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Treatment options for UK triathlete with microscopic colitis

Fri, January 17, 2020 11:21 AM

Hi everyone! I was diagnosed with Collagenous Colitis 5 yrs ago. I have variable stool frequency. Sometimes it's 10/15 a day. Sometimes things settle down and it's only 1 or 2.

Basically, nothing helps except Budesonide. (Though I've never tried Mesalamine.) For me, Budesonide is a miracle drug, and I've done several courses with no side effects, tapering to 3mg. My Drs now want to put me on azathioprine. I had blood testing at my last appt in October, and have a follow up next week.

What are people's experiences of AZA? Put bluntly, I'm scared of having my immune system suppressed. The risk of lymphoma seems acceptable, but I'm also worried about the increased skin sun sensitivity it causes and the risk of non malignant skin cancer. I never sunbathe, but I'm a runner/triathlete and spend a lot of time in the sun. Even the best sunscreen is never 100% effective.

My preference would be to do a maintenance course of Budesonide where I taper to 3mg and take that for a long period. But I know steroid side effects are dangerous, even if Budesonide has fewer systemic ones.

Does anyone know if there's a safe number of Budesonide courses per year? And has anyone tried long term low dose Budesonide? If so, what did your Drs advise about safety? Are there any other drugs that you've been recommended that may not be on the regular treatment matrix?

Thanks for any advice you might have!

UKrunner
Joined Nov 8, 2018

Sun, August 28, 2022 4:34 AM

Reply posted for margotcantrell1.

For the sake of safety, those affected should familiarize themselves with the locations of public restrooms before venturing outside. It is possible that the severity of symptoms will prevent a person from going anywhere. The severity of symptoms and the resulting decline in quality of life can vary widely. trap the cat

margotcantrell1
Joined Apr 22, 2022

Sat, February 29, 2020 7:46 AM

Reply posted for Lauren.

Hi Lauren,

Thanks so much for your reply - I'm really pleased to hear that the budesonide has helped you so well. It has that effect on me too.

In the end, my Dr suggested a low dose year long regime, tapering to 3mg per day from 9mg. However, I've just (this week) had a bone scan and discovered that have low bone density (ostopenia), particularly in my spine. To be honest, I was really surprised. I'm a 51 year old man, but I don't smoke and I've been active all my adult life.

I don't get to see my gastro Dr again till May, so can't quiz him about this till then. However, a visit to Dr Google seems to suggest that there's differences of opnion on Budesonide's effect on bones.

I'm curious to know - have you had any DEXA scans during your 10 year treatment, and if so, have you noticed any difference in your T/Z scores?

Hope you're having a great weekend!

Will

UKrunner
Joined Nov 8, 2018

Wed, February 26, 2020 8:48 PM

Reply posted for UKrunner.

Hi, I have been on a low dose, 3 mg, of budesonide for at least 10 years of CC management. My GI said it is so low that I should not experience any side effects. As far as I know, I have not. It was the only drug that has worked for me. My symptoms may be better with a higher dose but this is manageable and I have a normal life so do not increase. Hope this helps!

Lauren
Joined Feb 26, 2020

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