Budesonide - Long term?
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Re: Budesonide - Long term?
I was on Budesonide for 15 years. I decided to wean off of it Nov and Dec 2023, sorta under my GI's care. After completely getting off, my body went into adrenal crisis. I had to make a tough decision to call 911 because I was fading fast. The hospital told me I could have died. They explained to me that the adrenal glands naturally produce a steriod, hydrocortisol. Budesonide had suppressed the adrenal glands from producing, so when I took myself completely off budesonide, my body went onto crisis because then I no longer had any steriods in my body. I was extremely dehydrated when I arrived at the hospital as I had been throwing up and dirrehea for a solid 3 hours. So after pumping me with fluids, and giving me the steriod, hydrocotisol, after 2 days I started feeling better. I am still on hydrocortisol to hopefully get my adrenal glands working again, but no guarantee. My GI is also trying azotheoprine in place of budesonide. I don't think azo it doing me any good. I think it's causing bloating and constipation and as a result of that, comes the diarreah. I don't want to get back on Budesonide so I take 2 or 3 Imodium to stop the diarreah, which in turn, starts the whole cycle again of boating, constipation and then the diarreah comes.
Re: Budesonide - Long term?
Hi,
Welcome to the group.I'm sorry to read about your adrenal crisis. Were those 15 years at the full dose? And would you mind describing the details of exactly how you weaned off budesonide, because that may be very important information for others to know.
We usually recommend an extended taper period. Following the usually prescribed weaning process, we recommend a week or two of using one 3 mg capsule every other day, followed by a capsule every third day for a week or two, followed by a capsule every fourth day for a week or two, followed by a capsule every fifth day, etc., depending on how long a patient feels they need to draw out the taper in order to remain in stable remission.
Tex
Welcome to the group.I'm sorry to read about your adrenal crisis. Were those 15 years at the full dose? And would you mind describing the details of exactly how you weaned off budesonide, because that may be very important information for others to know.
We usually recommend an extended taper period. Following the usually prescribed weaning process, we recommend a week or two of using one 3 mg capsule every other day, followed by a capsule every third day for a week or two, followed by a capsule every fourth day for a week or two, followed by a capsule every fifth day, etc., depending on how long a patient feels they need to draw out the taper in order to remain in stable remission.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Re: Budesonide - Long term?
Oh my goodness, donnagail, I'm so sorry to hear about your experience with Budesonide. Thank you for sharing your story, it's a great warning for others. Hope you're doing better now and that your adrenal glands will recover with time.
Re: Budesonide - Long term?
Greetings, this is my first time posting to this site. I have a question - does taking Budesonide work against recovery of the intestine? Or, if I am careful with my diet (based on results from Entero Labs which I recently received - thanks so much for that reference!) will improvements continue even though I am taking Budesonide.
Re: Budesonide - Long term?
Hi,
Welcome to this group. Inflammation is the first step in the cycle of the healing process, so from that viewpoint, since budesonide suppresses inflammation regardless of the origin, yes, it tends to slow down the healing process. So theoretically, at least, although using budesonide while following the diet should make life more pleasant by masking the symptoms, it will do so at the expense of delayed healing. When properly used (ending the treatment with a slow dosage taper), the difference in healing times would probably be difficult to measure. This is because gluten antibodies (antigliadin antibodies) have a 120-day half-life, making them very persistent.
Consequently, for most of us, it probably takes roughly 6 to 8 weeks to get the effects of gluten out of our system after cutting gluten out of our diet. A few respond to the diet much faster (if their antibody level is relatively low to begin with). The point is, our body is not likely to do any significant healing until the antigliadin antibodies have declined sufficiently so that gluten is no longer dominating our immune system, causing us to continue to react. If we're using budesonide, we should be able to enjoy a cessation of the symptoms for most of that period, but the actual healing will probably begin at about the same point in both scenarios. So I suppose what I'm trying to say is that, yes, budesonide slows down the healing process, but it probably doesn't really matter very much for most of us, in the long run.
Although the symptoms should be under control after a few months of following the diet, healing of the intestines is a slow process (the Microscopic Colitis Foundation published a newsletter on October 1 that explains why https://www.microscopiccolitisfoundatio ... 864178.pdf ). Complete healing of the intestines, so that the cells of the epithelia of the colon return to normal histology, can take from 5 to 10 years, depending on our personal situation, our age, and various other factors. In other words, after healing is complete, a pathologist looking at samples taken from the epithelia of the colon during a colonoscopy would see no evidence of MC, because the composition of the cells would be back to normal.
I hope I haven't just confused the issue,
Tex
Welcome to this group. Inflammation is the first step in the cycle of the healing process, so from that viewpoint, since budesonide suppresses inflammation regardless of the origin, yes, it tends to slow down the healing process. So theoretically, at least, although using budesonide while following the diet should make life more pleasant by masking the symptoms, it will do so at the expense of delayed healing. When properly used (ending the treatment with a slow dosage taper), the difference in healing times would probably be difficult to measure. This is because gluten antibodies (antigliadin antibodies) have a 120-day half-life, making them very persistent.
Consequently, for most of us, it probably takes roughly 6 to 8 weeks to get the effects of gluten out of our system after cutting gluten out of our diet. A few respond to the diet much faster (if their antibody level is relatively low to begin with). The point is, our body is not likely to do any significant healing until the antigliadin antibodies have declined sufficiently so that gluten is no longer dominating our immune system, causing us to continue to react. If we're using budesonide, we should be able to enjoy a cessation of the symptoms for most of that period, but the actual healing will probably begin at about the same point in both scenarios. So I suppose what I'm trying to say is that, yes, budesonide slows down the healing process, but it probably doesn't really matter very much for most of us, in the long run.
Although the symptoms should be under control after a few months of following the diet, healing of the intestines is a slow process (the Microscopic Colitis Foundation published a newsletter on October 1 that explains why https://www.microscopiccolitisfoundatio ... 864178.pdf ). Complete healing of the intestines, so that the cells of the epithelia of the colon return to normal histology, can take from 5 to 10 years, depending on our personal situation, our age, and various other factors. In other words, after healing is complete, a pathologist looking at samples taken from the epithelia of the colon during a colonoscopy would see no evidence of MC, because the composition of the cells would be back to normal.
I hope I haven't just confused the issue,
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.