GI wants to move me to Imuran + Prednisone

I went to the ER last week because I felt stinging pain in my rectum, believing it was related to recent abscess surgery. They did a CT scan and only found inflammation throughout my lower intestine, which is consistent with an MRI and flex-sig from about a month ago, ordered by my GI. I'm scheduled for a pelvic MRI next week as well. The stinging pain has really gone down to simple stinging.

I spoke with my GI on the phone today and he said that the inflammation needs to go away before they can determine what is causing the stinging. Since my current max dose of Asacol HD and Rowasa haven't contained the flare, he believes we need to step up treatment. He said he's prepared to have me move right to Remicade or Humira but that would be a point of no return. He suggested Imuran + Prednisone tapering for 14 days to see how that all works.

I am both frustrated and nervous about this treatment. For one, I was not flaring when I had my abscess about two months ago. The flare started because the GI told me to stop taking my Rowasa for 2 weeks when I'd never stopped before. I had no symptoms of a flare until 13 days after stopping. Now this flare won't go away.

I'm also nervous about stepping up the treatment. I've had UC since 2006 and never went above 5ASAs for maintenance/treatment. Now it seems I'll need to take an immunosuppressant indefinitely. I don't want to start getting infections all the time and the idea of getting regular blood work is also a big concern.

Does anyone have experience or suggestions they can relay about all this? I am having normal, regular BMs and the only 'symptom' I am noticing is the stinging pain.

6MP has yet to give me a side effect in 3+ years, I'm not sick more than usual, and I have not gotten an infection due to it. I get blood work every three months (reduced to trimonthly after many good test results, more frequently at 1st). We have some who work in heathcare or with small children for their job and are on 6mp/Imuran. I understand new classes of medications are scary, but often we fear the worst and don't actually experience any of those things.

Just be prepared to wait 3 months for immunomodulators to work. Very slow working meds.

I see a lot of people still take 5-ASA medications while also taking Imuran.

Is there any reason why my GI would suggest I stop the Asacol HD and Rowasa then?

I tried to go without prednisone since late March, using only Asacol HD and Rowasa enemas and apparently my inflammation didn't go down, though my symptoms have been under control. That's the reason for the prednisone - to make the inflammation go away ASAP.

The Imuran is in response to the fact that these 5-ASA medications did not put me into remission on their own. I need the prednisone to control the flare, and the areas of inflammation are different than they had been. There is inflammation in my ileum, which is why the GI believes this to be more than just ulcerative colitis. He said it could clinically be called CD, but is appropriate to describe as indiscriminate IBD/colitis.

I feel like it doesn't matter at this point. I'll just take the medication and steroids and hopefully everything works itself out. It's been over 2 months since the abscess and this whole nightmare started and I just want it to end already.

I'm mostly just concerned about discontinuing the Rowasa and Asacol HD. I've taken those both for years - Asacol for 12 years...and now they're suddenly going to be out of my system in favor of an IBD treatment that takes a few weeks to start working. I don't know how this is going to go...

"The larger issue seems to be stinging pain that does not appear to be related to absess or structures shown on MRI. Try to focus on id the pain issue, and don't fret too much about what is past."


dittosky !

your doc seems a bit confused, imo -


EDIT: after rereading your posts, decided pred doesn't make sense with your lack of symptoms -

Plucky, I've been showing inflammation in tests for nearly 2 months while being on only asacol HD and rowasa...you really don't think I need to change anything at all?

What else causes inflammation?

If something else does, would there be a different way of treating it?

I didn't do any course of prednisone prior. He'd suggested it, and (like today) I took one dose before deciding to discontinue.

I'm looking into places to get second opinions. It's tough because I have no idea where to look and I'm not sure how much time that will take.

Thanks so much, Plucky.

Another question: do you think it's OK to stop the prednisone cold turkey after just one dose? It was 60mg, which I know is pretty high...

I'm calling a pharmacist now to find out

"be done with the flare"


ya, but there is no flare to be done with -

I would not get off of the mesalamine oral or rectal meds. I also would want to try Uceris or even a steroid enema (if inflammation is reachable via an enema). I think your Dr. seems a bit confused. I would hesitate to do pred without symptoms. Seems you have other options to try first. I think a second opinion from respected GI is in order.
B

hateuc said...
I would not get off of the mesalamine oral or rectal meds. I also would want to try Uceris or even a steroid enema (if inflammation is reachable via an enema). I think your Dr. seems a bit confused. I would hesitate to do pred without symptoms. Seems you have other options to try first. I think a second opinion from respected GI is in order.
B

I've been able to find a highly decorated IBD researcher GI doctor off the CCFA website. I will be contacting him tomorrow and setting up a consultation ASAP.

I just worry about dragging my situation/inflammation out any longer, when it could be something that requires immediate attention and treatment...