I have been on Entocort for 3 weeks at 9 mg a day. I know that you have a different idea than the MD's regarding what the proper length of time is for Entocort for best possible results? I believe I understand the taper but when do you go down to the lowest dose? Is it better to go high for longer? It has done what it is supposed to do I believe and I have been doing pretty well on my food avoidance program. I tested 210 for Gluten on the Enterolab even after being gluten free for 3 months. I am also doing some natural adjustments which hopefully will help too.
I am fearful of being on an a train that is going to collect autoimmune issues that won't allow me to live a fulfilling life with my family. (I have high thyroid antibodies that we are sitting on.. but a normal ANA/SED rates) I think I am having a PMS/Fear/Pity Party today. I do practice all the good stuff like meditation, exercise, and EFT to deal with letting go.. which obviously provide some necessary tools that are required for my periodic pity parties.
I have noticed that some of the cases on here are difficult but many of you have achieved a long term remission that has halted many issues.. true? I certainly have scoured many posts but sometimes they get overwhelming and hard to follow who has achieved and who is bouncing around with remission.
Choices...
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Hi Thumbs,
I share your concerns too about being in line for other autoimmune diseases. My hope (and plan) is that by being faithful to my food sensitivity diet --avoiding the big 4, for example-- will keep some of that from coming on.
As far as when to titrate Entocort, I took it for 4 1/2 months. In hindsight I could have titrated sooner than I did but once I started feeling better I sure didn't want to go back to being so horribly sick. The sign that I needed to reduce the dosage again was that I could get cramps and constipation. As soon as I dropped the dosage those symptoms would stop. And when they re-occured it was time to drop it again. You are smart to get your diet in order before you are off it completely. That will prevent relapse if you've eliminated your sensitivities before you stop the Entocort.
I don't think it's necessarily better to keep the high dose longer. You just have to adjust to what you think your body needs. Some of us get off completely but we have other members who are successful taking 1 Entocort capsule every 2 to 3 days.
Hope this helps.
Carol
I share your concerns too about being in line for other autoimmune diseases. My hope (and plan) is that by being faithful to my food sensitivity diet --avoiding the big 4, for example-- will keep some of that from coming on.
As far as when to titrate Entocort, I took it for 4 1/2 months. In hindsight I could have titrated sooner than I did but once I started feeling better I sure didn't want to go back to being so horribly sick. The sign that I needed to reduce the dosage again was that I could get cramps and constipation. As soon as I dropped the dosage those symptoms would stop. And when they re-occured it was time to drop it again. You are smart to get your diet in order before you are off it completely. That will prevent relapse if you've eliminated your sensitivities before you stop the Entocort.
I don't think it's necessarily better to keep the high dose longer. You just have to adjust to what you think your body needs. Some of us get off completely but we have other members who are successful taking 1 Entocort capsule every 2 to 3 days.
Hope this helps.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Thumbs,
It's good to read that you're doing well, and you're ready to reduce your Entocort dosage. As Carol pointed out, the initial stages of reducing the dosage don't seem to be critical, but many members feel that it's very helpful to stretch out the final stages of the dosage tapering process for a much longer time than their doctors recommend. IOW, they take 1 capsule per day for a couple of weeks or longer before tapering to a routine of alternating between one per day and one every other day. After doing that a while, then they go to one every other day for a while. Some think it beneficial to then alternate between one every second day and one every third day, before dropping the dosage to one every third day, etc.
I agree with Carol that careful attention to your diet should help to minimize your chances of developing other autoimmune diseases. It's also very helpful to keep your vitamin D level well up in the normal range. It appears that most people who develop the most autoimmune diseases have (or had at one time) very low vitamin D levels. Research verifies that a low vitamin D level weakens our immune system, and promotes the development of autoimmune diseases.
Tex
It's good to read that you're doing well, and you're ready to reduce your Entocort dosage. As Carol pointed out, the initial stages of reducing the dosage don't seem to be critical, but many members feel that it's very helpful to stretch out the final stages of the dosage tapering process for a much longer time than their doctors recommend. IOW, they take 1 capsule per day for a couple of weeks or longer before tapering to a routine of alternating between one per day and one every other day. After doing that a while, then they go to one every other day for a while. Some think it beneficial to then alternate between one every second day and one every third day, before dropping the dosage to one every third day, etc.
I agree with Carol that careful attention to your diet should help to minimize your chances of developing other autoimmune diseases. It's also very helpful to keep your vitamin D level well up in the normal range. It appears that most people who develop the most autoimmune diseases have (or had at one time) very low vitamin D levels. Research verifies that a low vitamin D level weakens our immune system, and promotes the development of autoimmune diseases.
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.
My doctor suggests a high dose until I'm constipated and then hold that dose for a while... I guess I wasn't sure what the right choice will be taper for a long time or hold at a high dose. I seem to be wary of doctors and i have switched a few times this one seems to listen so im holding now, listening is a big deal for me. My vitamin d was 56 last time but I need a new supplement as mine has soybean oil, any good suggestions? I was on 5,000 a day. Washington is not known for sun :) although today was beautiful which is always a blessing at your young ones softball game!!
Hi Thumbs!
I'm on low dose prednisone now (10 mgs), weaning off as I finish dealing with a flare of my autoimmune rash. From everyone I hear, slow and steady wins the race as far as tapering off steroids. I'm supposed to taper 1 mg a month now! I've enjoyed remission from MC while on the steroid, but I worry that it encourages growth of yeast, and that may mean a more furious return of MC when I'm off. I purchased a supplement called Yeast-Aid from Kirkmann Labs and plan to use it it combination with paleo diet (low starch, low sugar), to be in the best possible shape once I come off.
As far as developing more autoimmune diseases, mine started immediately after my first pregnancy and way before any obvious symptoms of MC. I had mild IBS, but nothing like the MC that hit several years later. My understanding is that my #1 goal should be to heal my permeable intestines. My doctor actually ordered an intestinal permeability blood test which I found very helpful. I hope to get it again, to see whare I'm at. In addition to gluten, the lectin in legumes and other grains are known to increase intestinal permeability, so they should be avoided, hence the paleo diet, which many here strive for.
Like Tex mentioned, I had a Vitamin D level of 17 when my first flare happened. I'm now in the 40s, taking 5,000 IU most days. Most people with Dermatomyositis have much more severe disease than me when they are flaring. I imagine I'm doing something right.
I'm on low dose prednisone now (10 mgs), weaning off as I finish dealing with a flare of my autoimmune rash. From everyone I hear, slow and steady wins the race as far as tapering off steroids. I'm supposed to taper 1 mg a month now! I've enjoyed remission from MC while on the steroid, but I worry that it encourages growth of yeast, and that may mean a more furious return of MC when I'm off. I purchased a supplement called Yeast-Aid from Kirkmann Labs and plan to use it it combination with paleo diet (low starch, low sugar), to be in the best possible shape once I come off.
As far as developing more autoimmune diseases, mine started immediately after my first pregnancy and way before any obvious symptoms of MC. I had mild IBS, but nothing like the MC that hit several years later. My understanding is that my #1 goal should be to heal my permeable intestines. My doctor actually ordered an intestinal permeability blood test which I found very helpful. I hope to get it again, to see whare I'm at. In addition to gluten, the lectin in legumes and other grains are known to increase intestinal permeability, so they should be avoided, hence the paleo diet, which many here strive for.
Like Tex mentioned, I had a Vitamin D level of 17 when my first flare happened. I'm now in the 40s, taking 5,000 IU most days. Most people with Dermatomyositis have much more severe disease than me when they are flaring. I imagine I'm doing something right.
1987 Mononucleosis (EBV)
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
2004 Hypomyopathic Dermatomyositis
2009 Lymphocytic Colitis
2010 GF/DF/SF Diet
2014 Low Dose Naltrexone
You are an inspiration with your attitude and advice. I have read several of your posts and see that you are taking care of a family and yourself (plus the people on this site).
I have found some interesting advice and am very curious about all the natural therapies. I am hopeful that I can hold a remission when I go off of the Entocort. I decided to go every with other day of alternating high/low doses for a week and then reduce to the lower level next week, hold for a week... and continue that pattern. The last time a MD had me take Entocort he told me to stop after 3 weeks as he said I was too young to have this and it was most likely caused by something else.... regardlesss once I stopped....
I think that is why I asked if anyone has held remission for a long time. I think I saw a couple that had some histalogical healings which is amazing but it seems more common to see ups and downs but I don't know if people don't always post the postive as you look for the most advice when you are struggling to find your answers.
Thank you for your time.
I have found some interesting advice and am very curious about all the natural therapies. I am hopeful that I can hold a remission when I go off of the Entocort. I decided to go every with other day of alternating high/low doses for a week and then reduce to the lower level next week, hold for a week... and continue that pattern. The last time a MD had me take Entocort he told me to stop after 3 weeks as he said I was too young to have this and it was most likely caused by something else.... regardlesss once I stopped....
I think that is why I asked if anyone has held remission for a long time. I think I saw a couple that had some histalogical healings which is amazing but it seems more common to see ups and downs but I don't know if people don't always post the postive as you look for the most advice when you are struggling to find your answers.
Thank you for your time.
Hi Thumbs,
I was another 4.5 month user of Entocort, off of it as of Jan 15th 2012. I generally stepped down a dose after three days of constipation. I think once I had to step back up. I believe history of this board is that it is better to go longer at the low doses. There are a lot of entocort users and ex users on this board, please post again at low dose before getting off if you have any questions. My usage was something like this but it varies widely by user----again I'd say listen to your body and constipation as a guide.. I was on 3 pills for around 3 weeks, 2 pills for around 3-4 weeks, 1 pill one month, 1 pill every other day one month, 1 pill every third day one month etc. Let your body be your guide. Don't stop Entocort use until you feel very comfortable with the diet and have nothing scheduled stressful for the 3 months after last pill. If you have stressful stuff ahead at low end taper stay on Entocort longer.
The last 6 weeks I feel like I"m heading into remission as I'm finally getting my energy back. The boyfriend and I are back to ballroom dance lessons and doing a class on "lifts and spins" i.e. like in dancing with the stars fancy stuff.
I believe there are a number of folks on this site that have held remission for 8-10 years or so and are only thrown out of remission by something like the death of a spouse i.e. a high level stressful situation. I think a lot of folks stop posting because they are in remission.
Heading into remission and staying in remission is an achievable goal but for some of us (like me) it's really taken around 18 months to really start feeling better. I'm just guessing here but I think a person younger than me (51) should see faster results. i.e. youth should have an advantage.
Stress reduction is also key. Regards, brandy
I was another 4.5 month user of Entocort, off of it as of Jan 15th 2012. I generally stepped down a dose after three days of constipation. I think once I had to step back up. I believe history of this board is that it is better to go longer at the low doses. There are a lot of entocort users and ex users on this board, please post again at low dose before getting off if you have any questions. My usage was something like this but it varies widely by user----again I'd say listen to your body and constipation as a guide.. I was on 3 pills for around 3 weeks, 2 pills for around 3-4 weeks, 1 pill one month, 1 pill every other day one month, 1 pill every third day one month etc. Let your body be your guide. Don't stop Entocort use until you feel very comfortable with the diet and have nothing scheduled stressful for the 3 months after last pill. If you have stressful stuff ahead at low end taper stay on Entocort longer.
The last 6 weeks I feel like I"m heading into remission as I'm finally getting my energy back. The boyfriend and I are back to ballroom dance lessons and doing a class on "lifts and spins" i.e. like in dancing with the stars fancy stuff.
I believe there are a number of folks on this site that have held remission for 8-10 years or so and are only thrown out of remission by something like the death of a spouse i.e. a high level stressful situation. I think a lot of folks stop posting because they are in remission.
Heading into remission and staying in remission is an achievable goal but for some of us (like me) it's really taken around 18 months to really start feeling better. I'm just guessing here but I think a person younger than me (51) should see faster results. i.e. youth should have an advantage.
Stress reduction is also key. Regards, brandy
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Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
have you read some of the posts in the 'success stories' area??
this will give you an indication of the timings and what was involved.....
given the various discussion in recent weeks - i can understand your fear about the autoimmune train. long story short, we are what we are, and what will happen will happen. some of it is out of our control. what happened and how we lived our lives to this point is what happened, we dont have a time machine to go back and change the course of our destiny!
Quite alot of it is genetics and the culture we were born into which is totally out of control!!!
I dont think even moving to a remote tribe in the highlands of a third world country away from modern life, medications, toxins will save us once this stuff has started
in all cases - taking care of ourselves, mind, body, heart and soul will optimise wellness and minimise issues.
you may be diagnosed with another condition, it is that mind, body, heart and soul factor that decides how much the symptoms of that condition may or may not affect us.
I am now 43, technically my MC is in remission and in the scheme of my day to day health is the least of my worries.
Since the MC diagnosis 3.5 years ago, I have had 6 other conditions diagnosed. Most are 'for life', no cure, no good treatment plan that works, other than managing my lifestyle and making the changes necessary to minimise the symptoms occuring.
this will give you an indication of the timings and what was involved.....
given the various discussion in recent weeks - i can understand your fear about the autoimmune train. long story short, we are what we are, and what will happen will happen. some of it is out of our control. what happened and how we lived our lives to this point is what happened, we dont have a time machine to go back and change the course of our destiny!
Quite alot of it is genetics and the culture we were born into which is totally out of control!!!
I dont think even moving to a remote tribe in the highlands of a third world country away from modern life, medications, toxins will save us once this stuff has started
in all cases - taking care of ourselves, mind, body, heart and soul will optimise wellness and minimise issues.
you may be diagnosed with another condition, it is that mind, body, heart and soul factor that decides how much the symptoms of that condition may or may not affect us.
I am now 43, technically my MC is in remission and in the scheme of my day to day health is the least of my worries.
Since the MC diagnosis 3.5 years ago, I have had 6 other conditions diagnosed. Most are 'for life', no cure, no good treatment plan that works, other than managing my lifestyle and making the changes necessary to minimise the symptoms occuring.
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Hi Thumbs. I would think you may be tired of hearing about all of our stories, but my Entocort journey was like many here. I was on 9 mg. for about a month. Constipation had me stepping down to 6 mg. for a month. Then I went down to one pill a day for a good two more months. This was the period of time that I really found out about smaller sensitivities and adjusted my diet. The last month was spent titrating down and then off completely. That was July 2012. I have never had to go back on and really feel like i am not going to have to unless something horrible happens in my life to send me in a tailspin. .... i think i continue to heal, but I do have my bad reactions here and there because I continue to "push the envelope" with food. If I stuck to the foods I ate when I was healing, I would probably be perfect, but sometimes social situations make it tough. So occasionally, i react to something I ate or drank, but the reaction is usually only a one time, next morning thing and then it's over. i consider that major progress!
it sounds like you are doing well. You are on your way to remission!
leah
it sounds like you are doing well. You are on your way to remission!
leah
Hi Leah, yes I know that you are one that did Entocort but you gave me a little more information which was what I was looking for regarding the time frame and reasons you started to taper. I am not constipated yet and that is what I probably should wait for as I have only gone a day between BMs. I don't want to be on the steroid but it was necessary for me so I trying to be cautious and not overly anxious and unrealistic about when my treatment should end. I tried an apple yesterday and it was a mushy morning so maybe I should hold on to the higher dose.. And no raw fruit of course. I miss eating them so i peeled the skin and tried-boo. I find my social life is pretty altered right now and I'm still figuring that out. I have avoided some recent family trips as the drive was pretty far and lots of food. I figured too much stress to be that high maintenance. :)
yeah, you should stay away from the raw fruits and veggies right now.I would have reacted in the beginning stages of healing to all of them. i waited 6 months to even try. I STILL can't eat much fruit, but thankfully can eat raw veggies. it makes me very happy to eat salad again. And coleslaw ( home made) !
I know what you mean about the social thing. For the first six months, i avoided certain get togethers, but I mostly just brought my own food or called ahead and made sure I had something to eat. Now, I sometimes roll the dice and just order the best i can when I am out. Tonight, I am going to a chinese restaurant to celebrate my mother-in-law's birthday. I will talk to the waiter and order something with no soy sauce or breading and eat it with steamed rice. Then I will keep my fingers crossed. Tomorrow, we are going to a street fair with my oldest daughter and her boyfriend. I will pack some snacks, but if I see something I can eat, i'll go for it. Things do get progressively better. Hang in there.
Leah
PS my "constipated" was if I skipped a day without going.
I know what you mean about the social thing. For the first six months, i avoided certain get togethers, but I mostly just brought my own food or called ahead and made sure I had something to eat. Now, I sometimes roll the dice and just order the best i can when I am out. Tonight, I am going to a chinese restaurant to celebrate my mother-in-law's birthday. I will talk to the waiter and order something with no soy sauce or breading and eat it with steamed rice. Then I will keep my fingers crossed. Tomorrow, we are going to a street fair with my oldest daughter and her boyfriend. I will pack some snacks, but if I see something I can eat, i'll go for it. Things do get progressively better. Hang in there.
Leah
PS my "constipated" was if I skipped a day without going.