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Hi,
Has anyone had experience with Imuran? I have seen a new GI doc. He has put me on Pentasa and wants me to start Imuran. I am tapering off Entocort as he feels I am having too many side effects.
He also thinks I have more than one autoimmune disease.
I am not sure what to do at this point. I am on week 12 of my diet so I think it's too soon to stop all medication. Thanks,
Connie
Imuran?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Connie,
WOW! Imuran is a BIG gun! Far more dangerous than Entocort, IMHO. I would avoid it if at all possible, if it were me. Of course, I don't know how miserable you are with the MC or why your doc thinks you may be having another A.I disease. I'd like to hear more, but perhaps I have missed it, since I have been away from the Board for a while. Refer to me the appropriate posts, if that is the case. Week 12 is far too soon to see results from diet, in most cases, as you know.
Just my 2 cents worth!
Love,
Polly
WOW! Imuran is a BIG gun! Far more dangerous than Entocort, IMHO. I would avoid it if at all possible, if it were me. Of course, I don't know how miserable you are with the MC or why your doc thinks you may be having another A.I disease. I'd like to hear more, but perhaps I have missed it, since I have been away from the Board for a while. Refer to me the appropriate posts, if that is the case. Week 12 is far too soon to see results from diet, in most cases, as you know.
Just my 2 cents worth!
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Connie
I agree with everything that Polly said, and since she's an MD, her opinion is definitely worth a heck of a lot more than 2 cents, obviously. Like Polly, I'm wondering what other autoimmune issues your doctor thinks you have. Whatever they might be, based on the accumulated experiences of the members here, there is a very good chance that those other autoimmune issues may fade away, once the diet has had time to become effective. Many of us have found that to be the case.
I believe that at least 2 or 3 members here have tried Imuran, but to the best of my knowledge, no one has been able to attain remission by using it. Imuran is a powerful immune system suppressant, (it was developed to prevent the body from rejecting transplanted organs). One member is now IgA deficient, after using Imuran, and while there is no proof, I am highly suspicious that the Imuran was the cause of that problem.
If I were in your shoes, and the Entocort was causing serious side effects, I believe that I would try the Pentasa, and stick with the diet.
Whatever you decide to do, good luck with your treatment.
Tex
I agree with everything that Polly said, and since she's an MD, her opinion is definitely worth a heck of a lot more than 2 cents, obviously. Like Polly, I'm wondering what other autoimmune issues your doctor thinks you have. Whatever they might be, based on the accumulated experiences of the members here, there is a very good chance that those other autoimmune issues may fade away, once the diet has had time to become effective. Many of us have found that to be the case.
I believe that at least 2 or 3 members here have tried Imuran, but to the best of my knowledge, no one has been able to attain remission by using it. Imuran is a powerful immune system suppressant, (it was developed to prevent the body from rejecting transplanted organs). One member is now IgA deficient, after using Imuran, and while there is no proof, I am highly suspicious that the Imuran was the cause of that problem.
If I were in your shoes, and the Entocort was causing serious side effects, I believe that I would try the Pentasa, and stick with the diet.
Whatever you decide to do, good luck with your treatment.
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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barbaranoela
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Connie-----I had big neurological issues with Entocort---such as slurred speech and walking---sorta needed the wall to help me walk a straight line--
Took this for 2 dayz--called neuro and it was *stop immediately*
Never had the use of Pentasa nor Imuran---so cant give U a comparison--
Hope what ever U choose works for U in a good way~~~
As we said so often---what works for one might not work for the other~~~~ tis trial and error--
Barbara
Took this for 2 dayz--called neuro and it was *stop immediately*
Never had the use of Pentasa nor Imuran---so cant give U a comparison--
Hope what ever U choose works for U in a good way~~~
As we said so often---what works for one might not work for the other~~~~ tis trial and error--
Barbara
the fruit of the spirit is love, joy, peace, patience, kindness, goodness, faithfulness and self-control
Polly, Tex and Barbara, Thanks for your advice and support.
I have been wondering whether to start the Imuran or not. Polly's post helped me see that my hesitation was justified.
Knowing that other members have used Imuran and not gained remission also helps immensely. (GI doc said that I could very likely gain remission with it. )
My major MC symptoms have been swelling, pain, nausea and spasms. The Entocort has controlled the D but none of the other symptoms. I have lost weight as I just haven't felt much like putting on a big feed bag. Doc says there is no excuse for the weight loss and get back on a more regular diet. He said I should eat everything. (Not following that advice)
I have a very dry mouth and dry eyes. GI doc looked at my tongue and seemed to think there was something significant there. He said his MC patients usually present with multiple autoimmune diseases. I had read previously that other symptoms can resolve when MC is in remission and I had thought about that. Thanks for bringing it up again Tex.
I have been feeling better during this past week. I will try the Pentasa and see what happens as I taper the Entocort.
Thanks again. I trust and value your input.
Haven't posted my roller coaster ride as I have thought several times that I am flunking MC and I want to be positive!!!!!
Connie
I have been wondering whether to start the Imuran or not. Polly's post helped me see that my hesitation was justified.
Knowing that other members have used Imuran and not gained remission also helps immensely. (GI doc said that I could very likely gain remission with it. )
My major MC symptoms have been swelling, pain, nausea and spasms. The Entocort has controlled the D but none of the other symptoms. I have lost weight as I just haven't felt much like putting on a big feed bag. Doc says there is no excuse for the weight loss and get back on a more regular diet. He said I should eat everything. (Not following that advice)
I have a very dry mouth and dry eyes. GI doc looked at my tongue and seemed to think there was something significant there. He said his MC patients usually present with multiple autoimmune diseases. I had read previously that other symptoms can resolve when MC is in remission and I had thought about that. Thanks for bringing it up again Tex.
I have been feeling better during this past week. I will try the Pentasa and see what happens as I taper the Entocort.
Thanks again. I trust and value your input.
Haven't posted my roller coaster ride as I have thought several times that I am flunking MC and I want to be positive!!!!!
Connie
Dear Connie,
I was sorry to hear that you felt like a flunking MCer. All of us have had ups and downs on the journey of this disease. When we are down is when we need each other the most. For me, those were also the times that I wanted to pull back. Please know we are all here for whatever support you need.
Jan
I was sorry to hear that you felt like a flunking MCer. All of us have had ups and downs on the journey of this disease. When we are down is when we need each other the most. For me, those were also the times that I wanted to pull back. Please know we are all here for whatever support you need.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Jan,
Thanks for the kind words. I can't imagine going through this without the folks on this website. I haven't found a doctor in this area that seems to know much about MC.
There has been a positive side to MC. I am grateful that I was well for so many years unlike others who become ill at a young age. I have also learned to stop and smell the roses.
Joan, I cut out soy with dairy and gluten. Thanks for thinking of me.
I am feeling better these past few days and I am so thankful for this website.
Wishing you all a very Merry Christmas.
Connie
Thanks for the kind words. I can't imagine going through this without the folks on this website. I haven't found a doctor in this area that seems to know much about MC.
There has been a positive side to MC. I am grateful that I was well for so many years unlike others who become ill at a young age. I have also learned to stop and smell the roses.
Joan, I cut out soy with dairy and gluten. Thanks for thinking of me.
I am feeling better these past few days and I am so thankful for this website.
Wishing you all a very Merry Christmas.
Connie
Connie,
I took Imuran for several months along with Entocort and diet and got some relief. Nowhere near normal. I stopped the Entocort and then it was bad again. So I stopped the Imuran too. Being on Imuran requires a lot of blood tests. They have to constantly monitor certain levels and I've forgotten what they are. You start with a small amount and build up to your threshold amount. Very complicated and expensive. I am doing better now just eliminating fiber which means most fruits and vegetables. I hate that but it helps and no meds. I take a lot of vitamins and minerals to compensate. I also am getting Gamma globulin shots because a new doctor found I was IgA deficient. I don't know if that is helping or not.
Pat
I took Imuran for several months along with Entocort and diet and got some relief. Nowhere near normal. I stopped the Entocort and then it was bad again. So I stopped the Imuran too. Being on Imuran requires a lot of blood tests. They have to constantly monitor certain levels and I've forgotten what they are. You start with a small amount and build up to your threshold amount. Very complicated and expensive. I am doing better now just eliminating fiber which means most fruits and vegetables. I hate that but it helps and no meds. I take a lot of vitamins and minerals to compensate. I also am getting Gamma globulin shots because a new doctor found I was IgA deficient. I don't know if that is helping or not.
Pat