I have been on Budesonide 9 mg for 2.5 months now and my symptoms have somewhat improved (went from WD once a day now to loose stools once a day) but have had WD episodes 3 times since being on it, including today. I went to see a new GI doctor yesterday and he told me to stay on the 9 mg for at least another 2 months, even if I get better. He said it is safe to be on the high dose for up to 6 months. Does this sound correct? This contradicts what my prior NP said - That she originally only wanted me on 9 mg for one month and said it's better to be on it as short a time as possible.
Is there any dangers to being on the 9 mg of Budesonide for 5-6 months? Does it affect your adrenal glands? Any complications for females (especially regarding hormones)? Has anyone else been on it for that long?
I also asked him if I should stay low fiber (according to the advice of my NP, this forum, and everything else I've read about colitis in general), and he said no... that fiber was ok. Actually, that fiber was good. I didn't get any other explanation than that. Is this completely incorrect? Does he mean that it might help bulk up the stools possibly? I'm confused.
He also recommended an EGD to see if I have celiac sprue or anything else wrong with my small intestine since he said that microscopic colitis doesn't cause weight loss. How can this be whenever everyone on here seems to have lost weight as well? I have lost 20 pounds since my diagnosis 8 months ago. He said sometimes MC and celiac sprue can go hand-in-hand. I guess it wouldn't hurt to do an EGD just to be sure but I am still confused. I mentioned that my colon may not be absorbing nutrients while it is inflamed and he said that would be more likely seen in inflammation in the small intestine, not the large.
I am so completely confused as to why the Budesonide isn't really working as well for me as it seems to work for everyone else here. I don't know what I'm doing wrong anymore. Is it possible I just need to be on it longer? Isn't 2-3 months long enough to show some good results? He mentioned that if it doesn't work, I could consider Prednisone or immunosuppressants, both of which I am terrified to take. Has anyone else had success with these?
Sorry for the long story but I just feel so defeated. I don't know what else I could take out of my diet. I am just on chicken, turkey, baked potatoes, red potatoes, jasmine rice, and I am terrified to lose anymore weight. I don't know if I should trust my doctor or try to get a different opinion. I just want to do whatever I need to do to get better but I have no idea what that is anymore or how I can try anything different with my diet.
Budesonide - Long term?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh, mbeezie
Budesonide - Long term?
Sarah
Lymphocytic colitis since Feb 2019
Lymphocytic colitis since Feb 2019
I can not wait for Tex to answer this! Honestly I lost 12 pounds and still
Unable to maintain my weight. They send me to psychiatric because the weight loss maybe due to anxiety!! Those are lies! I have been tested for celiac by blood and endoscopy, all negative. However I took enterolab test as recommended here because we are almost intolerant to gluten so our intetsines are inflamed and all our digestive tract, in my case: stomach, small intetsine and large intetsine. I think doctors have no idea wait LC is.
Unable to maintain my weight. They send me to psychiatric because the weight loss maybe due to anxiety!! Those are lies! I have been tested for celiac by blood and endoscopy, all negative. However I took enterolab test as recommended here because we are almost intolerant to gluten so our intetsines are inflamed and all our digestive tract, in my case: stomach, small intetsine and large intetsine. I think doctors have no idea wait LC is.
Ingrid
Hi Sarah,
I have to agree with Ingrid. Many GI docs are lost when it comes to understanding and successfully treating MC. If they're not lost, they certainly do a good job of pretending to be lost. Most of them know a few bits and pieces that they have read about the disease, but their overall understanding of the disease is pathetic.
Not every one of us loses weight. But most of us lose from 10 to 30 pounds, or more.
Soluble fiber will help bulk up your stool, at the cost of irritating your intestines, which in many cases, may prevent remission. Insoluble fiber only irritates our intestines, and is never a good idea, especially for MC patients.
Why put yourself through an EGD, unless you like punishment? It will prove nothing. Any diet that controls MC will also control celiac disease. So why should I care if I have celiac disease? It's a moot point. And remember, Joan Rivers died as the result of an EGD gone wrong.
Yes, if you use budesonide for long-term use, it can affect your adrenals. That's why you have to wean off it slowly. We have at least several members who have used budesonide at full strength for more than a year, with no apparent ill effects. And we have a number of members who have used budesonide at reduced doses (6 mg per day or less) for years, or even indefinitely (many years), with no apparent ill effects. Some have been using a maintenance dose for as long as I can remember (this board has been in operation for over 18 years).
Remember, sometimes the cross-contamination is not coming from the food, it's coming from the way the food is handled. Are there any foods that contain gluten in the house? They might be leaving crumbs on a counter, or in pans or dishes that are used for your food. Flour dust drifts everywhere.
Budesonide doesn't work well for everyone, but if it's helping any at all, it's probably worth using, because for one thing, it can help reduce weight loss.
I hope this helps.
Tex
I have to agree with Ingrid. Many GI docs are lost when it comes to understanding and successfully treating MC. If they're not lost, they certainly do a good job of pretending to be lost. Most of them know a few bits and pieces that they have read about the disease, but their overall understanding of the disease is pathetic.
Not every one of us loses weight. But most of us lose from 10 to 30 pounds, or more.
Soluble fiber will help bulk up your stool, at the cost of irritating your intestines, which in many cases, may prevent remission. Insoluble fiber only irritates our intestines, and is never a good idea, especially for MC patients.
Why put yourself through an EGD, unless you like punishment? It will prove nothing. Any diet that controls MC will also control celiac disease. So why should I care if I have celiac disease? It's a moot point. And remember, Joan Rivers died as the result of an EGD gone wrong.
Yes, if you use budesonide for long-term use, it can affect your adrenals. That's why you have to wean off it slowly. We have at least several members who have used budesonide at full strength for more than a year, with no apparent ill effects. And we have a number of members who have used budesonide at reduced doses (6 mg per day or less) for years, or even indefinitely (many years), with no apparent ill effects. Some have been using a maintenance dose for as long as I can remember (this board has been in operation for over 18 years).
He is correct there, but what he doesn't understand is that MC also inflames the small intestine, similar to the inflammation in the colon.your GI doc wrote:that would be more likely seen in inflammation in the small intestine, not the large
Remember, sometimes the cross-contamination is not coming from the food, it's coming from the way the food is handled. Are there any foods that contain gluten in the house? They might be leaving crumbs on a counter, or in pans or dishes that are used for your food. Flour dust drifts everywhere.
Budesonide doesn't work well for everyone, but if it's helping any at all, it's probably worth using, because for one thing, it can help reduce weight loss.
I hope this helps.
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 Ingrid,
I believe you and I are in the same boat. I understand your frustration with people telling you that you are losing weight because of your anxiety. I try to explain to my family that I am eating but can't seem to gain any weight because of my MC. They said that there's nothing in the literature that says diet or any specific foods will make things worse and that I should just eat eat eat. My response to that is that there's nothing in the literature because it hasn't been studied enough because it's rare. Just because they can't prove something doesn't mean it isn't true. But I understand their frustration. They just see me as a walking skeleton and think that I am dying. And I often feel like I am and nothing is working.
I just need to decide now if it's safe to continue on with Budesonide for 5 or 6 months and if being on it for longer would even be effective, or if I should try something else. It's so hard that this disease requires so many independent decisions because of the "unknown."
I believe you and I are in the same boat. I understand your frustration with people telling you that you are losing weight because of your anxiety. I try to explain to my family that I am eating but can't seem to gain any weight because of my MC. They said that there's nothing in the literature that says diet or any specific foods will make things worse and that I should just eat eat eat. My response to that is that there's nothing in the literature because it hasn't been studied enough because it's rare. Just because they can't prove something doesn't mean it isn't true. But I understand their frustration. They just see me as a walking skeleton and think that I am dying. And I often feel like I am and nothing is working.
I just need to decide now if it's safe to continue on with Budesonide for 5 or 6 months and if being on it for longer would even be effective, or if I should try something else. It's so hard that this disease requires so many independent decisions because of the "unknown."
Sarah
Lymphocytic colitis since Feb 2019
Lymphocytic colitis since Feb 2019
Thank you, Tex!
So if I did have celiac or any inflammation in my small intestine as well, the treatment or diet would not change? I would still be treated with Budesonide or does this only work for the colon? I am also wondering if he may be looking for something else in the small intestine, such as cancer. I asked if there was anything else he was looking for and he said, "everything." He took a biopsy of my terminal ileum during the colonoscopy and it was normal. I know there is more small intestine further up there but the part closest to my colon was fine so I don't know what else is going on. Is an EGD really that bad to recover from? I thought it was just similar to a colonoscopy except they go through your esophagus.
I have been gluten-free for about 3-4 months now. I live alone and there is no gluten in the house so I don't know how I can be getting any cross-contamination. I just feel like there is something I eat a lot of, such as rice or potatoes. Like maybe all those white carbs are feeding the bad bacteria in my gut and it is actually making things worse? I don't know. I am just trying to think of anything.
So some people just take longer than 2-3 months on the high dose Budesonide, and they end up finally seeing results after 5-6 months or maybe a year? I guess I just expected the diet plus Budesonide should definitely work but I will stay on it longer if it's possible I just need more time. It has helped, a little. I just thought I would be forming solid stool by now and not having any WD episodes anymore.
So if I did have celiac or any inflammation in my small intestine as well, the treatment or diet would not change? I would still be treated with Budesonide or does this only work for the colon? I am also wondering if he may be looking for something else in the small intestine, such as cancer. I asked if there was anything else he was looking for and he said, "everything." He took a biopsy of my terminal ileum during the colonoscopy and it was normal. I know there is more small intestine further up there but the part closest to my colon was fine so I don't know what else is going on. Is an EGD really that bad to recover from? I thought it was just similar to a colonoscopy except they go through your esophagus.
I have been gluten-free for about 3-4 months now. I live alone and there is no gluten in the house so I don't know how I can be getting any cross-contamination. I just feel like there is something I eat a lot of, such as rice or potatoes. Like maybe all those white carbs are feeding the bad bacteria in my gut and it is actually making things worse? I don't know. I am just trying to think of anything.
So some people just take longer than 2-3 months on the high dose Budesonide, and they end up finally seeing results after 5-6 months or maybe a year? I guess I just expected the diet plus Budesonide should definitely work but I will stay on it longer if it's possible I just need more time. It has helped, a little. I just thought I would be forming solid stool by now and not having any WD episodes anymore.
Sarah
Lymphocytic colitis since Feb 2019
Lymphocytic colitis since Feb 2019
We're all different, and we all have different recovery rates. One of the biggest challenges with recovering from MC is having enough enough patience and endurance to stick with the diet, no matter what.
Budesonide would probably work about as well for celiac disease as it does for MC. But no GI doc would prescribe budesonide to treat celiac disease, because they finally learned (after 2,000 years) that gluten causes the inflammation with celiac disease, so they just recommend eliminating gluten from the diet.
Most of them apparently don't realize yet that gluten also perpetuates the inflammation with MC, so they prescribe budesonide to treat it.
No one said that an EGD was difficult to recover from. It's just an overpriced, invasive, unnecessary procedure that most of us can do without. EGDs and colonoscopies are the bread and butter of GI docs. They're a great source of income for them, so they're always promoting those procedures.
Over the years, we've had many, many members who were talked into an unnecessary repeat colonoscopy, or EGD by their GI doc. I don't remember any of those members ever posting that their doc ever actually found anything worth mentioning with all those procedures over all those years.
When their prescribed treatment doesn't work, GI docs are always looking for something else to blame for their failed treatment. But they never find anything.
It takes a lot of protein to promote intestinal healing. Protein and fat are essential in the diet. Carbs are not. You should be eating mostly protein.
Tex
Budesonide would probably work about as well for celiac disease as it does for MC. But no GI doc would prescribe budesonide to treat celiac disease, because they finally learned (after 2,000 years) that gluten causes the inflammation with celiac disease, so they just recommend eliminating gluten from the diet.
Most of them apparently don't realize yet that gluten also perpetuates the inflammation with MC, so they prescribe budesonide to treat it.
No one said that an EGD was difficult to recover from. It's just an overpriced, invasive, unnecessary procedure that most of us can do without. EGDs and colonoscopies are the bread and butter of GI docs. They're a great source of income for them, so they're always promoting those procedures.
Over the years, we've had many, many members who were talked into an unnecessary repeat colonoscopy, or EGD by their GI doc. I don't remember any of those members ever posting that their doc ever actually found anything worth mentioning with all those procedures over all those years.
When their prescribed treatment doesn't work, GI docs are always looking for something else to blame for their failed treatment. But they never find anything.
It takes a lot of protein to promote intestinal healing. Protein and fat are essential in the diet. Carbs are not. You should be eating mostly protein.
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?
I am curious about this as well. I have been to two GI docs, the first prescribed Pepto-Bismol tablets, 3 x 3 per day, for 6 weeks, which the NP said would "cure" me. I was doing pretty well at end of six weeks, quit taking and the diarrhea returned within 2 days. My next GI doc prescribed budesonide for 6 weeks. That was great! But again, after 6 weeks symptoms returned almost immediately. She said I could not continue taking that either, and prescribed colestipol. That worked well also, but I developed pain in LLQ that required CT scan, where a diagnosis was constipation and now my prescription for that won't be renewed! She prescribed Miralax and that was awful as it gave me diarrhea all day long! I only took it once. Now I am looking for a new doctor. But what is it that I can take long term?? Before ever consulting an MD I was taking Imodium once a day and living a fairly normal life. Guess I will do that again.
Re: Budesonide - Long term?
When I was diagnosed with CC 6 yrs ago I didnt want to go on the Budesonide as I am a pretty natural girl and the thought of it being a steroid scared me. I lost 21 lbs in 3 months trying myself to control things with Pepto etc. Finally I said ok and my doctor I was working with was a ND that specialized in Gut issues. He explained everything about how Budesonide works in the gut and it was safe. I am sure there probably people that it has not worked well with but for me it was a life safer. He recommended I start with the 9 mg and he called me on my third day to check on things. I was almost back to normal BM's. I of course had been for months really watching my diet and had removed Gluten, Soy, Dairy etc. He then recommended I drop to 6 mg and if things stay good after a week, drop to 3mg and then to stay on that for 6 months to a year. I stayed on for a year and did so well. Continued with diet etc and had been doing very well with the occasional problem until Covid hit. Stress really does a number with MC and I own a small company and the worries came even though I tried really hard to not stress. As Tex mentioned about the fibre, that maybe ok for some but for me I cannot eat fiber due to other issues. I also had SIBO. So I not only need to follow the MC diet but I always watch the LowFod Map diet as well so the Sibo does not come back. I finally called the Gastro doctor and she put me on 3 months of Budesonide. She said to stay on the 9mg but I did what the last doctor told me and I started dropping down and again did really well and was on it for 6 months until I ran out. It was almost 2 months and my problems started again. It just wasnt long enough. My doctor said that she has some patients that have to be on it on a regular basis. I do take supplements and have since the beginning that help my adrenals but I have never had an issue either. Hope this helps as I am about to call the doctor and get back on it myself. Just since this started a couple weeks ago I have lost 6 lbs.
Collagenous Colitis, Benign Cramp Fasciculations in lower legs, Thyroid and High Cholesterol
-
glennstevej
- Posts: 2
- Joined: Thu Apr 01, 2021 6:51 am
Re: Budesonide - Long term?
budesonide helped me. however, since i am taking medications for high blood pressure i noticed a large spike in blood pressure while on the steroid. after consulting with my regular doctor i was able to get my blood pressure back to normal levels. make sure you monitor your blood pressure when taking steroids even if your blood pressure is considered normal.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Budesonide - Long term?
sweet girl
my observations during my 12 years being part of this group
- no medication will work long term. it is a bandaid, it masks symptoms it doesn't treat root cause
and in the USA depending on your health coverage, generally it becomes a cost issue more so than a health issue to stay on steroid medications long term
Long term use of steroid based medication has risks - it impacts liver, bone health etc etc. and the other observation with steroids for MC treatment, it loses its effectiveness the more/longer you use it. (When I joined 12 years ago, and reading about risks of long term steroid use for MC, I chose the diet/lifestyle approach as foundation to get remission)
- any medication (steroid budenside, mesalamine, pepto, cholestryamine etc) has limited scope of success if you are not making diet changes/lifestyle changes and have good levels of Vit D3 /Magnesium.
as mentioned above medication masks the symptoms it does not treat root cause. best approach to treat root cause is to avoid inflammatory triggers (food, environmental stress triggers) and to take right supplements that help reduce inflammation and promote healing of the gut (vit D3 magnesium)
sadly there is no quick fix, easy solution. even with medication, if you are not avoiding major triggers then the medication has limited scope to work.
additionally, a mediation that works really well for one person, can cause total chaos for another.
you are not alone, we all feel that crappy overwhelmness of learning to live with MC.
what I can say that if you are willing to embrace changes, such as diet, lifestyle changes, you can get wellness. I won't guarantee you will get the exact same pre MC life back, majority of people (I estimate 80%) can get minimal symptoms quality of life.
hope this helps
my observations during my 12 years being part of this group
- no medication will work long term. it is a bandaid, it masks symptoms it doesn't treat root cause
and in the USA depending on your health coverage, generally it becomes a cost issue more so than a health issue to stay on steroid medications long term
Long term use of steroid based medication has risks - it impacts liver, bone health etc etc. and the other observation with steroids for MC treatment, it loses its effectiveness the more/longer you use it. (When I joined 12 years ago, and reading about risks of long term steroid use for MC, I chose the diet/lifestyle approach as foundation to get remission)
- any medication (steroid budenside, mesalamine, pepto, cholestryamine etc) has limited scope of success if you are not making diet changes/lifestyle changes and have good levels of Vit D3 /Magnesium.
as mentioned above medication masks the symptoms it does not treat root cause. best approach to treat root cause is to avoid inflammatory triggers (food, environmental stress triggers) and to take right supplements that help reduce inflammation and promote healing of the gut (vit D3 magnesium)
sadly there is no quick fix, easy solution. even with medication, if you are not avoiding major triggers then the medication has limited scope to work.
additionally, a mediation that works really well for one person, can cause total chaos for another.
you are not alone, we all feel that crappy overwhelmness of learning to live with MC.
what I can say that if you are willing to embrace changes, such as diet, lifestyle changes, you can get wellness. I won't guarantee you will get the exact same pre MC life back, majority of people (I estimate 80%) can get minimal symptoms quality of life.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Re: Budesonide - Long term?
I have had MC for nearly 15 years and have taken budesonide almost the entire time. I wasn't able to reach remission by eliminating foods, even after getting down to 83 lbs. and consuming just five foods, three being meat, and the other two being mango and almond flour. I have many food intolerances. I finally had to accept that I would never be able to manage this condition without taking a steroid. I presently take 3mg for three days, skip one day, and resume taking 3mg. for three days. My BMs are rarely "normal," and I'm still in the bathroom most days 3-5 times, but D is rare. I don't post much anymore because I don't want to discourage others. I think I'm an aberration, and most people are able to achieve remission by eliminating triggers.
I took a DNA test and sent for the medical evaluation, and it said I was very tolerant of budesonide, and indeed I have been. I'm 76 years old now, and was 62 when I received my diagnosis. I have osteoporosis, but I had that diagnosis prior to taking the steroid because I am small-boned and petite.
The gastroenterologist who originally diagnosed me told me I should take the steroid if I still needed it, and he gave me a prescription for 3 pills a day, years after I had started it. The next GI I saw said I should try to get the dosage down to 2 or 3 pills a week. Another GI recommended I take Zantac, which really upset my system, and is now having lawsuits over its cancer-causing properties. I no longer see a GI; I order Budez from All Day Chemist without needing a prescription.
Colonoscopies are the GI's bread and butter, and they will always try to convince you to have one. I haven't had one since my diagnosis. I take a stool test for cancer annually that my primary care doctor orders. He says it detects cancer sooner than a colonoscopy, which in my mind was the only rationale for getting another colonoscopy.
Listen to the advice of the members of this board. They speak from experience. Realize that we are all unique individuals, and we'll each have different triggers.
I took a DNA test and sent for the medical evaluation, and it said I was very tolerant of budesonide, and indeed I have been. I'm 76 years old now, and was 62 when I received my diagnosis. I have osteoporosis, but I had that diagnosis prior to taking the steroid because I am small-boned and petite.
The gastroenterologist who originally diagnosed me told me I should take the steroid if I still needed it, and he gave me a prescription for 3 pills a day, years after I had started it. The next GI I saw said I should try to get the dosage down to 2 or 3 pills a week. Another GI recommended I take Zantac, which really upset my system, and is now having lawsuits over its cancer-causing properties. I no longer see a GI; I order Budez from All Day Chemist without needing a prescription.
Colonoscopies are the GI's bread and butter, and they will always try to convince you to have one. I haven't had one since my diagnosis. I take a stool test for cancer annually that my primary care doctor orders. He says it detects cancer sooner than a colonoscopy, which in my mind was the only rationale for getting another colonoscopy.
Listen to the advice of the members of this board. They speak from experience. Realize that we are all unique individuals, and we'll each have different triggers.
You never know what you can do until you have to do it.
Re: Budesonide - Long term?
Sheesh.....do what you need to do to get quality of life. This is a rough, rough disease. If budesonide works then get back on it and work on the diet.
The European docs seem to be more okay with long term use of budesonide--like 9 months or so than the American docs but the Mayo Clinic has been okay with low dose long term use (years) of budesonide for a number of years now
The European docs seem to be more okay with long term use of budesonide--like 9 months or so than the American docs but the Mayo Clinic has been okay with low dose long term use (years) of budesonide for a number of years now
Re: Budesonide - Long term?
Taking Budesinide for four years. Now I’ve developed Adrenal Insufficiency. Anyone else??
Re: Budesonide - Long term?
I try to read every post here, and I'm sure I miss very few. I don't claim to have perfect memory, but the only case I can recall in the 19 years of this forums existence occurred when a members doctor advised her to stop taking budesonide cold turkey, with absolutely no dose tapering. I'm aware of at least one other case of adrenal insufficiency, but there was no evidence to suggest that it was associated with budesonide.
Tex
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.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Re: Budesonide - Long term?
I don't think there is a direct link between the budenside and adrenal insufficiency
most adrenal issues are related to nutrient deficiencies
Nutrient deficiency are very common for anyone with IBD regardless of treatment protocol
Key nutrients for adrenal exhaustion are B5, Vit C, potassium, magnesium, copper, tyrosine
most adrenal issues are related to nutrient deficiencies
Nutrient deficiency are very common for anyone with IBD regardless of treatment protocol
Key nutrients for adrenal exhaustion are B5, Vit C, potassium, magnesium, copper, tyrosine
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama