I sound like the TV show, right... "What Would YOU Do?"
I went back on Entocort July 20th (alternated between 2 and 3 a day). A week ago I dropped down to a straight 2 a day and am still doing fine. (Also gave up gluten at the same time). I'm debating whether I should now drop down to 1 day or stay at 2 a while longer. Here are my two concerns:
Is the Entocort helping me to heal while I continue to improve my diet, IOW, is there some advantage and possibly better healing in staying on the Entocort for a while while I adjust my diet? Of course I want off of these ASAP but it would be silly to rush it by a few weeks if it's helping me. I need to learn patience (hah - wish me luck!)
I am flying to the opposite coast on September 2 to visit daughter and new grandchild and don't want to be having any issues either during the flights or during my visit, so should I just stay at 2 pills a day until I get back from Oregon or should I try to be weaned to 1 by the time I leave?
Really torn, it's a timing thing I guess. Don't forget, I still suspect that whenever I change my Entocort dose I swear it affects my TSH levels and thyroid meds. (Nothing's easy with these diseases!)
Thanks in advance for your thoughts.
Sue
What would you do? (wean now or later?)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
What would you do? (wean now or later?)
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Yes, the glucocorticorticoids (including corticosteroids such as budesonide) suppress TSH, and T4 binding (effectiveness).
DRUGS THAT SUPPRESS TSH OR CAUSE CENTRAL HYPOTHYROIDISM
Corticosteroids actually delay healing, but it's probably not a major effect. A minimum dose of budesonide is effective insurance for a trip, if you feel you need it. When you wean off the drug there may be a rebound effect due to mast cell population level rebuilding that can cause a relapse if weaning is skipped or done too quickly.
That didn't really answer your questions, but it provides some background information for your consideration.
Tex
DRUGS THAT SUPPRESS TSH OR CAUSE CENTRAL HYPOTHYROIDISM
Corticosteroids actually delay healing, but it's probably not a major effect. A minimum dose of budesonide is effective insurance for a trip, if you feel you need it. When you wean off the drug there may be a rebound effect due to mast cell population level rebuilding that can cause a relapse if weaning is skipped or done too quickly.
That didn't really answer your questions, but it provides some background information for your consideration.
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.
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Gabes-Apg
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listen to your body.
only you can tell when it is time to wean, if the motions start getting slower / harder etc then it is time to reduce the dosage.
if the stress of travelling and change in routine causes stools to become looser, don't reduce the dosage
it will take at least 8 weeks of good doses of the Vit D3 and magnesium to start to optimise healing. Until then there is no point overthinking the healing process.
in the meantime stick to the safe eating plan, and lots of relaxation type activities to minimise anxiety.
only you can tell when it is time to wean, if the motions start getting slower / harder etc then it is time to reduce the dosage.
if the stress of travelling and change in routine causes stools to become looser, don't reduce the dosage
it will take at least 8 weeks of good doses of the Vit D3 and magnesium to start to optimise healing. Until then there is no point overthinking the healing process.
in the meantime stick to the safe eating plan, and lots of relaxation type activities to minimise anxiety.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Thanks for the information and the link, Tex. My docs tell me they don't think the Entocort does anything to my Synthroid or thyroid levels but I know my body and know that it has some kind of effect - I just never knew how or why.
Thanks for the "patience" reminder, Gabes. I've been off gluten for a week, I should be healed TODAY, right????
Yes, the travel and change of environment, time zones will cause anxiety so I definitely should not be totally off of the Entocort when I travel. This week I will start alternating between one pill and two and see how that goes, then maybe be down to 1 a day when I travel.
Sue
Thanks for the "patience" reminder, Gabes. I've been off gluten for a week, I should be healed TODAY, right????
Yes, the travel and change of environment, time zones will cause anxiety so I definitely should not be totally off of the Entocort when I travel. This week I will start alternating between one pill and two and see how that goes, then maybe be down to 1 a day when I travel.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Sue, that is good you didn't notice much difference going from 3 to 2. I get looser with each decline in dosage. I wouldn't rush it if you are doing well, and prob best to not try and get off until after your travels. People often revert after coming off, esp after a short run on it. Most people stay on 3-6 months.
Thanks, you're probably right.... I'm always short on patience and hate taking steroids but the side affects really aren't that bad this time (maybe those side affects were a result of gluten instead of the steroids!)lisaw wrote:Sue, that is good you didn't notice much difference going from 3 to 2. I get looser with each decline in dosage. I wouldn't rush it if you are doing well, and prob best to not try and get off until after your travels. People often revert after coming off, esp after a short run on it. Most people stay on 3-6 months.
I should probably leave well-enough alone until after my trip. Thanks for the reminder.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Dear Sue,
I hope you had a great trip. I have had M.C. for 5 years,last year I rarely used entrecort but now I am finding that after I go off it my stomach gets weak.I am on 2 a day for one week and then I think I will stay on 1 aday for a while. Iam watching my diet of course,but I can not get rid of that sometimes week stomach.I am discouraged because I was sure with diet I could get better,Iam or was a healthy person always working out, watching my diet,eating salads with every meal very little meat and now I cannot eat a raw vegetable,and have started to eat meat.I gave up my coffee,also I loved to bake.How my life has changed.
I hope you had a great trip. I have had M.C. for 5 years,last year I rarely used entrecort but now I am finding that after I go off it my stomach gets weak.I am on 2 a day for one week and then I think I will stay on 1 aday for a while. Iam watching my diet of course,but I can not get rid of that sometimes week stomach.I am discouraged because I was sure with diet I could get better,Iam or was a healthy person always working out, watching my diet,eating salads with every meal very little meat and now I cannot eat a raw vegetable,and have started to eat meat.I gave up my coffee,also I loved to bake.How my life has changed.
Thanks... my trip doesn't start for three more weeks. I, too, love eating healthy and I hate it when I have to give up fruits, veggies, smoothies, etc. because my stomach can't handle it. Definitely a life-changing condition, but it could always be worse (that's what I keep reminding myself).Erica wrote:Dear Sue,
I hope you had a great trip. I have had M.C. for 5 years,last year I rarely used entrecort but now I am finding that after I go off it my stomach gets weak.I am on 2 a day for one week and then I think I will stay on 1 aday for a while. Iam watching my diet of course,but I can not get rid of that sometimes week stomach.I am discouraged because I was sure with diet I could get better,Iam or was a healthy person always working out, watching my diet,eating salads with every meal very little meat and now I cannot eat a raw vegetable,and have started to eat meat.I gave up my coffee,also I loved to bake.How my life has changed.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Dear Sue,
I am thinking of doing the enter lab tests, did you do panels A and C.I have tried natural paths, healers,acupuncture. It is getting expensive (I am Canadian )so Ì
would try to do just the most important panels.Now I am on 2 entrecorts a day ,so I do not know if the test is effective.Did the results help you.
I am thinking of doing the enter lab tests, did you do panels A and C.I have tried natural paths, healers,acupuncture. It is getting expensive (I am Canadian )so Ì
would try to do just the most important panels.Now I am on 2 entrecorts a day ,so I do not know if the test is effective.Did the results help you.
Hi Erica.
I stubbornly refused to do the Enterolab testing for MANY years, first because I wasn't sure it was legit or reliable, and secondly because of the price. But after trying everything else for years I finally had to wave the white flag of defeat, bite the bullet, and do the test. I still wasn't sure I was going to "trust" what the results showed but when I saw how high my sensitivity to gluten was, it convinced me to give it up immediately, "just to see".
I am still on Entocort (2 a day) and won't try weaning down until mid-September but I feel better in many different ways (besides a calm-ness in my gut that I've not felt in decades). Yes, I did the bundle package, I forget what they call it but I think it's $539.
Very glad I did because the things they said I was sensitive to, I seem to be sensitive to! Who knew?!?!? Is it 100% accurate? Of course not, but hardly anything is. I'd say if you can afford it, do it. Wish I hadn't been so stubborn and waited so long.
Sue
I stubbornly refused to do the Enterolab testing for MANY years, first because I wasn't sure it was legit or reliable, and secondly because of the price. But after trying everything else for years I finally had to wave the white flag of defeat, bite the bullet, and do the test. I still wasn't sure I was going to "trust" what the results showed but when I saw how high my sensitivity to gluten was, it convinced me to give it up immediately, "just to see".
I am still on Entocort (2 a day) and won't try weaning down until mid-September but I feel better in many different ways (besides a calm-ness in my gut that I've not felt in decades). Yes, I did the bundle package, I forget what they call it but I think it's $539.
Very glad I did because the things they said I was sensitive to, I seem to be sensitive to! Who knew?!?!? Is it 100% accurate? Of course not, but hardly anything is. I'd say if you can afford it, do it. Wish I hadn't been so stubborn and waited so long.
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Dear Sue
Thank you ,I also have tried everything else.I am also on 2 entrecorts a day to achieve the calmness in my stomach instead of the rumbling is amazing.My daughter just had twins and I mentioned was diagnosed with chrones and arthitis so she really needs my help,there is no time for me to be sick.What do you eat for breakfast,this is my hardest meal to find options.Lunch and diner are the same protein and steamed vegetables.I am so nervous to go off my entrecorts, I think I will stay on 1 for a while.I started oils for calming my nerves and stomach after 6 years of a Rolla caster ride.I will tell you if they help my stomach.Enjoy your new grandchild.Wish you lived close I could meet you for a cup of tea.
Thank you ,I also have tried everything else.I am also on 2 entrecorts a day to achieve the calmness in my stomach instead of the rumbling is amazing.My daughter just had twins and I mentioned was diagnosed with chrones and arthitis so she really needs my help,there is no time for me to be sick.What do you eat for breakfast,this is my hardest meal to find options.Lunch and diner are the same protein and steamed vegetables.I am so nervous to go off my entrecorts, I think I will stay on 1 for a while.I started oils for calming my nerves and stomach after 6 years of a Rolla caster ride.I will tell you if they help my stomach.Enjoy your new grandchild.Wish you lived close I could meet you for a cup of tea.
Dear Sue,
I am so happy to know someone who is going through the same thing as me. After 5 years this year I
I am taking the most entrecort s,I was a healthy person who never took pills (how ironic now).I am wondering because I am taking more entrecort, I should ask Gabes,my levels of vitamin D were in the normal range wonder if I should take more?Are you taking magnesium?I take 10 thousand vit.D a week.I use the spray for magnesium.
Best regards
Erica
I am so happy to know someone who is going through the same thing as me. After 5 years this year I
I am taking the most entrecort s,I was a healthy person who never took pills (how ironic now).I am wondering because I am taking more entrecort, I should ask Gabes,my levels of vitamin D were in the normal range wonder if I should take more?Are you taking magnesium?I take 10 thousand vit.D a week.I use the spray for magnesium.
Best regards
Erica
Erica,
That's not near enough vitamin D. You need 5,000 or 6,000 IU of vitamin D every day. When I was recovering, my breakfast was often the same food that I ate for the other meals.
Tex
That's not near enough vitamin D. You need 5,000 or 6,000 IU of vitamin D every day. When I was recovering, my breakfast was often the same food that I ate for the other meals.
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.
During the work week I either don't eat breakfast at all (just LOTS of water and a cup of coffee or two) but on those mornings when I'm really hungry I have two hard-boiled eggs. That holds me till lunch. Actually, this morning I didn't eat breakfast but about 11:00 I was STARVING so I had a cup of bone broth.
On weekends, I treat myself to a breakfast of hard-boiled eggs, 2 or 3 sausage links, and a gluten-free muffin with jam.
I take 5,000 IU of Vitamin D every day (actually now 6,000 IU because I recently added a multi-vitamin to my regimen). I JUST started playing with magnesium and found out quickly that I need to experiment with it SLOWLY. I started with the oral Remag but it gives me almost immediate diarrhea. So I bought some magnesium lotion but found I'm not using it much because I don't like the sticky residue it leaves. So a few days ago I poured some liquid Remag in a spray bottle and was spraying it on my skin. Since it seems so harmless and we all know we need more magnesium, at lunch yesterday I sprayed on a LOT while I was heating my lunch. About 15 minutes later I had to frantically rush to the bathroom, but worse, I was almost comatose for the rest of the day. I had to get back to the office because I was orienting a new employee but it was literally a struggle to walk from the car to the office building.... my muscles were weak and tensing. My thought process was affected, and when people spoke to me or, worse yet, I had to answer them, it was truly a struggle to look engaged. I just wanted to go into the rest room and rest my head somewhere but had to push through. It was the worst "fatigue" I have ever experienced.
Was that the magnesium spray? Who knows. But the timing and the two extreme symptoms (diarrhea and debilitating fatigue) are symptoms of too much magnesium. Needless to say I'm home for lunch now and am NOT spraying any on me today. :) Slow and steady needs to be my mantra but patience has never been a virtue. And I do nothing in moderation or in a slow way. :(
Hope this helps. Feel better!
Sue
On weekends, I treat myself to a breakfast of hard-boiled eggs, 2 or 3 sausage links, and a gluten-free muffin with jam.
I take 5,000 IU of Vitamin D every day (actually now 6,000 IU because I recently added a multi-vitamin to my regimen). I JUST started playing with magnesium and found out quickly that I need to experiment with it SLOWLY. I started with the oral Remag but it gives me almost immediate diarrhea. So I bought some magnesium lotion but found I'm not using it much because I don't like the sticky residue it leaves. So a few days ago I poured some liquid Remag in a spray bottle and was spraying it on my skin. Since it seems so harmless and we all know we need more magnesium, at lunch yesterday I sprayed on a LOT while I was heating my lunch. About 15 minutes later I had to frantically rush to the bathroom, but worse, I was almost comatose for the rest of the day. I had to get back to the office because I was orienting a new employee but it was literally a struggle to walk from the car to the office building.... my muscles were weak and tensing. My thought process was affected, and when people spoke to me or, worse yet, I had to answer them, it was truly a struggle to look engaged. I just wanted to go into the rest room and rest my head somewhere but had to push through. It was the worst "fatigue" I have ever experienced.
Was that the magnesium spray? Who knows. But the timing and the two extreme symptoms (diarrhea and debilitating fatigue) are symptoms of too much magnesium. Needless to say I'm home for lunch now and am NOT spraying any on me today. :) Slow and steady needs to be my mantra but patience has never been a virtue. And I do nothing in moderation or in a slow way. :(
Hope this helps. Feel better!
Sue
Sue
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!
Diagnosed November 2004, Used Asacol and Lialda, sometimes worked, sometimes made it worse. Entocort always works but hate it. Remission only lasts 3-6 months and then back on Entocort. Enterolab test July 2017, now gluten free. Time will tell!