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Jan Dollar posted:

I am doing great with Imuran, including liver functions, and I even have fatty liver disease. Actually, I was on a variety of biologics for my arthritis until pouchitis became chronic. My GI suggested the combo of Imuran and Remicade as the one with the most data for pouchitis treatment. Of note, Imuran used with Remicade is a lower dose than when used alone. It helps prevent antibody formation against the Remicade.

Jan

Hi Jan, I have been on Remicade with Imuran for 14 months and my Gİ says it's time to stop Imuran now. Just as you, I started Imuran along with Remicade to prevent antibody formation. My Imuran dose is 2 x 2 a day (50 mg each). I am a bit concerned about going off of Imuran because I have been doing great lately. Humira never worked for me. And  I don't want my Remicade treatment fail.

I suggested tapering off Imuran gradually but my GI thinks otherwise. He wants to end the treatment all at once at the end of this month and go on with Remicade only.

BTW, my blood work has always been good throughout the treatment, no side effects from Imuran or Remicade. And I also have hepatomegalia and fatty liver ( grade I-II).

I wonder why he is so determined to end the Imuran treatment, and why not to stop it gradually. any ideas? Thanks.

 

 

Thank you CT and Jan. I like the idea of an MR Enterography. Wonder why it’s not been considered, but I’ll surely ask. 

CT, you mentioned you eat yogurt. What type? Do you take VSL and how much?

I’ve switched to all goats milk for dairy, and goats milk kefir. VSL made me miserable and I felt I was wasting money between that and the lack of definitive guidance on how much to take. I now understand it takes time to adjust to the probiotic and went thru that misery with another brand I’m happy with. But the scope will be more telling so I’m not ruling out VSL.

I felt like VSL III was a waste of money as well.  I was tried on it a few times, cold turkey off antibiotics, and it was a dramatic fail.

I eat all kinds of yogurts, but I like the Yoplait lowfat probiotics yogurts, Noosa, and Chobani.  I eat a yogurt for breakfast and another one as an afternoon snack but with the snack yogurts I stick to 100 calorie or less with low sugar and fat.

As far as the MRI Enterography, it's much better for diagnostic purposes than the Prometheus test because it also isolates the location of the inflammation especially up the pipeline so to speak. It's an almost 3 hour test and I posted  a thread about mine here:

https://www.j-pouch.org/topic/m...study-of-small-bowel

I posted that thread over 5 years ago and I am glad I did because I don't remember the details so well and that thread served as a journal of my experiences with the MRE.  Right when that test was done I was at my worst point in the 25 years of managing the pouch issues and things have been much better since then with vastly improved diet and Remicade starting in 2015.

Last edited by CTBarrister

Linguist, it appears that the jury is still out regarding whether combination therapy with a biologic and immunosuppressant should continue long term. There is a concern regarding lymphoma with long term therapy with azathiopurine. But, the key is if you are in full remission before considering stopping one or another treatment. The immunosuppressant makes it possible to sustain lower doses of Remicade over time, by suppressing anti-Remicade antibodies.

I was able to find this article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5479343/

Your azathioprine dose is higher than mine. I only take 50mg daily, and have since the beginning of my treatment. Perhaps because I am also on treatment for my arthritis in addition to IBD, there has been no discussion of stopping any treatment. It has been 18 months for my combination therapy.

Jan

 

Two months into this journey and they don’t know what to make of my mixed results. Really annoyed at the communication confusion. Now I’m told the cobblestoning appeared in the small bowel series last year, but not this year. If all the flip flops are straight, this year it’s inflammation and ulcer in pouch only. But, once again I see the doctor in two weeks. 

For now it’ll be treated as chronic pouchitis, but also scheduling an MR Enterography.

And at two months of testing I’m just now being prescribed antibiotics. All I know for now is Cipro and flagyl, likely at least a month. I’ve never taken them more than two weeks, and never together. Really hoping I’m not knocked on my butt with nausea. Last time I told the doctor I had this symptom she said that doesn’t happen. I’ve since learned otherwise. Next time I mentioned it to another doc in the practice and he said he could prescribe something if I had nausea, but I didn’t need it. 

The care plan is coming along but really annoyed about communication, having a doctor who multiple times is making me feel things are in my head, disregards things I say and treatment possibilities. Just been down that road a few too many times in 3 decades and not tolerant of that crap. 

Grateful, but tired and annoyed.

Yes, thanks Scott. Even the Rx literature says the same. Such a basic thing.

Doctors don’t like the internet for educating ourselves and this doctor said talk to the experts in her office rather than what I read on the internet .....as though I wasn’t going to talk to them. It’s about advocating for ourselves and I’m frankly annoyed today that much hasn’t changed in decades.

I was told they haven’t seen Promethius results that indicate pattern inconsistent with IBD when there’s a clear history. Then there’s the lab that didn’t even run the test until I called directly myself and learned they had a system glitch.

Finally, I was initially told yesterday by the PA that an MR Enterography was not warranted since the small bowel series was clear. Today I get a call that the doctor wants it done. I’m quite certain it never would’ve come up had I not learned about the test on this board.

Heck, I had multiple doctors send me away with no answers for 13 years until I discovered the word pouvhitis on this board.

This seems basic stuff that specialists should be on top of without the patient internet education they are quick to shut down. 

/rant 

Well they didn’t see my Prometheus test which said pattern inconsistent with IBD despite that I have had IBD for 45 years documented on scopes. Like I said it’s a nonsense test and inconclusive. My GI has two pathologists on west and east coast, both of very high expert pedigree, look at the results and they couldn’t draw any conclusions.

The MRE isn’t necessarily going to give you closure on a diagnosis and as I mentioned I don’t think “proper” or correct diagnosis is or should be driving your treatment. The MRE will provide information on the location and extent of the inflammation upstream. These tests should be viewed as guides for treatment and markers for your response to treatment. Any Doctor who wants to see a Prometheus result before determining a course of treatment for his or her patient is not someone I would be a patient of for very long.

I have taken antibiotics for 22 years continuously and always take with food and was never nauseated by any.

Regardless of everything else I think you should go to a different GI specialist going forward. Find someone experienced with treating Pouch inflammation and related issues.

Good luck. If you improve with antibiotics you can stay on them but will need to rotate as previously discussed.

Last edited by CTBarrister

The story continues, as these things go. I continue to feel better. MRE on Monday. 

Just a tidbit to share that I received from Prometheus:


The sensitivity of our IBD panel is 72% which is posted at the bottom of the report. This indicates that we are unable to detect IBD in ~28% of IBD positive patients. The UC marker ANCA antibody is produced in the large bowel, so with resection, this reduces our ability to detect IBD / UC.

The positive outcome of a negative IBD result, is that the initial diagnosis is more likely.

Last edited by BlueFlame

The Prometheus results should be ignored, totally. IMHO this test is just a money grab by pathologists much like propofol was a few years back by anesthesiologists. Then when everyone started doing it became a craze until patients objected because it is 15 times the cost of conscious sedation which they do not tell you upfront when giving you a choice. As far as Prometheus they give something to the Docs like kickbacks for pushing these tests even though responsible and ethical doctors know they don’t really mean anything. Someone is making money it but it’s not you!

I had an intelligent and honest debate with my GI about the merits of using propofol to sedate scope patients. In the end  he gave in to me because logic compelled him to do so. They mainly do it for reasons of making money for anesthesiologists and moving patients in and out of recovery rooms as quickly possible. Not because it’s actually better. MONEY GRAB for the specialist and the facility as they can scope more people and make more money. All of us should be calling a spade a spade. They will NEVER put propofol in my body.

BF, hit the ignore button on Prometheus results and move on to the MRE which will actually provide some reasonably conclusive scientific evidence. Good luck and review my thread on same. It’s not a horrible test, just long.

Last edited by CTBarrister

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