I'm on my last month of Budesonide therapy for MC/LC diagnosis. 1 capsule of 3mg, once a day. I was curious of any side effects, what to expect, etc. I've talked to my GP and GI doctors about continuing for a fourth month, tapering to every other day, or every 3 days just to be safe. I'm having normal stools 1-2 daily now, with a flare, or 2 thrown in over the span of 2 months.
I have noticed low grain headaches now that I've tappered from 3 capsules a day, to 2 a day, now down to 1 capsule per day.
I've definitely noticed higher anxiety, more tired and lethargic than I was when I was on 3 capsules a day.
Just looking for some feedback on this last month of taper of what to expect, as we all know our "thick skull" doctors just say "you will be fine"...Unfortunately through this 10 month battle of a diagnoses and finally medication therapy, I've lost 50lbs that I cant put back on eating low fat and low fiber, which has taken its toll on my entire body! From back pain and muscle loss, to Insomnia and now the return of my 10 yr dormant Tinnitus, which is very taxing. While I'm thrilled my daily D has been reduced to normal stools (must have been doing something right following the advice of Tex!), I'm still very uncertain of the taper and returning symptoms that will devastate me and possibly cost me my job! I still have most days where it feels as if I have to go after my morning ritual, but it wanes and waxes most days and I do not go until the next morning. Should I continue on the Magnesium, Vitamin D, along with a pretty bland/safe diet for awhile (many months for sure I assume.) Should I play it safe and continue on Budesonide for at least a 4th month?
Thanks for the feedback!
Tapering off Budesonide
In my opinion, the slower and longer you taper a budesonide treatment, the less likely you are to suffer a relapse. If you feel like you're slipping back into a reaction cycle, adding a daily antihistamine to your treatment regimen may help as you continue to taper the budesonide. There shouldn't be any adverse side effects if you're ready to reduce the dose and you taper the dose slowly.
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.
Hi TC,
Yes to fourth month. We find that those who stop at 3 months have a higher rate of relapse. The problem is many of the American Docs prescribe a three month regimen. My total stint on budesonide was 4.5 months. I was trying to stay on for 5 months due to the board but had side effects so got off sooner. This is a disease that it is miserable to go backwards.
If you are having normal stools now then getting off at the 4 or 4.5 or 5 month time frame seems realistic. Listen to your body. Long slow taper is best.
A couple of pointers for when you get ready to take your last pill:
a. Consider start taking antihistamine several days before your last pill and then maybe about a week after your last pill. If you get too much dryness then go to 1/2 of antihistamine. Like Tex says this will prevent reflare.
b. Consider switch to magnesium oil or Epsom salt baths temporarily for week or so after last pill. Then switch back to oral.
c. Eliminate all supplements for maybe 7-10 days after last budesonide and slowly add them back...like one at a time for a week etc.
d. Stick with extremely safe foods for about a month after last budesonide. This is not the time to try new foods.
I felt lousy during the first year of MC and my condition waxed and waned. It takes awhile to get back to normal.
Brandy
Yes to fourth month. We find that those who stop at 3 months have a higher rate of relapse. The problem is many of the American Docs prescribe a three month regimen. My total stint on budesonide was 4.5 months. I was trying to stay on for 5 months due to the board but had side effects so got off sooner. This is a disease that it is miserable to go backwards.
If you are having normal stools now then getting off at the 4 or 4.5 or 5 month time frame seems realistic. Listen to your body. Long slow taper is best.
A couple of pointers for when you get ready to take your last pill:
a. Consider start taking antihistamine several days before your last pill and then maybe about a week after your last pill. If you get too much dryness then go to 1/2 of antihistamine. Like Tex says this will prevent reflare.
b. Consider switch to magnesium oil or Epsom salt baths temporarily for week or so after last pill. Then switch back to oral.
c. Eliminate all supplements for maybe 7-10 days after last budesonide and slowly add them back...like one at a time for a week etc.
d. Stick with extremely safe foods for about a month after last budesonide. This is not the time to try new foods.
I felt lousy during the first year of MC and my condition waxed and waned. It takes awhile to get back to normal.
Brandy
Budesonide taper
What brand of an Antihistamine do you recommend?
It’s weird, but my sneezing, watery eyes and constant nasal congestion have almost completely disappeared since starting Budesonide! Or possibly by reducing/eliminating Gluten and dairy that has made the difference? I still get tremendous morning stomach gurgle until I eat a banana and gluten free oatmeal for breakfast. Noticed a lot more gas some days too.
As far as the loss of weight, that seems to impact me the most. I’m terribly weak, out of shape and have noticed my gums receding. I’m curious if I should be tested for Malabsorption?
4 months of chicken, rice and green beans surely don’t supply the fat intake I need, nor the required carbs and nutritional value a body needs. I Vitamin Supplement and take Digestive Enzymes to help with the fat intake. I realize going low fat and low fiber was necessary to heal,
I need fat in my Diet somehow, without causing a flare.
Thanks
It’s weird, but my sneezing, watery eyes and constant nasal congestion have almost completely disappeared since starting Budesonide! Or possibly by reducing/eliminating Gluten and dairy that has made the difference? I still get tremendous morning stomach gurgle until I eat a banana and gluten free oatmeal for breakfast. Noticed a lot more gas some days too.
As far as the loss of weight, that seems to impact me the most. I’m terribly weak, out of shape and have noticed my gums receding. I’m curious if I should be tested for Malabsorption?
4 months of chicken, rice and green beans surely don’t supply the fat intake I need, nor the required carbs and nutritional value a body needs. I Vitamin Supplement and take Digestive Enzymes to help with the fat intake. I realize going low fat and low fiber was necessary to heal,
I need fat in my Diet somehow, without causing a flare.
Thanks
Use whatever antihistamine works for you. I use Allegra because Claritin doesn't seem to have much effect on me. Some use Zyrtec.
Don't eat oatmeal for breakfast or any other time while you are in recovery. You can test it after you have stabilized for a while, but most of us react even to pure oatmeal. It contains avenin, a prolamine protein that is very similar to gluten, only weaker. That's probably where your gas is coming from — digestive problems caused by avenin.
Try lamb — some cuts contain plenty of fat.
Tex
Don't eat oatmeal for breakfast or any other time while you are in recovery. You can test it after you have stabilized for a while, but most of us react even to pure oatmeal. It contains avenin, a prolamine protein that is very similar to gluten, only weaker. That's probably where your gas is coming from — digestive problems caused by avenin.
Try lamb — some cuts contain plenty of fat.
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.
I eat gluten free oatmeal everyday for at least some source of needed fiber and a great filler until my next small meal and the gas isn’t everyday. Just some days and nights, long after Ive ingested any oatmeal. Other than lamb (which most of my local grocery stores don’t carry), any other fat alternatives meat source you’d recommend that aren’t out of reach of a typical grocery store supply. I’ve always had gas growing up and of course would “let it rip” working in construction-Lol! Only now it’s the saying “never trust a fart”! Lol! Thankfully no accidents breaking wind!
By the way, what does the Antihistamine assist with in tapering?
Thanks Tex.
By the way, what does the Antihistamine assist with in tapering?
Thanks Tex.
If/when you relapse after completely discontinuing the budesonide, try cutting out the oatmeal. The most difficult food sensitivities to track down are the ones we eat every day, because regularity creates an atmosphere of comfort and artificial trust.
If you can fart at all during an MC reaction (without very adverse consequences) you are one fortunate individual. LOL.
You're asking a very technical question when you ask why antihistamines help when weaning off budesonide. I doubt that any doctor you are likely to encounter could answer that question. Most of them will not even realize that it helps. So this answer is not chiseled in stone, because it's undocumented by medical research — it's my own opinion of why antihistamines are beneficial in that situation.
In my opinion, the mechanism of action is this:
Antihistamines inhibit seretonin uptake. About 90 % of our seretonin is located in our enterochromaffin (EC) cells in our intestinal epithelia. Seretonin released from EC cells regulates motility in the gut (in the brain seretonin affects mood, etc.). Obviously, motility regulation is one of the primary problems with any type of colitis.
Corticosteroids work by suppressing mast cell numbers and activity. Weaning off a corticosteroid results in a rebound of mast cell numbers and activity, which tends to promote increased motility. So weaning too fast causes mast cell numbers to overshoot their normal population and activity level, resulting in diarrhea in many cases. So I think they work by using the inhibition of serotonin uptake to suppress motility, thereby limiting the risk of increased motility (and diarrhea).
Tex
If you can fart at all during an MC reaction (without very adverse consequences) you are one fortunate individual. LOL.
You're asking a very technical question when you ask why antihistamines help when weaning off budesonide. I doubt that any doctor you are likely to encounter could answer that question. Most of them will not even realize that it helps. So this answer is not chiseled in stone, because it's undocumented by medical research — it's my own opinion of why antihistamines are beneficial in that situation.
In my opinion, the mechanism of action is this:
Antihistamines inhibit seretonin uptake. About 90 % of our seretonin is located in our enterochromaffin (EC) cells in our intestinal epithelia. Seretonin released from EC cells regulates motility in the gut (in the brain seretonin affects mood, etc.). Obviously, motility regulation is one of the primary problems with any type of colitis.
Corticosteroids work by suppressing mast cell numbers and activity. Weaning off a corticosteroid results in a rebound of mast cell numbers and activity, which tends to promote increased motility. So weaning too fast causes mast cell numbers to overshoot their normal population and activity level, resulting in diarrhea in many cases. So I think they work by using the inhibition of serotonin uptake to suppress motility, thereby limiting the risk of increased motility (and diarrhea).
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.
Hate to beat a dead horse, but any particular time of day to take an Antihistamine? I’ve always had a weird reaction to most allergy type medicines (when Ive actually had to use them), meaning instead of making me sleepy, drowsy and tired feeling, I get antsy and hyper wired! So logically it would be to take mid morning?
The MC has given me enough anxiety that I don’t need any other drugs to elevate my anxiety even worse per say. One other thing Tex. I’ve recently noticed my gums receding to the point of going to the dentist to Be checked for Periodontal Disease? Again, never had major teeth, or gum issues until this MC took over my body! Lack of proper nutrients? Inflammation invading the mouth/mucous membranes from MC? Leaky Gut?
Thanks Again!
The MC has given me enough anxiety that I don’t need any other drugs to elevate my anxiety even worse per say. One other thing Tex. I’ve recently noticed my gums receding to the point of going to the dentist to Be checked for Periodontal Disease? Again, never had major teeth, or gum issues until this MC took over my body! Lack of proper nutrients? Inflammation invading the mouth/mucous membranes from MC? Leaky Gut?
Thanks Again!
I've always taken them after breakfast, but if you're using 24-hour antihistamine doses it probably doesn't make much difference, so long as you use a regular schedule, If you use 12-hour versions, you will need to take them every 12 hours, obviously. some people find it beneficial to take a 24-hour antihistamine in the morning and Benedryl at night.
The gum issue is probably a response to gluten sensitivity. Been there, done that. It's one of the undocumented side effects of MC. Unless you have been reacting or on a limited diet for several years, I doubt it would be due to a nutrient deficiency this soon.
You're very welcome,
Tex
The gum issue is probably a response to gluten sensitivity. Been there, done that. It's one of the undocumented side effects of MC. Unless you have been reacting or on a limited diet for several years, I doubt it would be due to a nutrient deficiency this soon.
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.
Thanks again for the info Tex. What is another test for Gluten sensitivities/Intolerance, other than a stool sample through Entrolab? Or possibly eating a small/large amount of wheat bread and seeing what happens?
I’ve been maintaining Gluten free for several months now and my gums starting receding in the last 2 weeks. I’ve researched gum receding and could find nothing related to Budesonide (steroid) side effects and or food allergies? If Gluten related to MC were that devastating to teeth, gums, you would thing someone would have “documented” research on it? Simply crazy that Gluten is allowed in foods if that’s the case!
Only lack of proper nutrients and age. Im only 55 and took care of my teeth and gums with annual dental visits forever. Excuse me while I fart! Lol!
I’ve been maintaining Gluten free for several months now and my gums starting receding in the last 2 weeks. I’ve researched gum receding and could find nothing related to Budesonide (steroid) side effects and or food allergies? If Gluten related to MC were that devastating to teeth, gums, you would thing someone would have “documented” research on it? Simply crazy that Gluten is allowed in foods if that’s the case!
Only lack of proper nutrients and age. Im only 55 and took care of my teeth and gums with annual dental visits forever. Excuse me while I fart! Lol!
You may have a gum issue unrelated to MC. Read my book on Pancreatic Cancer — it's free everywhere but amazon.
Usually the effects of MC are not that severe. Gluten sensitivity destroys the enamel on the teeth and thereby makes them vulnerable to decay. I always had great teeth, but several years before my MC symptoms presented my teeth headed south. By the time my MC symptoms became severe, going to a dentist was a waste of time. After I changed my diet and healed, my teeth stabilized and caused no further trouble.
I don't know of any other test that's reliable. The celiac screening tests used by doctors (serum tests) are extremely insensitive and unreliable. It will only detect fully developed (mature) celiac disease. And after several months on a GF diet, they won't even detect mature celiac disease.
Tex
Usually the effects of MC are not that severe. Gluten sensitivity destroys the enamel on the teeth and thereby makes them vulnerable to decay. I always had great teeth, but several years before my MC symptoms presented my teeth headed south. By the time my MC symptoms became severe, going to a dentist was a waste of time. After I changed my diet and healed, my teeth stabilized and caused no further trouble.
I don't know of any other test that's reliable. The celiac screening tests used by doctors (serum tests) are extremely insensitive and unreliable. It will only detect fully developed (mature) celiac disease. And after several months on a GF diet, they won't even detect mature celiac disease.
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.
Sure. It's available here in any digital format (for any digital device) free of charge.
https://www.smashwords.com/books/view/665808
Amazon charges $.99 for digital and $3.85 for a printed copy, but I get no royalty.
https://www.amazon.com/Pancreatic-Cance ... 0985977248
There is a link between certain gum disease bacteria species and Pancreatic Cancer. The details are in the book.
Tex
https://www.smashwords.com/books/view/665808
Amazon charges $.99 for digital and $3.85 for a printed copy, but I get no royalty.
https://www.amazon.com/Pancreatic-Cance ... 0985977248
There is a link between certain gum disease bacteria species and Pancreatic Cancer. The details are in the book.
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.
For fats, most can tolerate coconut oil. Put on your green beans and proteins. Get the extra virgin and it does not have coconut flavor.
After you are further along in healing most can tolerate olive oil. Get one made in California to ensure it is not adulterated.
Most of us end up ditching oat meal (even the GF one). Typical breakfasts are something like protein, overcooked veggie, and potato or rice.
Welcome the forum.
After you are further along in healing most can tolerate olive oil. Get one made in California to ensure it is not adulterated.
Most of us end up ditching oat meal (even the GF one). Typical breakfasts are something like protein, overcooked veggie, and potato or rice.
Welcome the forum.
Brandy,
I started putting Extra Virgin Olive Oil on everything that my taste can tolerate it on. Read it helps to increase fat absorption, along with taking a Coconut Gel pill digestive enzyme supplement to also help with absorption and added enzymes.
Breakfast is a slippery slope for an easy/quick protein and filler most days. I work 12 hr days, including drive time and being able to eat potatoes, rice, or a veggie isn’t happening. A unripe banana, possibly an orange and a Nestles “Pro-Nourish” Protein drink is the usual.
Thanks for the reply!
I started putting Extra Virgin Olive Oil on everything that my taste can tolerate it on. Read it helps to increase fat absorption, along with taking a Coconut Gel pill digestive enzyme supplement to also help with absorption and added enzymes.
Breakfast is a slippery slope for an easy/quick protein and filler most days. I work 12 hr days, including drive time and being able to eat potatoes, rice, or a veggie isn’t happening. A unripe banana, possibly an orange and a Nestles “Pro-Nourish” Protein drink is the usual.
Thanks for the reply!