Just thought I would update you on how things are going with me. As you all probably know I was diagnosed with MC almost a year ago. After 8 months of no help I found a good GI doctor who put me on Entocort. Initially it helped a lot, almost immediately. I also did the Enterolab testing and was found to be intolerant to gluten, soy, eggs, and dairy. I have been free of all but gluten since April and have been gluten free for over two months. I had weaned down to 3 mg of Entocort and was doing “just OK”. Found I cannot tolerate veggies or fruits. He gave me another prescription for Entocort, 6 mg a day and I take Questran as needed.
When I was at my last visit three weeks ago he said that if things were not better after getting off of the Entocort we could consider Imuran. Since my visit things have gone downhill. I don’t feel bad all the time, but consistantly worse than I did three weeks ago.
I decided to seriously consider Imuran and spoke to others on this site who are taking it. I did a lot of research on my own. Today I emailed my doctor and asked him if we would consider it before I get off the Entocort as it takes a few months to take effect. He has set up initial blood tests for me this week then we will take it from there. Not everyone is a good candidate, so therefore the blood tests and also for a baseline.
I have thought this through carefully. I am 67 years old. I have always been very active and this is the second summer that has gone by where I wasn’t able to ride my bicycle, kayak, and do other things I love to do. I don’t have time to try to figure out all the foods or wait for this to turn around. I’ve always been against taking drugs and spend lots of time at health food stores, but when I look at the whole picture and weigh everything out it comes down to the quality of life that I want for myself. Being miserable is not the way to go if there is anything that can help. I believe this drug is safer long term than Entocort. If I am approved to start this form of treatment my doctor will monitor my bloodwork closely and my general health. Both PP members that are on it now are enjoying a better quality of life than they did before Imuran. They both admit that it's not perfect, but better than it was before. I am also aware that I will still have to watch my diet.
Keep your fingers crossed that I will be a good condidate and will tolerate it without too many problems.
Nancy
Update and Imuran
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Nancy,
Glad to hear an update from you, but I'm sorry it's not as good as you'd like. This is truly a tough disease to deal with despite what most GI's think!!! It sounds like you've given your situation a lot of thoughtful consideration and are ready for the next step in your MC management. I'm sending lots of positive thoughts your way that this will produce good results for you
. Please keep us posted on how you do.
Love,
Kari
Glad to hear an update from you, but I'm sorry it's not as good as you'd like. This is truly a tough disease to deal with despite what most GI's think!!! It sounds like you've given your situation a lot of thoughtful consideration and are ready for the next step in your MC management. I'm sending lots of positive thoughts your way that this will produce good results for you
. Please keep us posted on how you do.Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Hi Nancy,
I could not get off Entocort and my GI doc suggested Imuran. After very careful consideration and a lot of study, I decided to try it. I have had very good results. I was able to stop Entocort completely and I feel very well. As some of the members of the board know, I tried diet alone, both SCD and then just removing gluten, dairy, and soy. I still could not go without Entocort. My doc was concerned about using Entocort for the long term. She said she believes that Imuran is the safer long term medication. Neither drug is without risk, but Imuran has a good long term history.
My doc suggested a relatively long transition plan. I started Imuran in January and started weaning off the Entocort in April. I weaned off the Entocort very slowly over a 6-8 week period. I have not had any problems since. My doc did say that she thinks that my diet plays a role in my success. She really thought I might have to take a small dose of Entocort with the Imuran, but that is not the case. I am convinced that I am much healthier without the gluten.
If you decide to try Imuran, I hope it works as well for you as it seems to for me.
Best of luck to you!
Celie
I could not get off Entocort and my GI doc suggested Imuran. After very careful consideration and a lot of study, I decided to try it. I have had very good results. I was able to stop Entocort completely and I feel very well. As some of the members of the board know, I tried diet alone, both SCD and then just removing gluten, dairy, and soy. I still could not go without Entocort. My doc was concerned about using Entocort for the long term. She said she believes that Imuran is the safer long term medication. Neither drug is without risk, but Imuran has a good long term history.
My doc suggested a relatively long transition plan. I started Imuran in January and started weaning off the Entocort in April. I weaned off the Entocort very slowly over a 6-8 week period. I have not had any problems since. My doc did say that she thinks that my diet plays a role in my success. She really thought I might have to take a small dose of Entocort with the Imuran, but that is not the case. I am convinced that I am much healthier without the gluten.
If you decide to try Imuran, I hope it works as well for you as it seems to for me.
Best of luck to you!
Celie
Nancy,
Best of luck with Imuran - I hope you're a candidate, and that it is as positive for you as others have reported. Celie's experience with a successful transition plan must be very encouraging, along with your other research.
Celie, glad to hear you've been able to transition from Entocort. I am still hopeful that I will be able to continue on my path via diet alone, but it is really good to know there are multiple options, as far as medication goes. One thing we know for sure - one size does *not* fit all here, and our needs may change over time.
Best of health, and Nancy, I know you'll keep us posted, and I'm hoping to hear good news,
Sara
Best of luck with Imuran - I hope you're a candidate, and that it is as positive for you as others have reported. Celie's experience with a successful transition plan must be very encouraging, along with your other research.
Celie, glad to hear you've been able to transition from Entocort. I am still hopeful that I will be able to continue on my path via diet alone, but it is really good to know there are multiple options, as far as medication goes. One thing we know for sure - one size does *not* fit all here, and our needs may change over time.
Best of health, and Nancy, I know you'll keep us posted, and I'm hoping to hear good news,
Sara
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Gabes-Apg
- Emperor Penguin
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- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Nancy
thanks for the update, how did you go with coming up with some variety for breakfast?
Fingers and toes crossed that the blood tests are AOK and you can start
I wrote a post ages about about the matrix of MC and the elements that are part of the consideration as to what each of us do treatment wise
7 years ago i didnt even have a regular doctor, i took supplements and saw my acupuncturist if i felt poorly. I went to a womens clinic for womens stuff and a travel doctor when i had to travel for work.
Now i am on a first name basis with all the staff at the pharmacy!
there is no right way or wrong way.... we do what works best for each of us!
take care
PS - make sure you clean your teeth after having questran, it is a bit evil on your teeth
thanks for the update, how did you go with coming up with some variety for breakfast?
Fingers and toes crossed that the blood tests are AOK and you can start
I wrote a post ages about about the matrix of MC and the elements that are part of the consideration as to what each of us do treatment wise
7 years ago i didnt even have a regular doctor, i took supplements and saw my acupuncturist if i felt poorly. I went to a womens clinic for womens stuff and a travel doctor when i had to travel for work.
Now i am on a first name basis with all the staff at the pharmacy!
there is no right way or wrong way.... we do what works best for each of us!
take care
PS - make sure you clean your teeth after having questran, it is a bit evil on your teeth
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Hi Nancy that's great news that you are working with Dr Nagri about starting Imuran. The blood teats are pretty basic and look at your liver functionality to insure that there are no underlying issues.
As Celie had mentioned and I also experienced, it does take several months to see the full benefit. With that said I noticed benefits in the reduction of joint pains within just a few weeks. One of the great and welcome surprises with the Imuran was the significant reduction in both aches and pains in my joints and a reduction in brain fog.
After about 4 months the real control of MC was noticed with daily 'Normans' and I found that if I stayed with the diet I was pretty much back to my old self. I also noticed that if i accidentally had gluten that my reaction was quite minimal as compared to without the Imuran
When I had to stop the Imuran while I was in the hospital, I really noticed how well it was working and was glad when I started taking it again.
I'm very impressed in how well you have methodically worked on your diet coupling that with the Enterolab test results to fnd a diet that works well for you.
Thanks for sharing your progress and this update on your choice of treatment, I hope this works well for you.
Take care
Joe
As Celie had mentioned and I also experienced, it does take several months to see the full benefit. With that said I noticed benefits in the reduction of joint pains within just a few weeks. One of the great and welcome surprises with the Imuran was the significant reduction in both aches and pains in my joints and a reduction in brain fog.
After about 4 months the real control of MC was noticed with daily 'Normans' and I found that if I stayed with the diet I was pretty much back to my old self. I also noticed that if i accidentally had gluten that my reaction was quite minimal as compared to without the Imuran
When I had to stop the Imuran while I was in the hospital, I really noticed how well it was working and was glad when I started taking it again.
I'm very impressed in how well you have methodically worked on your diet coupling that with the Enterolab test results to fnd a diet that works well for you.
Thanks for sharing your progress and this update on your choice of treatment, I hope this works well for you.
Take care
Joe
Joe
I'll be looking forward to your updates.Thank you all for your continuing support. I did feel like sort of a failure because I couldn't seem to get a hold on it with diet alone. That is the way I wanted to go. Not everything works out the way we want it too. Like you Gabes, I went to the doctor for my annual check and that was it. I have never been on a prescription drug until last year except for antibiotics periodically. For breakfast, I pretty much only have pancakes, GF rice chex cereal with almond milk. I can't tolerate fruits and veggies so it makes it hard. I do hope I can have some of those in a few months. Oh, and I do brush immediately after taking Questran.
Celie & Joe, you have both paved a way for a new way of treating this disease. Hopefully, it will catch on for those of us who can't control this with diet alone. No one wants to take meds, but if the alternative is not living your life to the fullest, being afraid to leave home, then I say be willing to try something new. Hopefully, it will work and I can tolerate the medication without too much of a problem.
Nancy
Celie & Joe, you have both paved a way for a new way of treating this disease. Hopefully, it will catch on for those of us who can't control this with diet alone. No one wants to take meds, but if the alternative is not living your life to the fullest, being afraid to leave home, then I say be willing to try something new. Hopefully, it will work and I can tolerate the medication without too much of a problem.
Nancy
Hi Nancy,
You've received plenty of support for your decision, but I thought I'd better post on this thread, so that you didn't think that I was opposed to your plan.
Of course, I'm always a bit disappointed, and I tend to think that maybe it's partially my fault, because I wasn't helpful enough, anytime someone chooses a drug while there are still some diet options remaining to be tried, but I hear you - life's too short to spend it in the bathroom, when there are so many other much-more-desirable pastimes, that we could be enjoying. I'm in no position to cast stones, anyway, since I take a bunch of drugs myself, (not for MC, but for stroke-prevention), so I certainly understand that we sometimes have to lower our sights, and do what we were trying to avoid, in order to get on with life.
So along with everyone else, I hope that this treatment plan works for you, so that you can begin enjoying all those outdoor activities again, without worrying about things that no one should have to worry about.
Tex
You've received plenty of support for your decision, but I thought I'd better post on this thread, so that you didn't think that I was opposed to your plan.
Of course, I'm always a bit disappointed, and I tend to think that maybe it's partially my fault, because I wasn't helpful enough, anytime someone chooses a drug while there are still some diet options remaining to be tried, but I hear you - life's too short to spend it in the bathroom, when there are so many other much-more-desirable pastimes, that we could be enjoying. I'm in no position to cast stones, anyway, since I take a bunch of drugs myself, (not for MC, but for stroke-prevention), so I certainly understand that we sometimes have to lower our sights, and do what we were trying to avoid, in order to get on with life.
So along with everyone else, I hope that this treatment plan works for you, so that you can begin enjoying all those outdoor activities again, without worrying about things that no one should have to worry about.
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 so much Tex, you are always very helpful and your knowledge is to be envied. It means a lot to have your support. Who knows, taking Imuran may not be forever either. I'm still hoping to heal more. I will continue to be careful about what I eat, but I'm hoping I may be able to add some fruits and veggies to my diet. I sure do miss them. GF is forever.
I will keep you all posted.
Nancy
I will keep you all posted.
Nancy
Hi Nancy,
I'm starting to wonder if there's something about being intolerant to fruit (and now, vegetables) that makes remission from MC much more complicated. Those intolerances certainly make one's diet extremely difficult and lacking in vital nutrients.
What is the common denominator? I don't think it's genes because Pat, who's also fructose intolerant, and I have different genes. Polly and I have identical genes, but she is able to eat fruits and vegetables. I was surprised to find that vegetables have fructose and I'm wondering if the common thread is fructose intolerance.
We each have to make decisions on our treatment based upon many factors - our family/spouse, the limitations of our diet, our weight loss, and the likelihood of improvement on the program we're following. I decided to resume taking Entocort because it has worked well for me with no side effects. I hope that Imuran brings you some relief, more food choices, and weight gain without any problematic side effects.
Please keep us posted. There are members here who will be interested in your course of treatment.
Gloria
My heart goes out to you because I know how you're feeling. It's been especially hard this summer to once again forgo eating fruits and vegetables from my garden.Nancy wrote:I'm hoping I may be able to add some fruits and veggies to my diet. I sure do miss them.
I'm starting to wonder if there's something about being intolerant to fruit (and now, vegetables) that makes remission from MC much more complicated. Those intolerances certainly make one's diet extremely difficult and lacking in vital nutrients.
What is the common denominator? I don't think it's genes because Pat, who's also fructose intolerant, and I have different genes. Polly and I have identical genes, but she is able to eat fruits and vegetables. I was surprised to find that vegetables have fructose and I'm wondering if the common thread is fructose intolerance.
We each have to make decisions on our treatment based upon many factors - our family/spouse, the limitations of our diet, our weight loss, and the likelihood of improvement on the program we're following. I decided to resume taking Entocort because it has worked well for me with no side effects. I hope that Imuran brings you some relief, more food choices, and weight gain without any problematic side effects.
Please keep us posted. There are members here who will be interested in your course of treatment.
Gloria
You never know what you can do until you have to do it.
Gloria,
I think you're so very right - there are many factors in our choices, and they are not fixed, but may change over time. I am mindful that I may 'lose' foods I appear to be tolerating; I know that my positive experience with Pepto may not mean it will work for me in all circumstances; when our choices are working well for us, we are fortunate as well as clever. We have one another to assist with 'upping the odds' - so we are lucky in this way as well.
I do think we're learning that genes are an important factor, but not predictive in terms of what specific intolerances we may have, nor of what particular treatment path will work for us. I do feel as though we might get some benefit from revisiting the question though - and hopefully help someone down the road, and/or light the path for our family members.
I have such confidence in the integrity and discipline of your thinking - I hope you're already enjoying a little weight gain and some increased food tolerance. And I do firmly believe your experience and meticulous observation will benefit others (but I hope it benefits you first and most, for now).
Love,
Sara
I think you're so very right - there are many factors in our choices, and they are not fixed, but may change over time. I am mindful that I may 'lose' foods I appear to be tolerating; I know that my positive experience with Pepto may not mean it will work for me in all circumstances; when our choices are working well for us, we are fortunate as well as clever. We have one another to assist with 'upping the odds' - so we are lucky in this way as well.
I do think we're learning that genes are an important factor, but not predictive in terms of what specific intolerances we may have, nor of what particular treatment path will work for us. I do feel as though we might get some benefit from revisiting the question though - and hopefully help someone down the road, and/or light the path for our family members.
I have such confidence in the integrity and discipline of your thinking - I hope you're already enjoying a little weight gain and some increased food tolerance. And I do firmly believe your experience and meticulous observation will benefit others (but I hope it benefits you first and most, for now).
Love,
Sara
Gloria,
Thanks for the support. I don't blame you for taking Entocort. When I was on 9 mg life was quite normal with normans every day. I was OK for a while even weaning down. This time 6 mg is just not doing it for me. It's the everyday not know which way I'm going to go and not being able to plan anything. We have a pretty active group of people we hang out with and I really noticed within the last few weeks that I am not able to participate in a lot of things everyone is doing. I cannot plan anything in the morning and of course that is when they take off. Yesterday morning I was fine, norman visited. Today is a different story, and I've already made a few trips to the bathroom. I just feel like time is passing me by and also lots of fun I am missing. I feel bad for my DH, he is so good, but he is also giving up a lot for me.
I am hoping this works for me as well as it is working for Joe and Celie. Time will tell.
Nancy
Thanks for the support. I don't blame you for taking Entocort. When I was on 9 mg life was quite normal with normans every day. I was OK for a while even weaning down. This time 6 mg is just not doing it for me. It's the everyday not know which way I'm going to go and not being able to plan anything. We have a pretty active group of people we hang out with and I really noticed within the last few weeks that I am not able to participate in a lot of things everyone is doing. I cannot plan anything in the morning and of course that is when they take off. Yesterday morning I was fine, norman visited. Today is a different story, and I've already made a few trips to the bathroom. I just feel like time is passing me by and also lots of fun I am missing. I feel bad for my DH, he is so good, but he is also giving up a lot for me.
I am hoping this works for me as well as it is working for Joe and Celie. Time will tell.
Nancy
Nancy, I think you have thought your decision through very well. I have been on various diets trying to get to remission and nothing has worked. I am also back to taking 6mg of Entocort (the max of what I can take) and 1 Imodium a day with no real results. This has been going on for 2 years!
Gloria and I have corresponded on how difficult it seems to find the "answer". I can tolerate veggies better but very little fruit and very little meat; hence major weight loss. It also appears, that every time I give up a food, I am not able to ever get it back. I have just moved to the Paleo diet and am adding 1T of different oils to all my meals just for calories.
I am 64 and have pretty much come to the same conclusion, that what is left in life should be enjoyed!! In two years I have eliminated a lot of foods, loss 20% of my weight, taken drugs pretty much non-stop, and still have on-going bowel problems. I just need to find the right drug!
Wishing you success and happiness! Love, G
Gloria and I have corresponded on how difficult it seems to find the "answer". I can tolerate veggies better but very little fruit and very little meat; hence major weight loss. It also appears, that every time I give up a food, I am not able to ever get it back. I have just moved to the Paleo diet and am adding 1T of different oils to all my meals just for calories.
I am 64 and have pretty much come to the same conclusion, that what is left in life should be enjoyed!! In two years I have eliminated a lot of foods, loss 20% of my weight, taken drugs pretty much non-stop, and still have on-going bowel problems. I just need to find the right drug!
Wishing you success and happiness! Love, G
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
Just wanted to update you all on my experience with Imuran. I have now been on it for 5 1/2 months. After being on Imuran for a couple of months I slowly weaned off of the Entocort eliminating 3 mg per week. I was on 3 mg per day. I just had my blood work done and everything is fine. Between that and the N.A.E.T. treatments I have been able to eat a few more foods. I have slowly added salads, more veggies and fruits. If I have a tiny bit of dairy in something it doesn't bother me, but I pretty much stay away from it. My goal was to be able to tolerate small amounts here and there and in restaurants. For the most part I am remaining GF, DF, and SF with eggs as ingredients and once in a while a scrambled egg. I have not had gluten at all for seven months. I use almond milk for everthing, that is my favorite.
Now that I have completed my N.A.E.T. treatment, at least as far as I want to go for now, I still go back every few weeks for maintenance. I think acupuncture has been been a great addition to treating MC.
Norman visits every day and I have started to gain some weight back. I work out at the gym and am walking almost every day. Today I weigh 105 lbs up from 102. I make all my own foods and hardly ever buy anything GF that is processed except for some crackers. After having missed riding my bike and kayaking for two summers I am hoping that this will allow me to get back to doing that. Right now I feel pretty much like I did before MC. I certainly hope it lasts. IMHO, I think both Entocort and Imuran has given me back my life.
I want to thank all of you for your support and especially Joe and Celie who walked me through this.
Now that I have completed my N.A.E.T. treatment, at least as far as I want to go for now, I still go back every few weeks for maintenance. I think acupuncture has been been a great addition to treating MC.
Norman visits every day and I have started to gain some weight back. I work out at the gym and am walking almost every day. Today I weigh 105 lbs up from 102. I make all my own foods and hardly ever buy anything GF that is processed except for some crackers. After having missed riding my bike and kayaking for two summers I am hoping that this will allow me to get back to doing that. Right now I feel pretty much like I did before MC. I certainly hope it lasts. IMHO, I think both Entocort and Imuran has given me back my life.
I want to thank all of you for your support and especially Joe and Celie who walked me through this.