I have been on Budesonide for 5 weeks now. It has helped with urgency and number of BM's....but never "norman". The consistency differs with every BM from WD, grit, mud, etc. (some of them I can't describe).
I think it's time to get off of the med and have searched the Archives for help, but haven't found the info needed. I know the next step is to go to 2 a day....but for how long....and then what? Any help would be greatly appreciated.
My internal med doc has set up an appt. with a GI specialist for next week and I have no idea what to expect. I am just so thankful for this site, so I can be better informed at my visit.
Thank you,
Terre
Weaning off Budesonide
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi!
I am new here but have reading this forum for a while...I have that prescription took it for a couple of months it really did not even "work" consistently so it felt like a waste which is what I knew before I took it. I mean, I knew it was going to be a waste of time, I did not know just how little it would help, although I suppose it brought some relief.
However, I had to leave for a 6 month relocation and at the last minute, I filled the prescription bc I needed masking..I needed anything bc I am in the midst of something that I needed to do...
Much of my year has been spent reading articles and this forum.
For one thing, if I were you, I would take Zyrtec or Claritin etc since the articles show that it can be helpful. This is the H1 type? But the H2 type like Zantac, that one I will not take bc I believe I will be left unable to digest. I have to grasp this better to be sure I am right about it but for now I am leaving it alone. The article indicates that a combination of these two types of antihistamines can be helpful in dealing with the histamine attack that creates the inflammation
Eating clean and simple foods that you can tolerate can be a start... I would only eat one ingredient at a time. I can eat sweet potatoes for example so that is a meal...I think I can eat organic eggs so I eat those...I have noticed the HUGE variation in what people on this board can eat-It is mind boggling to me!
Talk to you soon!
I am new here but have reading this forum for a while...I have that prescription took it for a couple of months it really did not even "work" consistently so it felt like a waste which is what I knew before I took it. I mean, I knew it was going to be a waste of time, I did not know just how little it would help, although I suppose it brought some relief.
However, I had to leave for a 6 month relocation and at the last minute, I filled the prescription bc I needed masking..I needed anything bc I am in the midst of something that I needed to do...
Much of my year has been spent reading articles and this forum.
For one thing, if I were you, I would take Zyrtec or Claritin etc since the articles show that it can be helpful. This is the H1 type? But the H2 type like Zantac, that one I will not take bc I believe I will be left unable to digest. I have to grasp this better to be sure I am right about it but for now I am leaving it alone. The article indicates that a combination of these two types of antihistamines can be helpful in dealing with the histamine attack that creates the inflammation
Eating clean and simple foods that you can tolerate can be a start... I would only eat one ingredient at a time. I can eat sweet potatoes for example so that is a meal...I think I can eat organic eggs so I eat those...I have noticed the HUGE variation in what people on this board can eat-It is mind boggling to me!
Talk to you soon!
My favorite line from the movie Galaxy Quest "Never Give Up!"
Terre,
The very slow tapering process that most members follow is done after they are in remission. If you are not yet in remission that suggests that something in your diet is preventing it. If that's the case then there is a very good chance that as you taper off the medication, your symptoms will return, regardless of how slowly you taper the dose. Nevertheless, here is a brief description of the tapering program that seems to work the best for most members here.
Many members remain on a dose until they develop the signs of constipation and then they reduce the dose to the next level until they get down to 1 capsule (3 mg) per day. After reducing the dose to 1 capsule per day, some members here stay on that dose for 2 weeks, while others continue for up to 4 weeks. And they follow the same general pattern as they continue to lower the dose, to 1 capsule every other day, then 1 every third day, and some go to 1 every fourth day. Others continue to taper to 5 or even 6 day intervals, especially if they have had problems withdrawing from budesonide successfully in the past. We all have different responses to medications and healing progress, so as Gabes says, we have to kind of listen to what our body is telling us, and modify our treatment program accordingly, as needed. In general, slower is better, but there's no way to be sure what is optimal in every case.
I hope that this is helpful.
Tex
The very slow tapering process that most members follow is done after they are in remission. If you are not yet in remission that suggests that something in your diet is preventing it. If that's the case then there is a very good chance that as you taper off the medication, your symptoms will return, regardless of how slowly you taper the dose. Nevertheless, here is a brief description of the tapering program that seems to work the best for most members here.
Many members remain on a dose until they develop the signs of constipation and then they reduce the dose to the next level until they get down to 1 capsule (3 mg) per day. After reducing the dose to 1 capsule per day, some members here stay on that dose for 2 weeks, while others continue for up to 4 weeks. And they follow the same general pattern as they continue to lower the dose, to 1 capsule every other day, then 1 every third day, and some go to 1 every fourth day. Others continue to taper to 5 or even 6 day intervals, especially if they have had problems withdrawing from budesonide successfully in the past. We all have different responses to medications and healing progress, so as Gabes says, we have to kind of listen to what our body is telling us, and modify our treatment program accordingly, as needed. In general, slower is better, but there's no way to be sure what is optimal in every case.
I hope that this is helpful.
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.
Hi Wannab,
Welcome to our Internet forum. It sounds as though you are on the right track to get your health back. You are quite correct that H2 blockers will suppress the production of gastric acid and therefore compromise digestion, in some cases enough to be a problem. H2 blockers are not as potent as PPIs, and their effect only lasts for a few hours, whereas PPIs suppress the production of stomach acid for roughly 3 days. Still, digestive conditions vary so significantly among MC patients that it's difficult to predict which medications may be useful and which ones may be detrimental in many cases.
As you continue to read, I hope that you will be able to continue to fine tune your diet until it is the best that it can be to ensure that you will have good long-term health.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome to our Internet forum. It sounds as though you are on the right track to get your health back. You are quite correct that H2 blockers will suppress the production of gastric acid and therefore compromise digestion, in some cases enough to be a problem. H2 blockers are not as potent as PPIs, and their effect only lasts for a few hours, whereas PPIs suppress the production of stomach acid for roughly 3 days. Still, digestive conditions vary so significantly among MC patients that it's difficult to predict which medications may be useful and which ones may be detrimental in many cases.
As you continue to read, I hope that you will be able to continue to fine tune your diet until it is the best that it can be to ensure that you will have good long-term health.
Again, welcome aboard, and please feel free to ask anything.
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.
Hi Terre,
Is there a reason you want to step down now? From 3 pills to 2? If you still get WD occasionally suggest stay with 3 pills for awhile until you no longer get WD. If you have side effects, yes, then I understand the desire to step down. I stepped down when I had solid stool for two weeks straight then two days of constipation. My concern is if you step down too soon, i.e. still getting WD then you will have to go back to three pills if WD persists.
We're all different.
If you have troubling side effects I'd probably want to see MC mud for at least 14 days with no WD before stepping down to 2 pills but I think most users have solid formed stool before stepping down.
Use your body as a guide for the step downs rather than an arbitrary date.
Hopefully this provides some insight.
Is there a reason you want to step down now? From 3 pills to 2? If you still get WD occasionally suggest stay with 3 pills for awhile until you no longer get WD. If you have side effects, yes, then I understand the desire to step down. I stepped down when I had solid stool for two weeks straight then two days of constipation. My concern is if you step down too soon, i.e. still getting WD then you will have to go back to three pills if WD persists.
We're all different.
If you have troubling side effects I'd probably want to see MC mud for at least 14 days with no WD before stepping down to 2 pills but I think most users have solid formed stool before stepping down.
Use your body as a guide for the step downs rather than an arbitrary date.
Hopefully this provides some insight.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Agree with Brandy - listen to your bodyIf you have troubling side effects I'd probably want to see MC mud for at least 14 days with no WD before stepping down to 2 pills but I think most users have solid formed stool before stepping down.
Use your body as a guide for the step downs rather than an arbitrary date.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I'm in the same boat.
My doc has me on a quick wean of Budesonide - 2 weeks at 9 mg then 1 week at 6 then 1 week at 3mg then done. No way that's gonna suffice.
I really don't want to be on it though so I am considering trying to go back to the Balsalazide?
I just need to get into remission so the diet can take over.
Thoughts anyone???
My doc has me on a quick wean of Budesonide - 2 weeks at 9 mg then 1 week at 6 then 1 week at 3mg then done. No way that's gonna suffice.
I really don't want to be on it though so I am considering trying to go back to the Balsalazide?
I just need to get into remission so the diet can take over.
Thoughts anyone???
Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
there is no quick fix in MC world......I just need to get into remission so the diet can take over.
Thoughts anyone???
sticking with the bland safe diet, giving the body time to heal (ie at least 6 weeks, 3 months is the ideal) and minimising stress are you best options for a good remission...
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
I'm not expecting a quick fix, that's why I'm concerned about the short budesonide regimen.
I don't want to stay on budesonide though so I was wondering what experienced MCer's thoughts are on going back to the balsalazide? I have no idea what to do. I am on the restricted diet, that's no big deal. I just need to know what med to stay on to keep the bm's under 10 until I do get in remission.
Right now as long as there are no flare ups the budesonide and balsalazide work about the same - around 7 bm's a day. With my history of kidney failure neither drug is good for me but I think the lesser of 2 evils is probably the balsalazide. With my Thalassemia and already weakened immune system I think the budesonide is not a good drug choice for me.
In all honesty I'd like to see what happens on nothing and just maintaining my diet. I may just do that. Can't hurt and I always carry my Cholestyramine powder and Immodium and Pepto lol. I don't take them all but I carry them all lol.
I don't want to stay on budesonide though so I was wondering what experienced MCer's thoughts are on going back to the balsalazide? I have no idea what to do. I am on the restricted diet, that's no big deal. I just need to know what med to stay on to keep the bm's under 10 until I do get in remission.
Right now as long as there are no flare ups the budesonide and balsalazide work about the same - around 7 bm's a day. With my history of kidney failure neither drug is good for me but I think the lesser of 2 evils is probably the balsalazide. With my Thalassemia and already weakened immune system I think the budesonide is not a good drug choice for me.
In all honesty I'd like to see what happens on nothing and just maintaining my diet. I may just do that. Can't hurt and I always carry my Cholestyramine powder and Immodium and Pepto lol. I don't take them all but I carry them all lol.
Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Becky
in your current situation and case mix of stuff - making a medication change may not be the best thing.
it will be hard to know if the medication or the diet changes are helping or hindering. We do recommend not making too many changes / additions at once as a) our sensitive bodies will react and b) it makes it harder to know what caused the issue..
not sure if it was discussed in your main post - but there is no MC medication that works for everybody. that is one of the sucky parts of MC. what works great for one, can cause total chaos for another. swapping and changing could make things worse. With your keenness to minimise medication intake, focussing on figuring out your safe ingredients and sticking with them is best long term option.
best way to see discussions on meds and how people went on them is using the search function..
in your current situation and case mix of stuff - making a medication change may not be the best thing.
it will be hard to know if the medication or the diet changes are helping or hindering. We do recommend not making too many changes / additions at once as a) our sensitive bodies will react and b) it makes it harder to know what caused the issue..
not sure if it was discussed in your main post - but there is no MC medication that works for everybody. that is one of the sucky parts of MC. what works great for one, can cause total chaos for another. swapping and changing could make things worse. With your keenness to minimise medication intake, focussing on figuring out your safe ingredients and sticking with them is best long term option.
best way to see discussions on meds and how people went on them is using the search function..
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Right, but my Doc doesn't plan to leave me on the budesonide. That's just it, it's the doc changing me around and I want to stay on one thing. We went from the powder to the Balsalazide to the Budesonide. I don't like any of them but if I have to pick one I want to pick the right one. That's where you come in :) I know you can't give medical advice but you have "seen" things. I have worked in the veterinary field since 1991, I have "seen" things, I give advice to my friends based on what I've seen :)
I was hoping with your help I can figure out which medicine is safer for me and request that one to be refilled. He isn't planning to leave me on budesonide long term. The budesonide treatment plan he gave me was for 1 month. That's the thing, he is the one switching me around from med to med. I just want to stay on one. Everyone is worried about my kidneys and me ending up back on dialysis. None of the meds for MC is a good option for me. My plan is to stay on the diet road and wait for my body to heal. But I feel like I am going to need a med to at least keep things calm enough to let that happen. Do you see what I mean? I wish we could talk by phone. I'm afraid I'm not coming across correctly.
The 2 pills seem to work about the same. Still too many stools a day (around 7) but at least not watery D. The powder I was never able to master a happy medium that didn't make me constipated. I am not one that likes to go days without a BM lol. I have figured out that I have a gluten sensitivity so now I can make sure I stay away from gluten and that should limit the flares. I feel like I have a much better handle on it now. The diet is a breeze. I don't like that I have to cut out raw fruits and veggies/salads but such is life, I'll get over it. Now I wait. :) I need to schedule a recheck with the gastro doc soon and that is why I am trying to figure out what med to discuss with him and was hoping for input here to figure out what to ask for. I think I want off the budesonide. I know that very little budesonide is processed through the kidneys but why take chances on kidneys that are already compromised. I just don't know how dangerous balsalazide is. Maybe I'll go searching the web.
I'm not the only one in my family to have suffered multiple, crazy, off the wall medical issues. I understand it takes time to fix things and I am not trying to rush something I have no control over. I have come to terms with it. Just like being on dialysis. It's not like I had a choice then and I don't have a choice now. I watched my mother's doctor heal her gut with food and I know it will happen for me too, this happened to me b/c of medications. I have poor health and am always on meds. I am always going to have flares too and I'll have to live with that, I'll cross those bridges too. Just like the doc giving me a supplement with FIBER in it this last week lol. He is going to have to research my new issue too. That was my fault tho, I should have checked the ingredients first lol.
Hope you have a happy Monday
I have lots of
to play with here ... 8 to be exact 
I was hoping with your help I can figure out which medicine is safer for me and request that one to be refilled. He isn't planning to leave me on budesonide long term. The budesonide treatment plan he gave me was for 1 month. That's the thing, he is the one switching me around from med to med. I just want to stay on one. Everyone is worried about my kidneys and me ending up back on dialysis. None of the meds for MC is a good option for me. My plan is to stay on the diet road and wait for my body to heal. But I feel like I am going to need a med to at least keep things calm enough to let that happen. Do you see what I mean? I wish we could talk by phone. I'm afraid I'm not coming across correctly.
The 2 pills seem to work about the same. Still too many stools a day (around 7) but at least not watery D. The powder I was never able to master a happy medium that didn't make me constipated. I am not one that likes to go days without a BM lol. I have figured out that I have a gluten sensitivity so now I can make sure I stay away from gluten and that should limit the flares. I feel like I have a much better handle on it now. The diet is a breeze. I don't like that I have to cut out raw fruits and veggies/salads but such is life, I'll get over it. Now I wait. :) I need to schedule a recheck with the gastro doc soon and that is why I am trying to figure out what med to discuss with him and was hoping for input here to figure out what to ask for. I think I want off the budesonide. I know that very little budesonide is processed through the kidneys but why take chances on kidneys that are already compromised. I just don't know how dangerous balsalazide is. Maybe I'll go searching the web.
I'm not the only one in my family to have suffered multiple, crazy, off the wall medical issues. I understand it takes time to fix things and I am not trying to rush something I have no control over. I have come to terms with it. Just like being on dialysis. It's not like I had a choice then and I don't have a choice now. I watched my mother's doctor heal her gut with food and I know it will happen for me too, this happened to me b/c of medications. I have poor health and am always on meds. I am always going to have flares too and I'll have to live with that, I'll cross those bridges too. Just like the doc giving me a supplement with FIBER in it this last week lol. He is going to have to research my new issue too. That was my fault tho, I should have checked the ingredients first lol.
Hope you have a happy Monday
I have lots of
to play with here ... 8 to be exact Becky
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
Diagnosed Microscopic Lymphocytic Colitis 4/2016
DF, SF
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Becky
monday is over for us in Aus... we are into Tuesday..
Based on what we have seen, a medication that works really well for one person, can cause total chaos for another.
we cant provide science or a reason why that it is.
we also know, is that any medication has limited scope of providing full remission if the person still has too many triggers causing inflammation, especially if they are low in Vit D3 etc achieving remission can be harder and take longer for those with multiple health issues
There are a few here, that despite the strictest blandest diet for years, and trying every medication option, do not achieve full remission.
alot of people that have achieved remission do not visit the board as often. to get feedback on medication options, using the search function and reading previous discussions is your best option.
there are some articles that discuss the effectiveness of longer use of budenside - would this help sway the doctor/specialist?
http://www.perskyfarms.com/phpBB2/viewt ... =treatment
http://www.perskyfarms.com/phpBB2/viewt ... =treatment
monday is over for us in Aus... we are into Tuesday..
Based on what we have seen, a medication that works really well for one person, can cause total chaos for another.
we cant provide science or a reason why that it is.
we also know, is that any medication has limited scope of providing full remission if the person still has too many triggers causing inflammation, especially if they are low in Vit D3 etc achieving remission can be harder and take longer for those with multiple health issues
There are a few here, that despite the strictest blandest diet for years, and trying every medication option, do not achieve full remission.
alot of people that have achieved remission do not visit the board as often. to get feedback on medication options, using the search function and reading previous discussions is your best option.
there are some articles that discuss the effectiveness of longer use of budenside - would this help sway the doctor/specialist?
http://www.perskyfarms.com/phpBB2/viewt ... =treatment
http://www.perskyfarms.com/phpBB2/viewt ... =treatment
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Becky,
Based on what I have seen in the experiences of members here, Budesonide is the most effective, fastest-acting drug option for treating MC. For long-term use, as long as the patient takes plenty of magnesium and vitamin A, the main risk, osteoporosis, is minimal. Corticosteroids cause osteoporosis by depleting both magnesium and vitamin A, and that compromises the ability of the body to utilize calcium in the bloodstream for building bone tissue. We have to take well above the RDA for magnesium and vitamin D when we are taking a corticosteroid in order to prevent osteoporosis from developing or becoming worse.
On balance (comparing benefits with negative effects), corticosteroids may be neutral to helpful for kidney function, whereas mesalamine (aka 5-aminosalicylic acid), the active ingredient in Balsalazide, tends to show more potential for negative effects. However, this effect is time and dose dependent. This suggests that budesonide may be safer (in terms of kidney risks) than Balasalazide (or any other brand of mesalamine) if long-term treatment is used. Over the short term however, there's no clear difference in risks.
At the link below, you should be able to find everything you might want to know about the physiological effects of taking a corticosteroid.
And the article at the link below discusses research on the effects on kidney function due to the use of mesalamine use by IBD patients.
If you are leaning toward budesonide, then this should support your choice when you see your doctor. And I believe that I have already posted a link to a medical reference showing that budesonide is safe for long-term use for treating MC. If you can't find that link, please let me know and I'll repost it for you.
Tex
Based on what I have seen in the experiences of members here, Budesonide is the most effective, fastest-acting drug option for treating MC. For long-term use, as long as the patient takes plenty of magnesium and vitamin A, the main risk, osteoporosis, is minimal. Corticosteroids cause osteoporosis by depleting both magnesium and vitamin A, and that compromises the ability of the body to utilize calcium in the bloodstream for building bone tissue. We have to take well above the RDA for magnesium and vitamin D when we are taking a corticosteroid in order to prevent osteoporosis from developing or becoming worse.
On balance (comparing benefits with negative effects), corticosteroids may be neutral to helpful for kidney function, whereas mesalamine (aka 5-aminosalicylic acid), the active ingredient in Balsalazide, tends to show more potential for negative effects. However, this effect is time and dose dependent. This suggests that budesonide may be safer (in terms of kidney risks) than Balasalazide (or any other brand of mesalamine) if long-term treatment is used. Over the short term however, there's no clear difference in risks.
At the link below, you should be able to find everything you might want to know about the physiological effects of taking a corticosteroid.
Physiologic and Pharmacologic Effects of CorticosteroidsGlucocorticoid effects on the kidney differ from mineralocorticoid effects. Glucocorticoids increase water diuresis, glomerular filtration rate, and renal plasma flow. Although increases in sodium retention and potassium excretion occur with cortisol, there seems to be no increase in hydrogen excretion. The major renal complications of glucocorticoid therapy are nephrocalcinosis, nephrolithiasis, and increased stone formation as a result of increased urinary calcium and uric acid.42
And the article at the link below discusses research on the effects on kidney function due to the use of mesalamine use by IBD patients.
Renal effects of long-term treatment with 5-aminosalicylic acidDISCUSSION
The aim of the present study was to detect changes in renal function, as measured by the CrCl rate over time, in IBD patients treated with 5-ASA. The results show that subtle deterioration in renal function occurred in these patients over the observation period. Clinical disease due to interstitial nephritis occurred only in one of these patients.
The present study is the first to show that the risk of renal impairment was related to treatment duration and dose of 5-ASA. Patients were followed for a mean of 20 years and treated with 5-ASA for a mean of 8.4 years with variable degrees of cumulative exposure.
If you are leaning toward budesonide, then this should support your choice when you see your doctor. And I believe that I have already posted a link to a medical reference showing that budesonide is safe for long-term use for treating MC. If you can't find that link, please let me know and I'll repost it for 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.