Tapering plan for Budesonide

[CatherineWhitehouse]

Hello,
I need some help with a tapering plan for Budesonide.

I’ve been on 9mg/day for 6 months, way over the length of time my GI consultant wanted but it has taken this long, together with a LOW FODMap diet, to get to a far healthier position than I was a year ago. I’m finding that following my GIs fast tapering plan is already causing constant stomach cramps and my nausea to increase. Tiredness remains at the same level but weirdly my D is now a mix of D & C but manageable.

I’ve already started magnesium, via soaks and lotions plus vit D3 and B12 oral sprays .I’m going to start the stage 1 elimination stage on this site next week but I don’t know how to go about a sensible tapering plan despite reading the book. I need to show my GI I’ve significantly lowered my Budesonide level by December. I’ve managed to avoid Azathioprine because I have low liver function but he will still move me to a low level of Azathioprine in December if Budesonide is not down to 3.5/4mg per day. (personally I’d also like to be down to this level & no where near Azathioprine)

Apologies, that was a long winded way of saying that my fogged brain can’t draw up a tapering plan.

Many thanks
Catherine

[tex]

Here's my opinion.

The main reason why over 80% of MC patients who respond to budesonide relapse after the treatment is ended, it because budesonide works by suppressing mast cell numbers, and when the treatment is ended, and the mast cell numbers begin to rebuild, they tend to overshoot, and this often triggers a relapse, because it generates inflammation. So we learned that in addition to the prescribed tapering of the dosage, after we spend a couple of weeks or so on the dose of one capsule per day, then we continue the taper by taking one capsule every other day for two or three weeks, then we take one capsule every third day for two or three weeks, followed by a capsule every fourth day for two or three weeks, etc. Some of us have gone as far as one capsule every six or seven days, but that's usually necessary only in the most severe cases. But the reason this works is because it keeps us in remission the whole time. If we're not in remission when we start the taper, it's not likely to work.

Therefore, to ensure that we have the best possible opportunity of reaching and staying in remission, we start the diet (avoiding all traces of gluten, casein, soy, and chicken eggs), unless we have EnteroLab test results that show that we don't react to some of those foods, when we start the budesonide treatment. One strategy that works well is to reduce the dose at the first signs of constipation. Another trick that can help is to begin taking an antihistamine daily after the budesonide treatment is ended, and continue the antihistamine for a couple of weeks.

I hope this helps.

Tex

[CatherineWhitehouse]

Thank you Tex,
I’m still stuck near the 6mg/day level, the D isn’t a major issue (I can go out ) and I have C mixed in. It’s the nausea and stomach cramping that is increasing as I’ve reduce from 9mg/day.
I’ll follow stage 1 of the diet and continue the GI consultant taper and hopefully reach the above taper. Interestingly I stopped my antihistamines (for hay fever) 2 years ago and that’s when my LC really deteriorated, coincidence or not, I wonder? I thought it was unhealthy to be constantly taking Loratadine.
I am really pinning my hopes on the diet. I’ve not long ago finished the low FODMap diet and found I can’t really eat a lot, even caffeine is out apparently due to a gastric motility effect.
I’m not sure what to do about milk alternatives, I’m currently using lactose free milk, all the milks listed in the stage 1 diet cause me stomach problems. No milk as well as coffee is going to be tough.
Onwards and upwards.
Many thanks for all the help
Catherine

[tex]

The primary problem we have with milk Is not associated with the sugar lactose. True, while our digestive system is inflamed we cannot digest lactose, so it can cause diarrhea when it reaches our colon. But lactose does not cause our immune system to produce antibodies. The primary protein in milk is casein, and those of us who are sensitive to casein produce antibodies against it that trigger a reaction whenever we eat or drink any dairy product.

Reading your description of your symptoms, it's becoming apparent that you are having the same problem that many of us have. The reason many of us cannot coax our MC into remission (or into complete remission) is because we have histamine issues associated with MC. MC depletes diamine oxidase enzyme (DAO) which the body uses to purge excess (unused) histamine from circulation. It can present as a classic histamine reaction where we break out in hives, or a rash; or it can disrupt our digestion if it focuses on the digestive system. And to further complicate matters, some of us have mast cell activation syndrome (MCAS). Some of us can resolve our histamine issues by taking a DAO supplement, but that doesn't work for those of us who have MCAS.

Needless to say, these additional issues can be difficult to resolve on top of an already restricted diet. For those of us who have MCAS, the vagus nerve (the gut brain connection) can be involved, so this can be a complex situation. I'm currently in the process of writing an article about the vagus nerve association with histamine, But I still have a long way to go, so I'll email you an article that will appear in a few days on my blog (on the Microscopic Colitis Association Website), and a little information about the vagus nerve involvement with this.

If you don't receive the email, or can't open the articles that are attached, please let me know and I'll try to send them some other way.

Tex

[CatherineWhitehouse]

Thank you Tex,
It’s no wonder some of us struggle with remission.
I will go off and digest all the info. along with the stage 1 diet but I am feeling like I need a degree in biochemistry and dietetics
All the best.
Catherine