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Hi Everyone, I can't believe how long it's been since I've posted. The past month and a half have been crazy busy at school and with family. I've checked in a few times to read and to feel your support. It's always so comforting to know you are all there. I've been doing extremely well on entocort and diet. I've been on it a little over two months now, but the big change just occurred in the past 2 weeks. I'm actually beginning to feel what normal used to be for me. I saw my doctor after being on it for a month, and he suggested I stay on the full dose (9mg) 2 more months and then begin to taper off. Do you think that is long enough? I've got less than 2 weeks and then I'll hit the tapering off date he suggested. Even though he suggested that date, he gave me a full year's script to "play around with" while I'm healing. With all your experience, what is your opinion about tapering off. I'm doing so well, I don't want to start too soon.
Tex and others I really value your opinion. You've helped me get this far and I'm soooo thankful. JoAnn
Hi Everyone-Appreciate your advice
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi JoAnn,
It's great to hear that you're doing so well. That's a good question, and the answer, of course, is tough to say, because we are all different. In general, though, my impression, is that most members are not able to taper the dosage as quickly as their GI docs suggest. I don't believe that most doctors realize how much healing actually has to take place, before the GI tract returns to normal. I'm not sure if anyone here has been able to do it in 2 months. Most seem to take 6 months to a year. Once the tapering process is completed, though, 8 weeks seems to be the magic number, for the test of remission. IOW, if you can remain symptom-free, for at least 8 weeks after discontinuing Entocort completely, they you are probably out of the woods.
Hopefully some members who have actually been through the process will offer their experiences. Surely, some patients must be able to taper the dose that quickly, or so many GI docs wouldn't suggest it.
Thanks for the update,
Tex
It's great to hear that you're doing so well. That's a good question, and the answer, of course, is tough to say, because we are all different. In general, though, my impression, is that most members are not able to taper the dosage as quickly as their GI docs suggest. I don't believe that most doctors realize how much healing actually has to take place, before the GI tract returns to normal. I'm not sure if anyone here has been able to do it in 2 months. Most seem to take 6 months to a year. Once the tapering process is completed, though, 8 weeks seems to be the magic number, for the test of remission. IOW, if you can remain symptom-free, for at least 8 weeks after discontinuing Entocort completely, they you are probably out of the woods.
Hopefully some members who have actually been through the process will offer their experiences. Surely, some patients must be able to taper the dose that quickly, or so many GI docs wouldn't suggest it.
Thanks for the 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.
JoAnn,
The last time I was on entocort, I took it for 3 months and then tapered down. As I look back on things then (and even now) I realize that the hugh flare was due to an overdose of popcorn. Evidently the hulls do a number on me. I have a neighbor with active MC who has never been able to get down to 1 pill a day. Each of us is different on this journey. I hope that you recover enough in the 3 months to be able to taper down.
Jan
The last time I was on entocort, I took it for 3 months and then tapered down. As I look back on things then (and even now) I realize that the hugh flare was due to an overdose of popcorn. Evidently the hulls do a number on me. I have a neighbor with active MC who has never been able to get down to 1 pill a day. Each of us is different on this journey. I hope that you recover enough in the 3 months to be able to taper down.
Jan
JoAnn!
Fantastic news! WAHOO!!!!!
I agree with those who say you may need 6 mo. to a year on the Entocort (assuming that you are also continuing your diet). Especially since you have multiple intolerances. Perhaps your doc will listen if you tell him/her that this is the experience of MCers here on this board. If your GI doc is resistant, your primary care doc may be willing to continue the Entocort for a longer period - we have found them to be more flexible in many cases.
Good luck, and keep up the good work!
Love,
Polly
Fantastic news! WAHOO!!!!!
I agree with those who say you may need 6 mo. to a year on the Entocort (assuming that you are also continuing your diet). Especially since you have multiple intolerances. Perhaps your doc will listen if you tell him/her that this is the experience of MCers here on this board. If your GI doc is resistant, your primary care doc may be willing to continue the Entocort for a longer period - we have found them to be more flexible in many cases.
Good luck, and keep up the good work!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Thanks Tex, Jan, Kathy, and Polly. My "gut" feeling is to stay on it longer and I think you're right that 6 months minimum at full dose until I start to tweak it. Thanks for the cheer Polly. I'm still not taking anything for granted, but I'm a heck of a lot better off than I was a few months ago. Thanks all, JoAnn
Hi JoAnn,
I'm so happy to read that you are nearly back to living a normal life. It's a great feeling to feel normal again.
I have found that if I have any problems on a dose of Entocort, the problems increase once I reduce the dose. I either have to increase the dose again or figure out what new food is causing me problems.
Entocort does a good job of holding the immune system at bay for the lesser intolerances and irritants, but as you reduce your dosage, you may find that other foods need to be eliminated.
I don't reduce the dosage unless I'm having normal BMs for about 4-6 weeks. Consider those weeks your testing period to make sure that you aren't reacting to a new food. If I've done well during that time, then I'll eliminate one pill a day. The testing period can take a while.
I reduced to 2 pills a day after 3 1/2 months. I was on 2 pills a day for about 9 months before I could finally go down to 1 pill per day. I was on 1 pill per day for about 6 months. I've just stopped taking it completely after being on 1 pill every other day for the past 5 weeks. I'm keeping my fingers crossed. If I have any problems, I'm going back to 1 pill every other day. I've have found many additional irritants, hopefully not intolerances, along the path to remission.
It's hard to predict how you will do because we are all different as Jan wrote. Hopefully, you'll sail right through.
Gloria
I'm so happy to read that you are nearly back to living a normal life. It's a great feeling to feel normal again.
I have found that if I have any problems on a dose of Entocort, the problems increase once I reduce the dose. I either have to increase the dose again or figure out what new food is causing me problems.
Entocort does a good job of holding the immune system at bay for the lesser intolerances and irritants, but as you reduce your dosage, you may find that other foods need to be eliminated.
I don't reduce the dosage unless I'm having normal BMs for about 4-6 weeks. Consider those weeks your testing period to make sure that you aren't reacting to a new food. If I've done well during that time, then I'll eliminate one pill a day. The testing period can take a while.
I reduced to 2 pills a day after 3 1/2 months. I was on 2 pills a day for about 9 months before I could finally go down to 1 pill per day. I was on 1 pill per day for about 6 months. I've just stopped taking it completely after being on 1 pill every other day for the past 5 weeks. I'm keeping my fingers crossed. If I have any problems, I'm going back to 1 pill every other day. I've have found many additional irritants, hopefully not intolerances, along the path to remission.
It's hard to predict how you will do because we are all different as Jan wrote. Hopefully, you'll sail right through.
Gloria
You never know what you can do until you have to do it.
Hi Gloria, thanks for the great advice. I'm grateful to have an entocort "mentor". That is so wonderful that you have been able to stop the meds. I hope this is it for you. Also, thanks for tipping me off about Harmons. I hadn't shopped there for a while and was amazed at all the gf and other "free" products they now carry. Maybe they were always there, but I never needed them before. I was really thrilled to find the Enjoy choc. chips. there. I hope we both have some time to meet up when you visit again. I am going to follow your example about tapering off and checking for sensitivities. I think I might have a problem with corn, not bad but I'm not as good when I've eaten corn chips. This is such a journey and some days I am so sick of having such a limited diet, but the payoff is so worth it. Thanks again for the guidelines about entocort. I think I'll stay on the full dose a couple more months and then start experimenting. Take care, JoAnn