Budesonide wean

[Cakes6847]

Good morning all...i am looking for help on how slow to wean from Budesonide. I began 9mg daily on 9/21/20. Decreased to 6mg daily on 11/25/20. Attempted 3mg 1/06/21 but some symptoms reappeared so back up to 6. I started 3mg on 2/15 and so far so good.
When can I decrease to every other day? And then every 3rd day etc? Is it too soon now or should i stay at 3mg for longer?

Thank you for your assistance:)

[jcml12]

It is really important that you have removed Gluten and all the other things from your diet even on the Budesonide. Five years ago I was on Budesonide for a year but for most of that it was 3 mg and the last 3 months of it I took 3 mg every 3 to 4 days. I did great and the only times I had any problems at all was when I put something in my mouth I shouldnt have. If you are eating really well and your symptoms are coming back when you go to 3mg it might mean you just have not healed enough. Your body will tell you. I wish it was the magic pill but its not. I hate this disease.

[Cakes6847]

Thanks for getting back to me so quickly. I am free of gluten, dairy, soy, grains. I have eggs rarely but when I do they are duck eggs. My diet has consisted of bananas, sunflower butter, turkey (and recently lamb) sweet potatoes, butternut squash, green beans (roasted beyond recognition), applesauce and cassava chips (my daily treat). I have recently also returned to one coffee daily w macadamia milk.
I feel I have been compliant w the elimination diet. But I am sure of absolutely nothing with this disease.

[tex]

The safest way to step down a budesonide treatment is to use the first signs of constipation as the signal that it's time to reduce the dose.

Tex

[brandy]

Hi Cakes,

I was a budesonide user. You really want to listen to your body. Essentially you want consistent solid stool for day after day after day. When you get to the lower end your solid stool should be normans but might be mushy normans if that makes sense.
If you have any kind of loose stools, or WD do not do any step downs but rather stay the course or increase. If you have had 30 - 60 days of routine bowel movements (might be some mushiness but no gas, no loose stools, no WD you
can consider trying one pill every other day. If you have 30 - 60 days of routine bms at every other day consider going to one every 3 days. My bms were normans but mushy when I was at low dose budesonide.
IF you get constipation definitely step down sooner.

When you decide to stop budesonide keep to very, very safe diet for a couple of months after last pill. You might
consider adding a small dose of an otc antihistamine several days before you last dose and for about a week after your last dose. The antihistamine will help reduce increased histamine reaction from stopping a steroid.

It is not uncommon for MCers to be on budesonide for 5-6 months total before stopping. American docs prescribe for 3 months on budesonide and that is not long enough.

[Cakes6847]

Thank you Brandy for a very comprehensive answer. I understand that this is a very difficult disease process, it’s so easy to get irritated, frustrated, depressed. But your answer is telling me - pretty clearly- do NOT rush the process.
My “movements “ are still mushy. Ugh! So i will maintain the dosage (I am into my 6th month on Budesonide) and try to be patient and allow my body to heal
Thank you again

[Cakes6847]

Good morning everyone
I have a question about collagen supplements. Most of them seem to be “bovine” based. If i showed sensitivity to beef, is this type of collagen off limits?
Thanks for your help

[tex]

Probably, but that's not necessarily true for all of us.

Sorry I couldn't be more specific.

Tex

[Cakes6847]

Thank you Tex.
I sort of felt there would not be a clear answer. This disease process is confounding
But I thank you for your help