Update - 1 Month of Imuran

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Pat
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Post by Pat »

Joe,

I guess my dr. put me on a very low dose at the beginning and I had a blood test every 8 weeks if I remember correctly until I reached the therapeutic dose. They could tell by my blood test when I reached the therapeutic dose. They increased the amount until I reached the Therapeutic dose. I had several blood tests and ran about $250+ if I remember correctly. I am so happy for you that in such a short time you have reached normalcy.

My dr. felt that Imuran had been around for 40 years or so and had been tried and tested unlike Entocort. He felt that Entocort was so new and that many times the new drugs turn out to be not so go good after awhile. He just felt that Entocort should be used temporarily and the Imuran was something that could be used long term. Unfortunately Imuran didn't work for me and the Entocort only sort of worked. Fortunately diet is helping me the most now that the effects of antibiotics have worn off.

Pat
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Joefnh
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Post by Joefnh »

Hi pat my doctor did the same by stepping up my dose 25mg per week until I reached a therapeutic dose of 150mg. To a degree I agree with your doc Imuran has been around for 40+ years and does have a good safety record if monitored. But it is a 'big gun' in that it is a direct immune suppressant drug.

Of course around 2001 I think there was some issues with doctors mis-prescribing Entocort and there was quite a few issues. I believe Entocort was pulled from the market for a while until that was sorted out. So his concern at that time was probably well founded.

Imuran is preferred over long term steroid use in most cases.

I also should say that I have found that the diet is at least if not more important than the medications. I also am pursuing acupuncture twice a week as part of treatment plan.

--Joe
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Post by Ginny »

Great news Joe! :bigbighug: I will be praying for your continued success! Ginny
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
Celie
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Post by Celie »

Thanks for the update Joe,
I am following your progress with great interest since my doc plans to transition me from Entocort to Imuran starting about the first of the year. I am glad it is going well. You are making me more comfortable with the whole idea. I a going to try to wean off just using diet, but if that does not work, Imuran it is...

Celie
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Joefnh
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Post by Joefnh »

Hi Ginny, thanks for the Hug and the prayers, much appreciated.

Celie I hope the diet can work by itself, that would be the best solution. I was wondering have you only tried the Entocort, or have you tried other meds as well? The reason I ask is that while the Imuran is a pretty safe med and fairly inexpensive, it is a direct immune suppression med. I would think that this would be one of the last meds to try after others have failed.

If you do try this out, be sure to take this with food, I find it works best to take it at the end of a meal. Early on for me the first few days, it did cause some minor feelings of nausea that went away pretty quickly. For those times I did chew some candied ginger root, the same stuff they serve with sushi - that works great. Overall besides the few days of an occasional upset stomach there have been no side effects.

Best wishes Celie on your path to getting well

--Joe
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mbeezie
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Post by mbeezie »

Joe,

Glad to hear you are improving. I had been thinking about you because I remembered you were to see a dietitian last week - hopefully she had something to offer. I haven't been on the forum much and am a bit overwhelmed by the number of new posts.

Hope things continue to improve for you.

Mary Beth
"If you believe it will work out, you'll see opportunities. If you believe it won't you will see obstacles." - Dr. Wayne Dyer
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Joefnh
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Post by Joefnh »

Hi Mary Beth, I had to re-schedule my appt for next week due to work being crazy. Thanks for checking in. My appt is next Thursday and I am looking forward to reviewing my diet and the issues related to low vitamin D & A.

Thanks for asking

--Joe
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Celie
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Post by Celie »

Hi Joe,
We have tried everything except one of the 5-ASA medicines. We plan to try that, but my GI doc doesn't think it is going to work. We have tried everything else and without Entocort I keep winding up at the ER. I am willing to try again after this semester is over. I think her plan is to try the 5-ASA medicine and if that does not work go back on Entocort since it works so fast for me and then transition to Imuran. I have not tried diet before, so my plan is to try the diet route and hope that when we wean of Entocort the first time to try the 5-ASA drug I won't need it. I started the SCD diet last week. It is grain free, refined sugar free and I am doing it dairy free. I am hoping...

But, I am watching your transition and am glad it seems to be working for you. One of the docs I gave up on thought I might have RA. That is a possibility that I am going to have to pursue when I get enough emotional energy to try another rheumatologist (I have not had good luck on that front). Imuran is apparently a good drug for that, so it may be what I must do.

This forum is a great place to learn.

Celie
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tex
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Post by tex »

Celie,

MC causes arthritis symptoms very similar to RA for some of us. Before I started the diet, some of my finger joints were extremely inflamed, and those fingers were growing crooked. My knees were so bad that I had to use a cane to get around. It took a while for the diet to start working, but eventually all those arthritis symptoms went away, and they have never returned. Several other members have reported similar experiences. IOW, untreated gluten-sensitivity can cause arthritis, and various other autoimmune issues.

I believe you will be very pleased with the results, if you stick with the diet long enough to allow your intestines to heal. Please keep us updated on your progress.

Tex
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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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Joefnh
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Post by Joefnh »

Celie, it sounds like you have been through a lot already. If RA is confirmed then Imuran is one of the common treatments for that. Certainly diet should be the first line of treatment for MC, I am not up to date on the details of the SCD diet, but it sounds like it covers some of the basics. For me the diet is certainly is as at least important as the meds. From my experience, and it sounds like several others, the diet can take a while to take effect

As far as Imuran it does seem to be quite a bit more potent than the Entocort and has quickly resolved several symptoms that I was dealing with in conjunction to MC & Crohns, namely significant joint and muscle pain. For me while keeping the D in check is key, I have also thoroughly enjoyed not being in pain anymore. For the first time in about 10 years I can stand up for more than 5 minutes and not hurt.

Celie certainly keep us up to date on your journey.

--Joe
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hoosier1
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Post by hoosier1 »

Joe,

Chrons and CC? You deserve feeling well! I am glad for you.

Regards,

Rich
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Joefnh
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Post by Joefnh »

Yeah Rich, I got the sampler pack LOL. I figured I would try both out.

Thanks

--Joe
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Celie
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Post by Celie »

Tex,
I hope the diet will solve all. I am in it for the long haul. It is interesting to think that food sensitivity could be the cause of the other symptoms I have. I have thought of LC as a new part of my autoimmune trifecta. I think of fever and fatigue as "THING 1", pain as "THING 2", and LC as "THING 3." Perhaps they are all THING 3.

Joe, sorry to butt in on your thread.

Celie
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Joefnh
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Post by Joefnh »

Celie you are most certainly not butting in at all, this is 'everyones' thread. I thinks its great that we all can contribute. Thanks for adding the details of your journey. I did not fully appreciate the contribution of MC to the secondary symptoms.

Tex what you have mentioned regarding joint damage form MC is incredible.

--Joe
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Joefnh
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Post by Joefnh »

Celie you are most certainly not butting in at all, this is 'everyones' thread. I thinks its great that we all can contribute. Thanks for adding the details of your journey. I did not fully appreciate the contribution of MC to the secondary symptoms.

Tex what you have mentioned regarding joint damage from MC is incredible.

--Joe
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