Reporting - Feeling much better on Imuran
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Reporting - Feeling much better on Imuran
Hi All,
As some of you remember from earlier this year, upon my doctor's advice, I started a treatment protocol using Imuran as the primary treatment. I had been on Entocort since last summer when my LC was diagnosed. I have what they call a "refractory" case. Without medications, I kept landing in the hospital because I can't drink enough to stay ahead of the D.
Rather than stay on Entocort indefinitely, my doc recommended Imuran. After a lot of study, I decided to follow her advice. I started Imuran in January and took both Imuran and Entocort until April when my doc decided the Imuran was at full strength. Then, we started slowly tapering off the Entocort. I am now completely off Entocort. I have no D; Norman is a regular resident. The Imuran has also helped with the fatigue and pain.
While Imuran is the primary treatment, it is not the only thing I have been doing to get an edge on the LC. I have been GF (very careful) since October and have also avoided yeast, soy, eggs and milk (but to a lesser degree). I have also been on medical leave while we transitioned from Entocort to Imuran. (Although I have not been working, we have been remodeling the house, so I really have not had a "stress free" spring.) I have been off Entocort for about 20 days and I feel very well.
Before we started the Imuran, I tried to control the LC with diet, but when I tried to stop Entocort in December, the D came back when I dropped to 10 pills a week. I could not get past that threshold. I had no problem moving off Entocort while on the Imuran. I am glad to be off the steroid.
Thanks to all of you who have helped me as I walk my own path to wellness. I feel good and am very thankful for every good day!
Celie
As some of you remember from earlier this year, upon my doctor's advice, I started a treatment protocol using Imuran as the primary treatment. I had been on Entocort since last summer when my LC was diagnosed. I have what they call a "refractory" case. Without medications, I kept landing in the hospital because I can't drink enough to stay ahead of the D.
Rather than stay on Entocort indefinitely, my doc recommended Imuran. After a lot of study, I decided to follow her advice. I started Imuran in January and took both Imuran and Entocort until April when my doc decided the Imuran was at full strength. Then, we started slowly tapering off the Entocort. I am now completely off Entocort. I have no D; Norman is a regular resident. The Imuran has also helped with the fatigue and pain.
While Imuran is the primary treatment, it is not the only thing I have been doing to get an edge on the LC. I have been GF (very careful) since October and have also avoided yeast, soy, eggs and milk (but to a lesser degree). I have also been on medical leave while we transitioned from Entocort to Imuran. (Although I have not been working, we have been remodeling the house, so I really have not had a "stress free" spring.) I have been off Entocort for about 20 days and I feel very well.
Before we started the Imuran, I tried to control the LC with diet, but when I tried to stop Entocort in December, the D came back when I dropped to 10 pills a week. I could not get past that threshold. I had no problem moving off Entocort while on the Imuran. I am glad to be off the steroid.
Thanks to all of you who have helped me as I walk my own path to wellness. I feel good and am very thankful for every good day!
Celie
Celie,
That's great news. As I'm sure you're aware, Joe has also reported that the Imuran helps with fatigue and pain. Your refractory symptoms must have felt like a "runaway train," and you must be so relieved you've found a way to stop it.
I'm so glad you're feeling good - congratulations on all you've done to bring yourself to this place. And I hope the renovations are going well. We kind of need to do another project and I'm having trouble getting in the mood to live through the process ;)
All my best,
Sara
That's great news. As I'm sure you're aware, Joe has also reported that the Imuran helps with fatigue and pain. Your refractory symptoms must have felt like a "runaway train," and you must be so relieved you've found a way to stop it.
I'm so glad you're feeling good - congratulations on all you've done to bring yourself to this place. And I hope the renovations are going well. We kind of need to do another project and I'm having trouble getting in the mood to live through the process ;)
All my best,
Sara
Yes, Sara,
Joe's experience with and knowledge about Imuran helped me with my decision. I don't know what I would have done without this board. I have learned so much! The fatigue and pain improved dramatically when I was taking both the Imuran and the Entocort. I have not felt that good in the last 10 years. I know I was getting some systemic effects from the Entocort. I feel well now, but the steroid really did give me a little more energy. But, Imuran has a very good record and I am hopeful that I will continue to feel good.
The remodel is almost over and everything looks great. I love the new kitchen where I am learning to whip up my gluten free meals (and goodies).
Celie
Joe's experience with and knowledge about Imuran helped me with my decision. I don't know what I would have done without this board. I have learned so much! The fatigue and pain improved dramatically when I was taking both the Imuran and the Entocort. I have not felt that good in the last 10 years. I know I was getting some systemic effects from the Entocort. I feel well now, but the steroid really did give me a little more energy. But, Imuran has a very good record and I am hopeful that I will continue to feel good.
The remodel is almost over and everything looks great. I love the new kitchen where I am learning to whip up my gluten free meals (and goodies).
Celie
Celie,
It sounds as though it's working for you, so that's what counts. Hopefully, your energy level will improve/return, as more time passes.
I believe that you're the first member here, who has successfully treated MC, (only - IOW, with no additional diagnoses of any other IBD), with Imuran. Others who have tried it, (with MC only), have been unsuccessful.
Congratulations, and thanks for the update.
Tex
It sounds as though it's working for you, so that's what counts. Hopefully, your energy level will improve/return, as more time passes.
I believe that you're the first member here, who has successfully treated MC, (only - IOW, with no additional diagnoses of any other IBD), with Imuran. Others who have tried it, (with MC only), have been unsuccessful.
Congratulations, and 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.
Thank you, Tex,
I feel fortunate. I know Imuran is a somewhat controversial treatment option in your mind. My doc has used it successfully before and I am glad now that I tried it. Perhaps it is the right combination of medicine, diet and rest. But, whatever it is, I am happy to be feeling more well than I have in quite a while.
Without this board, I don't know what I would have done. I am grateful for the attitude of support you have created here as we all find our way toward some kind of new normal. We can't cure it, we just have to find a way forward.
I appreciate you, Tex.
Celie
I feel fortunate. I know Imuran is a somewhat controversial treatment option in your mind. My doc has used it successfully before and I am glad now that I tried it. Perhaps it is the right combination of medicine, diet and rest. But, whatever it is, I am happy to be feeling more well than I have in quite a while.
Without this board, I don't know what I would have done. I am grateful for the attitude of support you have created here as we all find our way toward some kind of new normal. We can't cure it, we just have to find a way forward.
I appreciate you, Tex.
Celie
Celie,
Thanks, I appreciate you, also. We're all here for the same purpose - to learn from each other, effective ways of dealing with this disease, that also suit our individual lifestyle. The more options we have, the better, so we'll never stop searching, and we'll never stop learning.
Tex
Thanks, I appreciate you, also. We're all here for the same purpose - to learn from each other, effective ways of dealing with this disease, that also suit our individual lifestyle. The more options we have, the better, so we'll never stop searching, and we'll never stop learning.
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.