Hello. My Mom has had a recurrence of her CC. Back in 2014, she got a pretty good remission that lasted pretty much almost 5 years after being on Budesonide. This time, we nipped it almost as soon as it started happening again, and the Dr. put her right back on. Took less than a week for symptoms to subside. Now, we are down to 3mg/day for a month, to be followed by 3 mg ever other day for a month, then we will stop.
My Mom is 96, she lives alone (although a half-hour from me and I was able to help her this last relapse each time it happened), but she is nervous about it coming back once she comes off the Budesonide.
For those of you who have had success with Budesonide, but had a recurrence once taken off ... what was the course of your "return of symptoms"? Did you immediately have explosive diarrhea without warning? Or did you first kind of get some warning signals like increased gassiness, some leakage into underwear/panties, etc? I know it's a graphic question, but I'm trying to figure out how I can prepare my Mom to detect indications that it may be coming back ... so she can let me know and we can let the doctor know asap.
Many thanks.
Larry
Discontinuing Budesonide
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Discontinuing Budesonide
Larry
Larry,
Your Mom is 96 and on budesonide? The budesonide works pretty well for her? Does she have any side effects?
If budesonide works and she does not have side effects there is a case to stay on a very low dose until death.
Low dose would be the lowest dose that provides effectiveness for her. Dose could be 3 mg every day, or 3 mg
every other day, or 3 mg every third day for example.
I would consider talking to her doctor about a maintenance dose rather than worrying about symptoms that start up.
Typically maintenance dose is not recommended for younger folks for a number of reasons but at 96 I'd consider
a maintenance dose to get quality of life.
I live in Florida and we have a lot of 106 year olds. Even if she lived for another 10 years I'd consider it for
a maintenance dose to get quality of life.
Your Mom is 96 and on budesonide? The budesonide works pretty well for her? Does she have any side effects?
If budesonide works and she does not have side effects there is a case to stay on a very low dose until death.
Low dose would be the lowest dose that provides effectiveness for her. Dose could be 3 mg every day, or 3 mg
every other day, or 3 mg every third day for example.
I would consider talking to her doctor about a maintenance dose rather than worrying about symptoms that start up.
Typically maintenance dose is not recommended for younger folks for a number of reasons but at 96 I'd consider
a maintenance dose to get quality of life.
I live in Florida and we have a lot of 106 year olds. Even if she lived for another 10 years I'd consider it for
a maintenance dose to get quality of life.
It's a thought, and it has been mentioned. But better not to be on it, then to be on it indefinitely. She resists taking any medications, and while we're not sure ... she does claim to be having some side effects from 9mg/day. Bottom line is we are going to try to come off it first. Then, if she relapses, we'll go back on and use it for maintenance.brandy wrote:Larry,
Your Mom is 96 and on budesonide? The budesonide works pretty well for her? Does she have any side effects?
If budesonide works and she does not have side effects there is a case to stay on a very low dose until death.
Low dose would be the lowest dose that provides effectiveness for her. Dose could be 3 mg every day, or 3 mg
every other day, or 3 mg every third day for example.
I would consider talking to her doctor about a maintenance dose rather than worrying about symptoms that start up.
Typically maintenance dose is not recommended for younger folks for a number of reasons but at 96 I'd consider
a maintenance dose to get quality of life.
I live in Florida and we have a lot of 106 year olds. Even if she lived for another 10 years I'd consider it for
a maintenance dose to get quality of life.
My question was more to try to help address her fear of relapse after coming off Budesonide. It is a daunting thought to have to "deal" with a full blown attack (and the aftermath ... if you know what I mean) by yourself. I was hoping to be able to reassure her that if she started to relapse, she would begin to see more "gradual" indications.
Many thanks for your response!
Larry
Larry
Hi Larry, how did she titrate off of Budesonide the first time (in 2015) when she was 91? I don’t know that there’s much to say other than she’s done it before while in her 90s and there’s no reason to think she can’t titrate again with success. You could go 3 mg every third day and extend the titration out more if you and she are feeling uneasy after a month of 3mg every other day.
Flares are not predictable but usually what people describe is that diarrhea can show up abruptly. I would think there would be some gurgling and uneasiness first.
I agree with the idea of continuing with a maintenance dose if she doesn’t maintain well once she’s off of Budesonide. There’s no reason to suffer if 3 mg every day or every other day is helpful.
Best wishes,
Carol
Flares are not predictable but usually what people describe is that diarrhea can show up abruptly. I would think there would be some gurgling and uneasiness first.
I agree with the idea of continuing with a maintenance dose if she doesn’t maintain well once she’s off of Budesonide. There’s no reason to suffer if 3 mg every day or every other day is helpful.
Best wishes,
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
To be honest, I know she was titered off back in 2015, but I don't recall exactly how. Yes, she's done it before ... and she did get a 5 year remission out of it. When it started to show indications of coming back within the past year, it first started as what I would call "small" incidents of staining or soiling of undergarments with increased gassiness/gurgling... and this happened every so often ... until she started having a few more major "incidents" that required a more major cleanup (if you know what I'm saying). That's when we got her back in to see the gastroenterologist and he immediately put her back on Budesonide ... and within I'd say 3-5 days ... things were basically back under control. This time, since he knew what it was and didn't require a prolonged period of diagnostic effort, it didn't have a chance to reach the point it did back in 2014 where there were 3-6 major/"explosive" incidents each day.carolm wrote:Hi Larry, how did she titrate off of Budesonide the first time (in 2015) when she was 91? I don’t know that there’s much to say other than she’s done it before while in her 90s and there’s no reason to think she can’t titrate again with success. You could go 3 mg every third day and extend the titration out more if you and she are feeling uneasy after a month of 3mg every other day.
Flares are not predictable but usually what people describe is that diarrhea can show up abruptly. I would think there would be some gurgling and uneasiness first.
I agree with the idea of continuing with a maintenance dose if she doesn’t maintain well once she’s off of Budesonide. There’s no reason to suffer if 3 mg every day or every other day is helpful.
Best wishes,
Carol
So if she follows the same pattern, we'll know what to look for. If.
And yes, in the end, she may need 3mg/day or every 2nd or 3rd day as a maintenance dose.
Thank you.
Larry
Larry,
Please don't think we're "pushing drugs" here, but there's a very good reason why Brandy and Carol are suggesting that she might want to remain on a low maintenance dose of budesonide. FWIW, we have more than a few members here who find it necessary to remain on a small maintenance dose of budesonide in order to prevent recurring relapses. At those low rates, no one has ever reported having any issues due to the budesonide (not even worsening osteoporosis), and some members have been on that dose for many years.
The problem with stopping a corticosteroid treatment and restarting it again is that the corticosteroid (whether it's budesonide or some other glucocorticoid) becomes less effective each time it is restarted. Eventually, it will lose it's effectiveness. This is proven by published research, and we've seen it among members here, sometimes after only a few restarts. This is why (especially for older patients who are less able to tolerate having to deal with the consequences of a full-fledged flare for the rest of their lives) often find it much more practical to remain on a low maintenance dose of budesonide, to eliminate that risk.
More than a few members here can attest to the fact that it can be very difficult to resolve a flare. The emotional symptoms can be worse than the physical symptoms, and the physical symptoms can be debilitating — they will dominate one's life. Quality of life disappears. It's much easier to prevent flares in the first place than to try to resolve them.
The two of you know her situation much better than anyone, so please make your decision based on her situation, rather than on our advice. This information is offered so that hopefully, you will be able to make a very informed choice.
The best of luck to both your mother and you.
Tex
Please don't think we're "pushing drugs" here, but there's a very good reason why Brandy and Carol are suggesting that she might want to remain on a low maintenance dose of budesonide. FWIW, we have more than a few members here who find it necessary to remain on a small maintenance dose of budesonide in order to prevent recurring relapses. At those low rates, no one has ever reported having any issues due to the budesonide (not even worsening osteoporosis), and some members have been on that dose for many years.
The problem with stopping a corticosteroid treatment and restarting it again is that the corticosteroid (whether it's budesonide or some other glucocorticoid) becomes less effective each time it is restarted. Eventually, it will lose it's effectiveness. This is proven by published research, and we've seen it among members here, sometimes after only a few restarts. This is why (especially for older patients who are less able to tolerate having to deal with the consequences of a full-fledged flare for the rest of their lives) often find it much more practical to remain on a low maintenance dose of budesonide, to eliminate that risk.
More than a few members here can attest to the fact that it can be very difficult to resolve a flare. The emotional symptoms can be worse than the physical symptoms, and the physical symptoms can be debilitating — they will dominate one's life. Quality of life disappears. It's much easier to prevent flares in the first place than to try to resolve them.
The two of you know her situation much better than anyone, so please make your decision based on her situation, rather than on our advice. This information is offered so that hopefully, you will be able to make a very informed choice.
The best of luck to both your mother and you.
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.
Thank you, Tex.tex wrote:Larry,
Please don't think we're "pushing drugs" here, but there's a very good reason why Brandy and Carol are suggesting that she might want to remain on a low maintenance dose of budesonide. FWIW, we have more than a few members here who find it necessary to remain on a small maintenance dose of budesonide in order to prevent recurring relapses. At those low rates, no one has ever reported having any issues due to the budesonide (not even worsening osteoporosis), and some members have been on that dose for many years.
The problem with stopping a corticosteroid treatment and restarting it again is that the corticosteroid (whether it's budesonide or some other glucocorticoid) becomes less effective each time it is restarted. Eventually, it will lose it's effectiveness. This is proven by published research, and we've seen it among members here, sometimes after only a few restarts. This is why (especially for older patients who are less able to tolerate having to deal with the consequences of a full-fledged flare for the rest of their lives) often find it much more practical to remain on a low maintenance dose of budesonide, to eliminate that risk.
More than a few members here can attest to the fact that it can be very difficult to resolve a flare. The emotional symptoms can be worse than the physical symptoms, and the physical symptoms can be debilitating — they will dominate one's life. Quality of life disappears. It's much easier to prevent flares in the first place than to try to resolve them.
The two of you know her situation much better than anyone, so please make your decision based on her situation, rather than on our advice. This information is offered so that hopefully, you will be able to make a very informed choice.
The best of luck to both your mother and you.
Tex
I understand what you are saying. Although I've not heard until now of corticosteroids becoming less and less effective the more you stop and restart them. I'll have to ask the gastro about that. The issue is she fights taking any medications at all ... always insisting that they are causing side effects that she can't tolerate. And Budesonide hasn't been any different.
Right now, we are on 3mg per day until beginning of December, then on 3mg every other day for a month. I'll definitely discuss it with her. Thanks for your help!
Larry
Larry,
I may have lied to you. When I went to my book to find a medical reference on the diminishing effectiveness of corticosteroids with repeated stopping and restarting of treatments, I didn't find one listed there. That has definitely been the experience of our members who have used it, however. And your gastroenterologist should be aware of that, because it's common knowledge that prednisone loses effectiveness each time it's represcribed. Doctors usually get around that (to some extent) by prescribing a larger dose with succeeding treatments. But that eventually leads to Draconian side effects. Concepts that are common knowledge to doctors are almost always just assumed to be true, and they're never verified by medical research.
Still, the fact that she resists taking medications imposes a very strong case against using a maintenance dose. From that viewpoint, your argument makes much more sense. Forced medication is no fun, either.
Tex
I may have lied to you. When I went to my book to find a medical reference on the diminishing effectiveness of corticosteroids with repeated stopping and restarting of treatments, I didn't find one listed there. That has definitely been the experience of our members who have used it, however. And your gastroenterologist should be aware of that, because it's common knowledge that prednisone loses effectiveness each time it's represcribed. Doctors usually get around that (to some extent) by prescribing a larger dose with succeeding treatments. But that eventually leads to Draconian side effects. Concepts that are common knowledge to doctors are almost always just assumed to be true, and they're never verified by medical research.
Still, the fact that she resists taking medications imposes a very strong case against using a maintenance dose. From that viewpoint, your argument makes much more sense. Forced medication is no fun, either.
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.
Well, OK ... thank you. I'll still ask the doctor. And if he concurs, I will at least make the case to my Mom. Thanks again.tex wrote:Larry,
I may have lied to you. When I went to my book to find a medical reference on the diminishing effectiveness of corticosteroids with repeated stopping and restarting of treatments, I didn't find one listed there. That has definitely been the experience of our members who have used it, however. And your gastroenterologist should be aware of that, because it's common knowledge that prednisone loses effectiveness each time it's represcribed. Doctors usually get around that (to some extent) by prescribing a larger dose with succeeding treatments. But that eventually leads to Draconian side effects. Concepts that are common knowledge to doctors are almost always just assumed to be true, and they're never verified by medical research.
Still, the fact that she resists taking medications imposes a very strong case against using a maintenance dose. From that viewpoint, your argument makes much more sense. Forced medication is no fun, either.
Tex
Larry
Hi Larry,
If she decides to come off the budesonide we find a long slow taper reduces the risk of relapse.
example: month 3 --1 pill every day month 4--1 pill every other day and month 5 1 pill every third
day then stop. This is just an example of a taper.
If your Mom wants to get off of it (believe me I get it, plus she was successful once in getting off so
should be successful again) talk to Mom and Mom's doc about long slow taper.
If she decides to come off the budesonide we find a long slow taper reduces the risk of relapse.
example: month 3 --1 pill every day month 4--1 pill every other day and month 5 1 pill every third
day then stop. This is just an example of a taper.
If your Mom wants to get off of it (believe me I get it, plus she was successful once in getting off so
should be successful again) talk to Mom and Mom's doc about long slow taper.