt** » Sat Dec 22, 2018 5:42 pm

I'd stick with your two month pattern rather than shifting to a lower dose earlier. What's the risk in sticking to your successful schedule? To me, there seems to be none. The greater risk, in my opinion, is a return of diarrhea by accelerating the schedule. I say that in the context of my belief that there is little net risk to me in staying on a very low dose of budesonide indefinitely, so long as I take care, and am monitored, to prevent osteoporosis and adrenal fatigue.

I'm on a slower budesonide taper than you and plan on sticking to it:

8 weeks - 3 pills a day
8 weeks - 2 a day
8 weeks - alternating 2 and 1 a day. I'm in my last week of this.
8 weeks - 1 a day
8 weeks - 1 every other day

After that, I'll probably go to 1 every third day and perhaps stay on that forever if it's still effective. By effective, I mean no diarrhea and the ability to eat what I want.

I can eat what I want so far on budesonide, except that I've pretty rigorously stayed on low fiber foods, no caffeine, no alcohol (for 30 years), no artificial sweeteners except some occasional Stevia, and no NSAIDs. I see nothing in my past or in medical literature that convinces me that food intolerances caused my microscopic colitis -- though food intolerances may cause a variety of other gastrointestinal conditions that some people may have in conjunction with microscopic colitis. I have no opinion on antihistamines and don't really understand their relevance to MC. I know they're bad for my prostate issues and some other things.

In fact, I've been pigging out so much since going on budesonide that I've got to shift back soon to a low carb diet, which I much prefer for weight control and many other health reasons aside from GI issues. It's also naturally low in gluten, which seems like a generally unhealthy thing to eat even if unrelated to my MC.

tommyboywalker · Post by **tommyboywalker** » Sat Dec 22, 2018 5:55 pm

Jacqueline,

I adopted the "6 week" interval for Budesonide taper. 3 a day for 6 weeks, 2 a day for 6 weeks, 1 a day for 6 weeks, 1 every other day for 6 weeks, 1 every third day for 6 weeks and finally 1 every fourth day for 6 weeks.

I was going to go 1 every 5th day as well, but stopped after 1 every fourth day as I had stem cell therapy at that time on my knee and any kind of a steroid (even Budesonide which isn't systemic) isn't a good thing for the stem cell healing process. As I had been in remission for a long time, I decided to stop at that time and it worked out.

So from what I have seen and read, there is the somewhat standard "4 week" Budesonide taper interval which is recommended by many GI doctors, (not long enough IMHO) then the longer "6 week" and "8 week" step intervals which have a better track record of success. My GI doctor trained under Dr. Pardi who is the Colitis guru at the Mayo Clinic in Rochester MN. We discussed this at length and agreed on the 6 week taper step interval and it worked well for me.

But as they say in the financial industry, "your results may vary"! Every body is different! The taper step interval of 6-8 weeks makes much more sense to me and seem to have a better track record of success from all of the threads I have read.

I'm doing great! I did have one short flare just after the stem cell therapy but that could have been caused by stress of a recent relationship breakup, antibiotics for the stem cell injections, etc. Who knows. But with the help of some Imodium which slows down GI motility, I was back fairly quickly to my normal bathroom habits.

I am gluten free and dairy free,which I believe is extremely important for me. I based my decision to go gluten free and dairy free on my Enterolab food sensitivity test results and also from what I've read in Tex's book on Colitis (great read for all, highly recommended) and all the threads I've read. I firmly believe DIET is critical to success here......

More specifically to your question, you might be fine with a month on this next step. But I'd consider going 6 weeks instead of cutting your interval in half, maybe split the difference? Even though you are feeling well, keep in mind that the gut takes a long time to settle down, much less heal. Long term remission is the goal here. Slow and steady wins the race.

Best of luck to you and keep us updated....we're all in this together!

jlbattin · Post by **jlbattin** » Mon Dec 31, 2018 3:54 pm

I was on budesonide for about a year and a half and my taper was incredibly slow. I did one pill about every 5-6 days for about 2 months before finally stopping and did just fine!