When will Budesonide work

[wardeljan]

Hello,
I am finishing week 5 of budesonide 9 mg. I have had minimal improvement. What is the average improvement time that people have experienced. My prescription states to reduce to 6 mg at week 8 and then 3 mg at week 10.
Thank you.

[tex]

The time varies, but it's usually less than two weeks, although sometimes improvement comes in only a few days, and occasionally a month passes before the symptoms improve significantly. If you haven't seen significant improvement by now, it's probably not going to happen. And as soon as you reduce the dose of budesonide, it's even less likely to happen. Have you at least cut gluten out of your diet? If not, your immune system reactions against your antigliadin antibodies is probably overpowering the budesonide in its efforts to suppress the inflammation.

Tex

[wardeljan]

Thanks for your reply. Yes, I was diagnosed with celiac disease in January and have cut out all gluten as of then. My daughter has celiac so I am very familiar with the diet and have been religious about not putting a speck of gluten in my body. I also have cut out casein since casein can mimic gluten, as I understand it. I wonder if I should stay on the full 9 mg for awhile longer. I’m supposed to be on 9 mg for eight weeks and I am quickly approaching that time.

[tex]

You should be in remission by now, but if the budesonide is helping any at all, your symptoms will probably increase when you reduce the dose. I wonder if you might be reacting to soy so severely that it's overriding the budesonide effectiveness. I believe I would try avoiding soy, and all its derivatives, for five or six days to see if that helps. If it doesn't, I would try avoiding eggs for five or six days, if you're currently eating them.

Tex

[wardeljan]

I will double check all labels. I am not aware of soy in my diet, but quite possible since it is hidden in a lot of foods. I eat eggs occasionally, not regularly, so I will try eliminating them as well. I will say the medication has helped minimally. Although my understanding is that my symptoms will most likely come right back. Super frustrating.
Thanks for your reply.

[tex]

Have you considered all of the information discussed in the January 1, 2024 issue of the newsletter published by the Microscopic Colitis Foundation? If you haven't, for your convenience, here's a direct link where you can either read or download a copy of that newsletter:

https://www.microscopiccolitisfoundatio ... mplate.pdf

Especially, consider the information about BAM, if nothing else captures your attention.

Tex

[Bobinmom]

Finally after 4 and 1/2 years I found a doctor who had answers on how to help my MC!!

He said research shows Vit D3 and balancing your thyroid at or about a 1 on the scale. Will help my colon heal. I didn’t believe him. He said give it 2 months and I should notice a difference. But it may take a year to heal completely.

I asked my new gastroenterologist, she AGREED! Yet, never suggested it .

Doctor had me order Vit D high dose 50,000 IU on Amazon. Said it won’t upset my gut. He was correct.

Also, had me take a probiotic that a dr must recommend in order for you to order. It has more ingredients than over the counter. I was to take for 30 days that’s it.

I’m so optimistic that I may get well again. I lost 90 lbs! Now I need to gain.

Bobinmom

[tex]

I hope your recovery goes smoothly.

Tex

[tommyboywalker]

My experience with GI doctors has varied tremendously. Some give credence to the importance vitamin D levels, some do not. Some believe in a very extended course of Budesonide, others do not. I used a very extended course of budesonide after my initial diagnosis and another time when I relapsed. Both times resulted in a remission, I have been in remission since 2020.

Vitamin D levels ARE important and Budesonide often (not always) works very well.

Have you read Tex's book "Microscopic Colitis". That is a must read for everyone with this disease.

Do you know what your vitamin D levels were when you tested low? I initially tested at 25, a year later I was at 50. Now I am at 75. I get tested annually now. I take 3,000 iu daily of Vitamin D3.

[Catieu]

Hello Wardeljan,
Budesonide never had an effect on me. I didn't notice any improvement. The gastroenterologist decided to switch to another corticosteroid, beclomethasone dipropionate.
A big hug
Marta

[donnagail]

I was on Budesonide for 15 years. I tried to wean off of it last Nov and Dec. In Jan 2024, my body went into adrenal crisis after I totally got off it. I had to make a decision to call 911. I did not know that I could have died. After 15 years on steriods, my adrenal glands stopped producing hydrocortisol, so when I stopped, my body had zero strriods and went into crisis mode. I am now seeing both my GI and an Edocrynologist to oversee getting off of it safely. Now I am taking hydrocortisone and azothioprine and hope to get off both soon, even if I am having flareups. I won't go into all the details of that, but if you have been stating steriods for a long time, it takes a long time to wean off. My MC is flaring up quite a bit now, but I am researching better alternatives than getting back on steriods.

[Gabes-Apg]

donnagail

oh my - lots of healing energy for you

it might be worth researching how functional medicine approaches adrenal fatigue.
it is one of the aspects I have done in my whole of body healing journey.