I have only stopped budesonide 2 days and this morning have not been able to leave the house with watery D and feeling really sick. Coincidence? I haven't been this bad in months so I am not a happy bunny! Do I go back on budesonide maybe 1 every other day? Leave it a week and see what happens? Is this usual for some people? Not a happy bunny at all and I have to get to work but can't leave the house yet!
Anne
Very Rapid Reaction coming off Budesonide?
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Very Rapid Reaction coming off Budesonide?
If you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!
Anne,
My experience with tapering the budesonide and experiencing a flare after, was that I needed to go up to a max dose (9mg) for the D to stop. The lower dose did not have any effect for me, however, you may have time to experiment with the lower dose and see what happens. Everyone responds a little different to the medication.
My experience with tapering the budesonide and experiencing a flare after, was that I needed to go up to a max dose (9mg) for the D to stop. The lower dose did not have any effect for me, however, you may have time to experiment with the lower dose and see what happens. Everyone responds a little different to the medication.
Donna
Diagnosed with CC August 2011
Diagnosed with CC August 2011
Hi Anne,
I'm sorry you're having a relapse, and I hope that you can re-establish control soon. Is there any chance that you might have caught an intestinal virus? If not, then my guess is that this may be due to a combination of things — doing a gluten challenge just before discontinuing treatment with budesonide. That was not a good time to do a gluten challenge, IMO. A better time would have been about 3 or 4 months down the road.
The problem is that discontinuing a budesonide treatment appears to cause a mast cell rebound effect, resulting in a temporary state of increased mast cell degranulation. A gluten challenge also results in an increase in mast cell degranulation, and in addition it causes physical damage (on a microscopic basis) to the mucosa of the intestines, due to increased lymphocyte infiltration.
There is also the possibility that this reaction means that you have additional food sensitivities that may have been masked by the budesonode. Time will tell which scenario is the correct one, but in the meantime, the goal is to reclaim remission as quickly as possible. Donna is right on target with her suggestion for the dosage rate. Most members who have found themselves in your position have discovered that unless they are willing to wait a considerable amount of time for remission to return, the most effective remedy is to return to a full dose of budesonide until symptoms have resolved, and after allowing sufficient time for some healing, begin the dosage tapering again.
I hope you can get back on track quickly. Have you tried Imodium (loperamide)? Many members have found that by taking loperamide, as needed, they can at least postpone trips to the bathroom long enough to be able to get out and about long enough to manage a limited schedule.
Tex
I'm sorry you're having a relapse, and I hope that you can re-establish control soon. Is there any chance that you might have caught an intestinal virus? If not, then my guess is that this may be due to a combination of things — doing a gluten challenge just before discontinuing treatment with budesonide. That was not a good time to do a gluten challenge, IMO. A better time would have been about 3 or 4 months down the road.
The problem is that discontinuing a budesonide treatment appears to cause a mast cell rebound effect, resulting in a temporary state of increased mast cell degranulation. A gluten challenge also results in an increase in mast cell degranulation, and in addition it causes physical damage (on a microscopic basis) to the mucosa of the intestines, due to increased lymphocyte infiltration.
There is also the possibility that this reaction means that you have additional food sensitivities that may have been masked by the budesonode. Time will tell which scenario is the correct one, but in the meantime, the goal is to reclaim remission as quickly as possible. Donna is right on target with her suggestion for the dosage rate. Most members who have found themselves in your position have discovered that unless they are willing to wait a considerable amount of time for remission to return, the most effective remedy is to return to a full dose of budesonide until symptoms have resolved, and after allowing sufficient time for some healing, begin the dosage tapering again.
I hope you can get back on track quickly. Have you tried Imodium (loperamide)? Many members have found that by taking loperamide, as needed, they can at least postpone trips to the bathroom long enough to be able to get out and about long enough to manage a limited schedule.
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.
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi Tex,
Yeah I took some Imodium which got me out the bathroom and into work! I don't think it is a virus - but I guess I will have to see. how I go tomorrow! I have been reducing the budesonide over the last two months so this morning was a shocker as it is only Day 2 off completely! If things are no better tomorrow I will go back on to 3mg and see if that can nudge me back in the right direction. I have spent the day rehydrating and have eaten now as well so I am feeling better than this morning although still wiped out! You forget how awful this makes you feel when you have been so well for such a long time!
Anne
Yeah I took some Imodium which got me out the bathroom and into work! I don't think it is a virus - but I guess I will have to see. how I go tomorrow! I have been reducing the budesonide over the last two months so this morning was a shocker as it is only Day 2 off completely! If things are no better tomorrow I will go back on to 3mg and see if that can nudge me back in the right direction. I have spent the day rehydrating and have eaten now as well so I am feeling better than this morning although still wiped out! You forget how awful this makes you feel when you have been so well for such a long time!
AnneIf you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!
I agree with both Donna and Tex. Rarely was I able to get control again after using just one pill a day. But the good news is that increasing to three pills was only needed for a few days. Then I could go back to two a day, etc. It's always a good idea to take a long time to reduce the dosage from two to one, IMO, and then from one to being off of it completely. That allows you to determine which additional foods, if any, need to be eliminated at the lower dosages.
Good luck! I hope you can get control of this flare quickly.
Gloria
Good luck! I hope you can get control of this flare quickly.
Gloria
You never know what you can do until you have to do it.