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Budesonide or Mesalazine!?
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Budesonide or Mesalazine!?
Hi! I am in a flare, the WD has came back for 3 days. Diarrea has never been so uncomfortable, the worst episode was 21 times and was immediately controlled with Rececadrotil. The main problem for me is the weight loss. Diarrea never has bothered me that much, since my diagnosis in july 2018 just to strong episodes. The last year I tool budosenide 3 months, without tappering!!!! And gain my weight back! As soon as I stopped the weight loss began. Diarrea came back after a year (the 21 Wd I mentioned before) las week Inhad diarrea again and once again rececadrotil immediatly stopped it. I hav been eating turkey, lamb, rice, coconut oil, chicken, beef, pottaoes, sweet Potatoes. I really sacry about my weight as I keep losing it 1 pound per week. So my question is, as the D is not that bad. Just my weight loss, could it be possible to take mesalazine instead of budosenide to help with my weight loss?
Ingrid
I forgot to mentioned that mu LC was diagnosed while taking accutane. And Although I love budosenide i think it made my hair to fall out and also I habe read that mesalazine can be taken formlonger periods. All my family is diabetic and Inhave insuline resistance, that is why I am trying to find out if you think mesalazine can Help me. I come here because my doctors keep telling me my weight loss is due to anxiety and send me to drink Ensure (high caloric drinks) I have to tell you that since my diagnosed never been more calm that this time. Just need my weight backy
Ingrid
Mesalamine is not very effective. It will not cause weight gain like budesonide. It's usually very slow to work (may take weeks).
Ensure and most high calorie drinks are loaded with casein. Drink pure coconut milk (not diluted), sold in a can in most places. It's high calorie.
We all lose weight because of MC, not anxiety. MC wastes nutrients (and calories) due to malabsorption.
Tex
Ensure and most high calorie drinks are loaded with casein. Drink pure coconut milk (not diluted), sold in a can in most places. It's high calorie.
We all lose weight because of MC, not anxiety. MC wastes nutrients (and calories) due to malabsorption.
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.
Yes, but wean off budesonide very slowly — that's the secret to staying in remission when ending a budesonide treatment. The dosage taper that doctors recommend is too fast, and it doesn't go far enough for most MC patients to be able to stay in remission.
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 Tex,
What do you think is a good taper for Budesonide? My NP keeps changing her mind on how I should taper:
First she said 2 months 9 mg, then 10 days 6 mg, then 10 days 3 mg, then 10 days 3 mg every other day, for a total of 3 months.
Then she changed it to 1 month 9 mg, then 1 month 6 mg, then 1 month 3 mg, for a total of 3 months.
Now she's changed it to 2 months 9 mg (because I needed to take it longer), then 1 month 6 mg, then 1 month 3 mg, for a total of 4 months.
I am wondering if I should be taking it for an additional 5th month, maybe 3 mg every other day, to taper more slowly? I want to do what she says but sometimes she will change her mind if I bring up a different idea. She also mentioned that if the WD should come back during the weaning, then I should go back to the 9 mg for 2-4 weeks. Is that safe? I keep reading that patients shouldn't be on the Budesonide high dose for longer than 2 months due to risk of adrenal gland issues or something, but not sure.
Thanks!
What do you think is a good taper for Budesonide? My NP keeps changing her mind on how I should taper:
First she said 2 months 9 mg, then 10 days 6 mg, then 10 days 3 mg, then 10 days 3 mg every other day, for a total of 3 months.
Then she changed it to 1 month 9 mg, then 1 month 6 mg, then 1 month 3 mg, for a total of 3 months.
Now she's changed it to 2 months 9 mg (because I needed to take it longer), then 1 month 6 mg, then 1 month 3 mg, for a total of 4 months.
I am wondering if I should be taking it for an additional 5th month, maybe 3 mg every other day, to taper more slowly? I want to do what she says but sometimes she will change her mind if I bring up a different idea. She also mentioned that if the WD should come back during the weaning, then I should go back to the 9 mg for 2-4 weeks. Is that safe? I keep reading that patients shouldn't be on the Budesonide high dose for longer than 2 months due to risk of adrenal gland issues or something, but not sure.
Thanks!
Sarah
Lymphocytic colitis since Feb 2019
Lymphocytic colitis since Feb 2019
Hi Sarah,
Probably the most important thing is to stay on budesonide long enough for the diet to be controlling the symptoms well. If you taper too fast, and have to start over, it's usually more difficult (not easier) to regain control than it was the last time. Once you get down to 6 mg (two capsules) each day (or less), the risk of adrenal damage from extended budesonide usage goes way down. By the time you get to 3 mg (one capsule) per day, that risk should be minimal.
To save writing, I copied the response below from one of my responses in this thread, which I wrote four days ago (the poster's wife has MC):
Tex
Probably the most important thing is to stay on budesonide long enough for the diet to be controlling the symptoms well. If you taper too fast, and have to start over, it's usually more difficult (not easier) to regain control than it was the last time. Once you get down to 6 mg (two capsules) each day (or less), the risk of adrenal damage from extended budesonide usage goes way down. By the time you get to 3 mg (one capsule) per day, that risk should be minimal.
To save writing, I copied the response below from one of my responses in this thread, which I wrote four days ago (the poster's wife has MC):
But as I mentioned, that taper plan can be modified to allow for how secure the recovery seems to be going.Many doctors may disagree with us, because they go by the label. But according to published research, 85 % of their MC patients suffer a relapse after ending the treatment. We have found (by accumulated experience) that the safest, surest policy (to prevent a relapse when ending a budesonide treatment) is to stay on the diet and follow this dose-tapering plan:
Stay on the full dose for a full two months (longer, if the diarrhea is still unresolved), (or until the symptoms of constipation show up, whichever comes first), and then step down the dose to 6 mg (2 capsules) per day, for 3 or 4 weeks, before stepping the dose down to 3 mg (1 capsule) per day (for 3 or 4 weeks). Then go to 1 capsule every other day for 2 or 3 weeks, followed by a capsule every third day, for 2 or 3 weeks, and so fourth and so on. Some people go as far as a capsule every six days, and some stop much sooner, (depending on how well they feel their recovery is going).
You can alter the times according to her degree of stability, just don't take huge shortcuts, because if she relapses, you'll almost surely have to go back to square one and start over with 3 capsules per day. This routine has proven to be very reliable, and it will prevent a relapse in probably 90–95 % of cases. If her remission seems to be slipping, adding an antihistamine each day for a few weeks may save the day. Some people add the antihistamine (for a few weeks) after taking the last budesonide capsule just as insurance against a relapse.
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, Ted, for that wonderful explanation!
I had just started tapering the dose to 6 mg three days ago, however, I am certainly not constipated. The stools have mostly been loose once a day (this is usually the norm for me). This is an improvement before starting the Budesonide, when I had WD every day, once a day. Although, I did I have a pretty bad flare about 6 days ago.
Since there is still diarrhea, should I go back to the 9 mg until the stools are completely solid? Or are the semi-loose stools good enough to taper?
Apologies for the specific questions... I just don't want to start tapering sooner than I should and have all this be for nothing. My NP does not seem to want me to be on the 9 mg for longer than 2 months but I want to do the right thing (she seems undecided about quite a bit).
I had just started tapering the dose to 6 mg three days ago, however, I am certainly not constipated. The stools have mostly been loose once a day (this is usually the norm for me). This is an improvement before starting the Budesonide, when I had WD every day, once a day. Although, I did I have a pretty bad flare about 6 days ago.
Since there is still diarrhea, should I go back to the 9 mg until the stools are completely solid? Or are the semi-loose stools good enough to taper?
Apologies for the specific questions... I just don't want to start tapering sooner than I should and have all this be for nothing. My NP does not seem to want me to be on the 9 mg for longer than 2 months but I want to do the right thing (she seems undecided about quite a bit).
Sarah
Lymphocytic colitis since Feb 2019
Lymphocytic colitis since Feb 2019
Tapering the dose with ongoing diarrhea is probably not going to work, but you're eventually going to run out of budesonide capsules, aren't you? If you took the full dose for three months already, and you still have diarrhea, something's not working right. If your diet is sound (with no cross-contamination), you may not be able to get below 2 capsules per day, without returning to WD, but that's pretty speculative at this point.
What do you mean, "this is usually the norm for me"? Are you referring to pre or post MC. If you've had diarrhea all your life, then the taper may be working, because regular (osmotic) diarrhea may be as good as you can expect to get. If you've had diarrhea only since the advent of MC, then it's too soon to be tapering the dose, because your stool should be formed.
Tex
What do you mean, "this is usually the norm for me"? Are you referring to pre or post MC. If you've had diarrhea all your life, then the taper may be working, because regular (osmotic) diarrhea may be as good as you can expect to get. If you've had diarrhea only since the advent of MC, then it's too soon to be tapering the dose, because your stool should be formed.
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.
Tex, I did not tapoering, the doxtor never told me. I was on 9 mg three months and then siddenly stopped it. Do you think that is the reason This flare up has been worst than the firts time? I mean agter stopping budesonide never been able to be good. I was not on diet as I discovered this forum until May 2019
Ingrid
I mean that going once a day is normal for me, since MC, but it is always loose (or WD 3-4 times a day on bad days). Pre-MC was totally normal stools (never loose).
I have been on the 9 mg for 2 months. Started tapering to 6 mg 3 days ago.
I am also concerned that something might be wrong with my diet. The Budesonide has helped but it took a long time to even notice a little improvement. It's Like it is "struggling" to work. Like something I continuously eat that is causing lingering inflammation that I just can't pinpont.
I am eating lots of white rice (jasmine) and white potatoes. Then I have sweet potatoes once or twice a week, occasional avocados, occasional greenish bananas, chicken and/or turkey daily, cooking in olive oil and coconut oil, sometimes walnut and cashew butter, and almond milk and Rice Chex.
My Entrolab test showed no reaction to any of these, except for +1 to rice and +2 to almonds (with total other food score 13). Because I eat so much rice and potatoes, I am wondering if these carbs are what is keeping some inflammation? I am afraid to do a trial without them because they are the only thing that is maintaining my weight right now, but I suppose I may have to in order to figure out what's wrong. I'm not sure what else I can try.
I have been on the 9 mg for 2 months. Started tapering to 6 mg 3 days ago.
I am also concerned that something might be wrong with my diet. The Budesonide has helped but it took a long time to even notice a little improvement. It's Like it is "struggling" to work. Like something I continuously eat that is causing lingering inflammation that I just can't pinpont.
I am eating lots of white rice (jasmine) and white potatoes. Then I have sweet potatoes once or twice a week, occasional avocados, occasional greenish bananas, chicken and/or turkey daily, cooking in olive oil and coconut oil, sometimes walnut and cashew butter, and almond milk and Rice Chex.
My Entrolab test showed no reaction to any of these, except for +1 to rice and +2 to almonds (with total other food score 13). Because I eat so much rice and potatoes, I am wondering if these carbs are what is keeping some inflammation? I am afraid to do a trial without them because they are the only thing that is maintaining my weight right now, but I suppose I may have to in order to figure out what's wrong. I'm not sure what else I can try.
Sarah
Lymphocytic colitis since Feb 2019
Lymphocytic colitis since Feb 2019
Yes. But if you were not following the diet during the budesonide treatment, you would not have been able to stay in remission, anyway. Stopping budesonide abruptly causes a huge mast cell reaction that triggers a relapse about 85 % of the time. Doctors don't seem to be able to understand that.Ingrid wrote:Do you think that is the reason This flare up has been worst than the firts time?
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.
Sarah,
You started tapering too soon, if you still had diarrhea. I would cut out the Rice Chex and almond milk while trying to recover. They will probably be OK after you're in remission, but might be a problem during the recovery period. Some imported olive oil is diluted with soy oil. Be sure you're using one of the safe imported brands, or a brand from California. Be sure that none of your medications or supplements contain any inactive ingredient that might cause a reaction. Most sources of vitamin E are derived from soy, and Vitamin E is added to a lot of items as a preservative. Look at the added ingredients in everything, such as the walnut butter and cashew butter. Be suspicious if that rice is "enriched". Look at what it's enriched with.
Tex
You started tapering too soon, if you still had diarrhea. I would cut out the Rice Chex and almond milk while trying to recover. They will probably be OK after you're in remission, but might be a problem during the recovery period. Some imported olive oil is diluted with soy oil. Be sure you're using one of the safe imported brands, or a brand from California. Be sure that none of your medications or supplements contain any inactive ingredient that might cause a reaction. Most sources of vitamin E are derived from soy, and Vitamin E is added to a lot of items as a preservative. Look at the added ingredients in everything, such as the walnut butter and cashew butter. Be suspicious if that rice is "enriched". Look at what it's enriched with.
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.
The mast cell reaction will slowly diminish if you stay on the diet. To prevent it from happening again when you taper a budesonide treatment, taper slowly — never stop a budesonide treatment suddenly.
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.