Budesonide EC
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Budesonide EC
Hi...My GI doctor recently prescribed Budesonide EC 3 MG Capsules (2 in the morning). I have been on them for 2 weeks and my Lymphocytic Colitis seems to have gotten worse. Does anyone know how long it takes to start working? I kept hearing how great this medication was and I am hoping that it starts to work. I did put in a call to my doctor today but haven't heard back. Feeling sad...trying to stay positive.
Hi,
Normally, budesonide begins to show significant benefits in anywhere from a couple of days to a couple of weeks (but that's based on a normal dose of 9 mg per day). For a few of us though, it can take up to a couple of months to see results. However, it should not make the symptoms worse in the meantime. For some of us though, budesonide is ineffective until after we change our diet to cut out our main food sensitivities, such as gluten and dairy.
Unfortunately your doctor prescribed a dose that's probably too low to be effective for you (the labeled dose is 3-3 mg capsules daily, for a total of 9 mg). 2 capsules per day is the maintenance dose that can be used after the patient is in remission, in order to maintain remission. That said, some patients will improve on 6 mg per day, but that dose simply is not sufficient for many of us (and it can take an unnecessarily long time to reach remission even if it does work).
There are 3 other possibilities:
1. Budesonide may not be effective for you.
2. Budesonide may cause you to have an adverse reaction.
3. Your vitamin D level may be too low for the budesonide to be able to utilize it to suppress the inflammation. Do you happen to know your vitamin D level?
I hope this helps.
Tex
Normally, budesonide begins to show significant benefits in anywhere from a couple of days to a couple of weeks (but that's based on a normal dose of 9 mg per day). For a few of us though, it can take up to a couple of months to see results. However, it should not make the symptoms worse in the meantime. For some of us though, budesonide is ineffective until after we change our diet to cut out our main food sensitivities, such as gluten and dairy.
Unfortunately your doctor prescribed a dose that's probably too low to be effective for you (the labeled dose is 3-3 mg capsules daily, for a total of 9 mg). 2 capsules per day is the maintenance dose that can be used after the patient is in remission, in order to maintain remission. That said, some patients will improve on 6 mg per day, but that dose simply is not sufficient for many of us (and it can take an unnecessarily long time to reach remission even if it does work).
There are 3 other possibilities:
1. Budesonide may not be effective for you.
2. Budesonide may cause you to have an adverse reaction.
3. Your vitamin D level may be too low for the budesonide to be able to utilize it to suppress the inflammation. Do you happen to know your vitamin D level?
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.
Thank you Tex,
Your response does help. I will ask my doctor a few more questions and see if increasing the dose to 9mg Budesonide EC a day might help. I also checked my Vitamin D from my blood work a few months back and it's low.Not sure what all that means but they gave me a supplement that I haven't kept up with, so that may be part of the issue. I will start taking it again.
QUESTASSURED 25-OH VIT D, (D2,D3), LC/MS/MS
QUESTASSURED 25-OH VIT D, (D2,D3), LC/MS/MS Lab: IG
Test Name Results Reference Range
VITAMIN D, 25-OH, TOTAL 30 30-100 ng/mL
25-OHD3 indicates both endogenous production and supplementation. 25-OHD2 is an indicator of exogenous sources, such as diet or supplementation.
Therapy is based on measurement of Total 25-OHD, with levels <20> or = 30 ng/mL.
VITAMIN D, 25-OH, D3 30 ng/mL
Reference Range Not established
VITAMIN D, 25-OH, D2 <4 ng/mL
I just hope this medication works for me. It's hard not being able to leave the house and when I do I worry about bathroom issues. So far, the only thing that has worked for me is Desipramine, but since I am seeing a new GI doctor he wanted me to try the Budesonide. The Desipramine seemed to be causing severe headaches 1 or 2 times a day and worked great for 3-4 days at a time then I would be on the toilet for a day or 2. It may be worth the headaches.
Thanks for listening.
Hi,
Normally, budesonide begins to show significant benefits in anywhere from a couple of days to a couple of weeks (but that's based on a normal dose of 9 mg per day). For a few of us though, it can take up to a couple of months to see results. However, it should not make the symptoms worse in the meantime. For some of us though, budesonide is ineffective until after we change our diet to cut out our main food sensitivities, such as gluten and dairy.
Unfortunately your doctor prescribed a dose that's probably too low to be effective for you (the labeled dose is 3-3 mg capsules daily, for a total of 9 mg). 2 capsules per day is the maintenance dose that can be used after the patient is in remission, in order to maintain remission. That said, some patients will improve on 6 mg per day, but that dose simply is not sufficient for many of us (and it can take an unnecessarily long time to reach remission even if it does work).
There are 3 other possibilities:
1. Budesonide may not be effective for you.
2. Budesonide may cause you to have an adverse reaction.
3. Your vitamin D level may be too low for the budesonide to be able to utilize it to suppress the inflammation. Do you happen to know your vitamin D level?
I hope this helps.
Tex
Your response does help. I will ask my doctor a few more questions and see if increasing the dose to 9mg Budesonide EC a day might help. I also checked my Vitamin D from my blood work a few months back and it's low.Not sure what all that means but they gave me a supplement that I haven't kept up with, so that may be part of the issue. I will start taking it again.
QUESTASSURED 25-OH VIT D, (D2,D3), LC/MS/MS
QUESTASSURED 25-OH VIT D, (D2,D3), LC/MS/MS Lab: IG
Test Name Results Reference Range
VITAMIN D, 25-OH, TOTAL 30 30-100 ng/mL
25-OHD3 indicates both endogenous production and supplementation. 25-OHD2 is an indicator of exogenous sources, such as diet or supplementation.
Therapy is based on measurement of Total 25-OHD, with levels <20> or = 30 ng/mL.
VITAMIN D, 25-OH, D3 30 ng/mL
Reference Range Not established
VITAMIN D, 25-OH, D2 <4 ng/mL
I just hope this medication works for me. It's hard not being able to leave the house and when I do I worry about bathroom issues. So far, the only thing that has worked for me is Desipramine, but since I am seeing a new GI doctor he wanted me to try the Budesonide. The Desipramine seemed to be causing severe headaches 1 or 2 times a day and worked great for 3-4 days at a time then I would be on the toilet for a day or 2. It may be worth the headaches.
Thanks for listening.
Hi,
Normally, budesonide begins to show significant benefits in anywhere from a couple of days to a couple of weeks (but that's based on a normal dose of 9 mg per day). For a few of us though, it can take up to a couple of months to see results. However, it should not make the symptoms worse in the meantime. For some of us though, budesonide is ineffective until after we change our diet to cut out our main food sensitivities, such as gluten and dairy.
Unfortunately your doctor prescribed a dose that's probably too low to be effective for you (the labeled dose is 3-3 mg capsules daily, for a total of 9 mg). 2 capsules per day is the maintenance dose that can be used after the patient is in remission, in order to maintain remission. That said, some patients will improve on 6 mg per day, but that dose simply is not sufficient for many of us (and it can take an unnecessarily long time to reach remission even if it does work).
There are 3 other possibilities:
1. Budesonide may not be effective for you.
2. Budesonide may cause you to have an adverse reaction.
3. Your vitamin D level may be too low for the budesonide to be able to utilize it to suppress the inflammation. Do you happen to know your vitamin D level?
I hope this helps.
Tex
Your vitamin D level is not actually deficient (at 30 ng/mL). It might be better if it were somewhat higher, but your test level should be high enough for budesonide to work normally. You can safely ignore the part of the report that shows the D2 results (D2 <4 ng/mL), because that shows up on virtually everyone's test result, and it's pretty much irrelevant. Only D3 matters.
One of the problems with the Desipramine is that for many of us, the tricyclic antidepressants tend to trigger an MC flare. That said, others feel that low doses of a tricyclic antidepressant help to regulate their intestinal motility, especially those who have constipation as a symptom, rather than diarrhea, or those who have alternating C and D.
Your doctor should be willing to recommend the 9 mg/day dose, because that's the standard dose, according to the label.
You're very welcome,
Tex
One of the problems with the Desipramine is that for many of us, the tricyclic antidepressants tend to trigger an MC flare. That said, others feel that low doses of a tricyclic antidepressant help to regulate their intestinal motility, especially those who have constipation as a symptom, rather than diarrhea, or those who have alternating C and D.
Your doctor should be willing to recommend the 9 mg/day dose, because that's the standard dose, according to the label.
You're very welcome,
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 Friscomom ( are you from San Francisco?). Tex is correct about the dose. I started on 9mg. and was able to drop the dose down to 6mg. within a month. ( 3mg in 3 months.completely off of it by month 6) HOWEVER, DIET CHANGES MUST BE MADE AT THE SAME TIME FOR THE DRUG TO REALLY WORK. Entocort, even when it works, is only a "bandaid". it will make you feel better while you are on it, but if you don't address your food sensitivities, you will be back right where you are now when you wean off of it. AND each time you go back on the drug, it seems to be less effective.
good luck
Leah
good luck
Leah
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jessica329
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Sorry for the late response. Leah, I am from Frisco, Texas. :)
I contacted my doctor and he increased my dose to 9mg daily to see how that would work. It's been over a week and I am not seeing a change. Hoping for the best. My diet is OK. I usually eat pretty well with the occasional cheat day. I don't drink sodas but drink water throughout the day and a glass of red wine after dinner. 1 cup of coffee in the morning with a little creamer and that's the extent of my dairy except for feta cheese on my salads a couple times a week. Not a big bread eater either. I've been tested for celiac disease and that was fine. Something is going on though. How do i figure out what it is? The doctors don't seem to know. My allergies and asthma started at the same time my tummy troubles started. Outside of basic allergy testing that I have done. How do I figure out what specifically I am putting into my body or that I am around is affecting me?
I contacted my doctor and he increased my dose to 9mg daily to see how that would work. It's been over a week and I am not seeing a change. Hoping for the best. My diet is OK. I usually eat pretty well with the occasional cheat day. I don't drink sodas but drink water throughout the day and a glass of red wine after dinner. 1 cup of coffee in the morning with a little creamer and that's the extent of my dairy except for feta cheese on my salads a couple times a week. Not a big bread eater either. I've been tested for celiac disease and that was fine. Something is going on though. How do i figure out what it is? The doctors don't seem to know. My allergies and asthma started at the same time my tummy troubles started. Outside of basic allergy testing that I have done. How do I figure out what specifically I am putting into my body or that I am around is affecting me?
Hi F.M.,
Welcome!
I was also an entocort user. It will take shifting your diet to heal. Eliminate creamer and eliminate feta. Go 100% dairy free for awhile. Eliminate salads and all raw veggies. These are abrasive to our gut and will prevent healing. You can add them back down the road. Eliminate all gluten. There is no such thing as a cheat day. Like Leah said if you don't eliminate all gluten when you get off of Entocort you will have relapse within 10 days.
Generally safe foods for healing are chicken, pork, protein; sweet potato, rice or mashed potato (no butter), olive oil, coconut oil, overcooked veggies like carrots or squash. Coffee is generally ok. Narrow diet is better early on. Keep it simple. Almost all of us test negative for celiac but it takes going and staying GF to heal.
Enterolab testing will help.
Brandy
Welcome!
I was also an entocort user. It will take shifting your diet to heal. Eliminate creamer and eliminate feta. Go 100% dairy free for awhile. Eliminate salads and all raw veggies. These are abrasive to our gut and will prevent healing. You can add them back down the road. Eliminate all gluten. There is no such thing as a cheat day. Like Leah said if you don't eliminate all gluten when you get off of Entocort you will have relapse within 10 days.
Generally safe foods for healing are chicken, pork, protein; sweet potato, rice or mashed potato (no butter), olive oil, coconut oil, overcooked veggies like carrots or squash. Coffee is generally ok. Narrow diet is better early on. Keep it simple. Almost all of us test negative for celiac but it takes going and staying GF to heal.
Enterolab testing will help.
Brandy
Hi friscomom and welcome!
You've gotten good advice about diet and upping to 9mg. I was on Entocort last year, started at 9mg, and worked my way down to get off of it 7 months later. Many of us have histamine issues, and our GI symptoms can be improved (esp at high allergy times) by taking an antihistamine. Your allergies that came on with this are related. Do you take an antihistamine now? Certain high histamine foods can also make symptoms worse. Red wine is esp high histamine, so hate to tell you to give up more things, but you might want to stop that for awhile. I am now able to enjoy an occasional drink (like you, I used to have a glass of wine most nights, but gave it up while trying to heal), but still tend to stay away from red wine, and will have white or a mixed drink. All alcohol is high histamine, but red wine is highest. Other high histamine foods are avocadoes, fermented foods, and leftovers. Meat you cook today, will get higher histamine each day in the fridge, so it is best to freeze in individual portions of anything that you won't eat by the next day. Histamine has a bucket effect-lots of foods have it at various levels, but don't want to mix too many high histamine foods at the same meal.
Lisa
You've gotten good advice about diet and upping to 9mg. I was on Entocort last year, started at 9mg, and worked my way down to get off of it 7 months later. Many of us have histamine issues, and our GI symptoms can be improved (esp at high allergy times) by taking an antihistamine. Your allergies that came on with this are related. Do you take an antihistamine now? Certain high histamine foods can also make symptoms worse. Red wine is esp high histamine, so hate to tell you to give up more things, but you might want to stop that for awhile. I am now able to enjoy an occasional drink (like you, I used to have a glass of wine most nights, but gave it up while trying to heal), but still tend to stay away from red wine, and will have white or a mixed drink. All alcohol is high histamine, but red wine is highest. Other high histamine foods are avocadoes, fermented foods, and leftovers. Meat you cook today, will get higher histamine each day in the fridge, so it is best to freeze in individual portions of anything that you won't eat by the next day. Histamine has a bucket effect-lots of foods have it at various levels, but don't want to mix too many high histamine foods at the same meal.
Lisa
Hi Know this can be overwhelming, but all that you have heard here is good advise. If you want to heal, you must not "cheat" right now. ALL RAW fruits and veggies should be avoided right now. they have too much fiber. It's like putting sandpaper to an open wound.
I figured out that histamines were an issue by taking an OTC antihistamine ( Allegra). It made a huge difference for me. Then I added a Benadryl at night. Works like a charm :) But I have to say, that I didn't even try the antihistamines until after I had gotten down to one soft BM a day….maybe a year after my diagnosis.
The good news is that I have been able to add many foods back in and sometimes I can "cheat with a little dairy or soy, but it's been over three years and I have done a lot of healing.
Good luck
leah
I figured out that histamines were an issue by taking an OTC antihistamine ( Allegra). It made a huge difference for me. Then I added a Benadryl at night. Works like a charm :) But I have to say, that I didn't even try the antihistamines until after I had gotten down to one soft BM a day….maybe a year after my diagnosis.
The good news is that I have been able to add many foods back in and sometimes I can "cheat with a little dairy or soy, but it's been over three years and I have done a lot of healing.
Good luck
leah
Leah,
Remember that the reason why you are able to occasionally cheat without a reaction is almost surely because you have selective IgA deficiency, which prevents your immune system from producing normal amounts of antibodies against those foods. Most of the rest of us can't do that and get away with it.
Most of us are aware of your selective IgA deficiency, but Friscomom and any other new members may not be aware of that condition and what it does to our immune system. It's not considered to be a desirable trait, and many medical tests will not work correctly because of it, but it does have at least one silver lining as you pointed out.
Incidentally, how is your recovery coming along? Are you still taking the tamoxifen or did you decide to try something else? I apologize if I missed an update.
Tex
Remember that the reason why you are able to occasionally cheat without a reaction is almost surely because you have selective IgA deficiency, which prevents your immune system from producing normal amounts of antibodies against those foods. Most of the rest of us can't do that and get away with it.
Most of us are aware of your selective IgA deficiency, but Friscomom and any other new members may not be aware of that condition and what it does to our immune system. It's not considered to be a desirable trait, and many medical tests will not work correctly because of it, but it does have at least one silver lining as you pointed out.
Incidentally, how is your recovery coming along? Are you still taking the tamoxifen or did you decide to try something else? I apologize if I missed an update.
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.
Yeah, you're right. I know that somewhere I recently posted that BECAUSE of my IgA deficiency, I can cheat here and there ( I thought it was on this thread…. It was recent) . Sorry for any confusion .
I am fully recovered Tex. Thanks for asking. The first few days were rough, but I started walking after that and was able to walk a couple miles within a week and a half! Four weeks post surgery, I was able to do almost all my regular exercises. The only problem now is that because they also took my ovaries out, I am having hot flashes like crazy. Night time is the worst ( 6 a night)! AND I can't take estrogen or even phytoestrogens because I had hormone receptive breast cancer. So frustrating.
Leah
I am fully recovered Tex. Thanks for asking. The first few days were rough, but I started walking after that and was able to walk a couple miles within a week and a half! Four weeks post surgery, I was able to do almost all my regular exercises. The only problem now is that because they also took my ovaries out, I am having hot flashes like crazy. Night time is the worst ( 6 a night)! AND I can't take estrogen or even phytoestrogens because I had hormone receptive breast cancer. So frustrating.
Leah