Thoughts on Budesonide taper strategy

tommyboywalker · Post by **tommyboywalker** » Mon Apr 09, 2018 12:18 pm

Hi All,

I am pondering a tapering strategy for Budesonide and would like to know your thoughts, advice, recommendations, etc.
Here is the history of my diagnosis/symptoms.

*Was perfectly healthy until August 14, 2017 when I developed a parasitic infection (Cryptosporidium) from lake water. Took a fair amount of time and testing though to get a positive hit for it. I took a week of anti-parasitic medication that resolved it.

*Even though numerous retests for Crypto were negative, symptoms of watery D (up to 10X daily) continued.

*Diagnostic colonoscopy where biopsy tissue was obtained from numerous spots in the large intestine. The pathologist diagnosed it as "Evolving Lymphocytic Microscopic Colitis", almost assuredly caused by the parasitic infection.

*Tried the Pepto Bismol therapy with no improvement

*Switched to Budesonide, 9MG daily on February 5th at which time I also started a religious gluten free and dairy free diet, because of reading Tex's book and this forum (thanks Tex and all of you) and discussion with my doctor. Response began within 10 days, I achieved clinical remission in a little less than a month and by March 18th of this year, I am thankfully back to my normal GI baseline, the same as before the infection. Pretty excited about the improvement!

*I am to meet with my GI doctor in the middle of April for a consult and to talk about how I will taper. He seems to be quite knowledgeable as one of his mentors at the Mayo in Rochester, MN during his residency was Dr. Pardi, who specializes in Colitis. I am lucky in that my GI doctor understands the importance of diet in treating Colitis!

*I told my doctor that I was in no hurry to start tapering because of the known high chance of relapse. However, we did talk about the fact that I have a few things going for me. One is that I haven't had this for very long in the big scheme of things, two is we know what caused it, and three is that the pathologist said my condition was "evolving" and likely not full blown.

*Also in my favor is that my Enterolab results from a while back (I was only taking Budesonide for a week), while showing marginal sensitivity to both gluten and dairy, are not very high.

-Fecal Anti-gliadin IgA: 11 units (Normal range is less than 10 units)
-Fecal Anti-casein (cows milk) 10 units (Normal range is less than 10 units)
-No sensitivity to eggs or soy
-Normal range in all of the other tests (4-6). I have only Oat and Tuna in the 1+ column and none in the 2+ or 3+ column

*I understand the importance of allowing enough time for the gut to heal before I start to taper. I have enough Budesonide to last until June 4th, so that means I will have been on full dose Budesonide for 4 months at that date.

I am thinking about tapering from 9mg to 6mg for one month, 6mg to 3mg for another month and then stopping the drug. Does this sound appropriate? Instead of stopping after 3mg, should I go to 3 mg every other day, third day etc. or would stopping completely be appropriate for me?

The other question is WHEN do I start the taper? Is 4 months full dose of Budesonide enough or do you think I should go 5 or even 6 months before I start the taper? I also plan on staying gluten and dairy free for a long period after tapering is complete, even if I am successful. Heck, I may just stay GF and DF for good!

Sorry for the book, but I want to go into my next GI appointment with a strategy in mind and see if he agrees. At last appointment, it sounded like he may be willing to give me some leeway on this, as long as I start a taper strategy in the near future.

Thanks so much in advance for any thoughts!

Post by **tex** » Mon Apr 09, 2018 12:49 pm

If you are in solid remission, You can probably begin the taper at any time after a couple of months (IOW now), provided that you adequately extend the taper period. IOW, if you fail, you have to completely start over — it's prudent to "take out a little insurance" by extending the taper so that your total regimen is at least 6 months altogether. Tapering beyond 3 mg per day is usually very helpful (and often necessary). The record books are full of patient's names who stopped at 3 mg only to relapse in a few days, weeks, or months.

Tex

brandy · Post by **brandy** » Mon Apr 09, 2018 2:33 pm

Hi Tommy,

Brandy here. I was a 4.5 month budesonide user.

I was trying for 5 months but got off at 4.5 months due to side effects.

As long as you are having solid stool you should be able to start your taper now like Tex said.

It sounds like you have a good handle on the diet.

Listen to your body about your step down time.

Does this sound appropriate? Instead of stopping after 3mg, should I go to 3 mg every other day, third day etc

Above is a good plan. It is less risky than stopping abruptly after 1.

A couple other comments. Start anti histamine several days before your last budesonide. Stay on anti histamine for about 5 days after last budesonide. It will help prevent reflare.

If any stressful events come up in your life: job change, move etc....stay on budesonide slightly longer.

Stay on your very safe diet for 4 - 6 weeks after last budesonide.

Your plan is very solid. Three other ladies got off of budesonide at the same time. All of us have stayed drug free (since 2011.)

I also plan on staying gluten and dairy free for a long period after tapering is complete, even if I am successful. Heck, I may just stay GF and DF for good!

Tommy you are doing everything right! Diet change is key. Those who commit to diet changes like you are heal much faster. It is very sad when we have members struggling with MC for many years who refuse to make diet changes.

Welcome to the forum!

jlbattin · Post by **jlbattin** » Mon Apr 09, 2018 4:23 pm

I took Budesonide for almost a year, but after about 3 months of 9 mg everyday, I started tapering. I tapered very slowly and towards the end was taking 1 3 mg. capsule about every 5-6 days. I had no issues at all when I finally stopped taking it!

tommyboywalker · Post by **tommyboywalker** » Tue Apr 10, 2018 2:53 pm

Thank you all very much for your replies and advice! I am now much more confident going into my next GI appointment on what I would like to see in regards to Budesonide taper strategy.

I am hoping that my GI doctor will agree to a 6 month taper regimen as you suggested, Tex. 6 mg daily for a month, 3 mg daily for a month, 3 mg every other day for a month, 3 mg every third day for a month, 3 mg every fourth day for a month, 3 mg every fifth day for a month. Sound reasonable?

I will have to research antihistamine, Brandy. I am pretty new to the disease and forum and I need to understand the Colitis/Histamine relationship. I am willing to do anything and everything I need to do to be successful on this the first time around.

Oh, forgot to mention that I also stopped taking all NSAIDs after my diagnosis. I have CRPS, a chronic pain condition since 2008 and have been taking 440 mg of Aleve (Naproxen) daily for years, down from 880 mg daily for the first few years when I first got it back in 2008. But because of the possible relationship of NSAIDs to Colitis, (NSAIDs may have contributed to me developing Colitis) I stopped taking them even though I really do miss them for my CRPS.

I am doing more "mindfulness meditation" daily which really helps with the coping of multiple chronic conditions. The importance of the mind-body connection cannot be overstated, right?

Any other comments, keep em coming and thanks again! This forum is an invaluable resource.

Post by **tex** » Tue Apr 10, 2018 4:03 pm

If at any stage you develop signs of constipation, that means that it's time to step down to the next dose. If you fail to lower the dose, the constipation can become a major problem. IOW, listen to your body, in case you need to shorten the treatment period. Otherwise, your plan sounds good.

Tex

brandy · Post by **brandy** » Tue Apr 10, 2018 8:42 pm

Have you read the John Sarno books? https://www.amazon.com/Mindbody-Prescri ... X5TGNBSN72, and
https://www.amazon.com/Divided-Mind-Epi ... X5TGNBSN72

He is known for his first book: https://www.amazon.com/Mind-Over-Back-P ... X5TGNBSN72

I got rid of chronic headaches using his techniques.

Brandy

tommyboywalker · Post by **tommyboywalker** » Fri Apr 13, 2018 6:55 am

Thanks for those book tips, Brandy! I will check out John Sarno. While I have heard of him, I haven't actually read any books of his.

Always looking for complementary strategies to help manage chronic conditions.

tommyboywalker · Post by **tommyboywalker** » Fri Apr 27, 2018 4:43 pm

Update on my Budesonide tapering.

As you predicted, Tex......recently, I started to experience mild constipation which was then my cue to reduce my Budesonide dosage. I had been taking 3 capsules of 3mg Budesonide since February 5th.

So on April 14th, I went from three capsules down to two. So far, so good. I am feeling quite good, the best I have felt since August of 2017. Two capsules seems to be the appropriate amount of the drug at this point in my healing.

Along with the "slow Budesonide tapering", I am also being very disciplined on being both gluten free and dairy free, which I am convinced (because of all of you) is absolutely essential to the GI healing process.

I have also increased the amount of Vitamin D that I am taking. A recent test showed I was at 20 which I know is too low, especially with Microscopic Colitis which depletes that vitamin.

So I'll stay the course and hope for the best. Which is what I hope for all of you as well. We're all in this together, right?

Post by **tex** » Fri Apr 27, 2018 4:48 pm

Indeed we are (all in this together).

Tex

brandy · Post by **brandy** » Fri Apr 27, 2018 8:19 pm

Great job! Keep us posted.

tommyboywalker · Post by **tommyboywalker** » Wed May 09, 2018 9:34 am

I saw my GI doctor yesterday. He is very pleased with my progress to this point. I pitched my proposed "SLOW BUDESONIDE TAPER" strategy to him and I wasn't sure just how he would respond. I was wondering if he might want me to taper faster.

I was pleased when he not only agreed with my slow tapering, he suggested that instead of 1 month step increments on reducing the Budesonide dosage, he suggested I go 6 weeks between dosage reduction. I am currently on 2 capsules daily, down from starting dosage of 3.

He said that the literature out there shows that the risk to the human body of a slow taper of this corticosteroid is very minimal. He has Colitis patients that have failed the taper and now have to take 1-2 capsules of Budesonide per day indefinitely, and he is okay with that.

But he did mention to me, as did Tex on this forum/this thread, that if constipation occurs at any time during the taper, that is a likely cue for me to reduce dosage immediately.

He is pleased that I am gluten free and dairy free and low fat / low fiber. (This doctor gets the diet connection with MC). I haven't been able to give up my coffee but I have compromised a little by mixing half regular with half decaf. But coffee really doesn't seem to bother me. He said that there really isn't anything more that I can be doing and that I am following the Mayo Clinic protocol for Microscopic Colitis as he understands it from his mentor/Program Director, Dr. Darrell Pardi who is the Microscopic Colitis guru at the Rochester Mayo Clinic.

He did add though that somewhere down the line, if I am able to successfully taper off Budesonide and if I am able to successfully reintroduce gluten and have that in my diet for about 2-3 weeks, that it would be a good idea for me to have an upper endoscopy to test for Celiac Disease.

So things going pretty well. Stay the course with fingers crossed! Thanks for the support here on this forum!

brandy · Post by **brandy** » Wed May 09, 2018 11:10 am

Tommy you are doing a great job!

brandy · Post by **brandy** » Wed May 09, 2018 11:13 am

A couple other comments. Start anti histamine several days before your last budesonide. Stay on anti histamine for about 5 days after last budesonide. It will help prevent reflare.

I wasn't sure if you saw this before. Very low dose is ok if it dries you out too much.

tommyboywalker · Post by **tommyboywalker** » Wed May 09, 2018 11:48 am

brandy wrote:
A couple other comments. Start anti histamine several days before your last budesonide. Stay on anti histamine for about 5 days after last budesonide. It will help prevent reflare.
I wasn't sure if you saw this before. Very low dose is ok if it dries you out too much.

Thanks for this reminder, Brandy!

Actually I am taking a night time sleep aid right now which consists of Diphenhydramine HCL 50mg. While used for sleep, it is actually an antihistamine.

I am hoping that this dosage will be enough? I would eventually like to get off of this, but feel I should stay on it at least through the taper and a bit beyond for the reason of helping with reflares.