Help with questions for doctor

I have an appointment with my doctor next Wednesday, and I’m looking for some advice on questions to ask him. Here’s a rundown of where I’m at:

-I’m currently taking asacol, rowasa, remicade, and prednisone.

-I’m on prednisone for the second time since July. This time I started at 40mg for 4 weeks, with a taper schedule of 30/20/10/5 every two weeks. I will be down to 5mg tomorrow.

-The prednisone greatly improved all of my symptoms during the first two weeks, and then maintained the improvement until I tapered to 10mg. At its best, frequency was 6-7 times per day, urgency was manageable, and there was no visible blood. It was awesome.

-Since tapering to 10mg, frequency, urgency, and bleeding have been getting steadily worse. I’m now going an average of about 12 times per day, with blood on the paper most of the time. I can feel the inflammation in my rectum getting worse, and am starting to get some mild tenesmus, which is also getting worse.

-I was able to retain the rowasa while on the higher dosages of prednisone, but now I’m only able to retain it for a very uncomfortable 1-2 hours max.

-I will be getting my fourth remicade infusion next Wednesday also. I didn’t notice any improvement after the first two infusions, but I *may* have seen a slight improvement 4-5 days after my third infusion. I was on 30mg of prednisone at that time, so it’s impossible to know what was really going on or what to attribute it to.

Last I spoke with my doctor, during my third remicade infusion, we were both in agreement that we don’t want to give up on remicade until I’ve had at least a few more infusions. His experience is that remicade can take longer and work more slowly in patients with UC.

So anyway, all I’ve come up with to talk to him about is:

1. Should we consider increasing the remicade dosage if I don’t see improvement after this infusion?

2. Is there anything we can do in the meantime to help with the frequency, urgency, and tenesmus?

3. Since I’m having trouble retaining the rowasa, should we consider switching to a suppository or a foam enema? What about a steroid enema?

Sorry for such a long post, and I really appreciate the advice.

Have you taken any Bentyl, or similar drug? Imodium might be an option also.

I got stuck at your tapering itself and wondered how will you do below 20. I have never went to 10, after 20mg. 20mg and then 15mg, and longer duration below 20. Say you are 2 weeks on 20, I would go 3 weeks on 15, then 3 on 10 and then 4 on 5. The idea behind Pred tapering is, the adrenals should pick up where pred leaves. For that to happen, you have to taper very very slowly. Slower the tapering, better for your adrenals to pick up.

Bentyl slows down your intestines, so the cramping that stems from inflammation is also relieved. If you still have cramping, add tylenol to the mix. I have rarely added tylenol as Bentyl itself does the job for me. Lomotil is another option, but has become controlled substance lately. Little drama when you go fill it up.

What about combination therapy, remi + azathioprine? Isn't that supposed to be the most effective way to treat with biologics?

See www.medscape.com/viewarticle/836061_1. You might have to log in but it is free.

"these data have demonstrated that the addition of an immunosuppressive to anti-TNF therapy improves treatment efficacy for IFX in UC and Crohn's disease. It is reasonable to conclude that combination therapy would confer an efficacy benefit for other anti-TNF agents as well given the clear impact on pharmacokinetics, but definitive data are lacking and comparative effectiveness studies are needed (figure 2). When considering risks of therapy, the use of combination therapy appears to add no significant incremental risk for serious infections above that seen with anti-TNF or immunosuppressive monotherapy in most patients. It would thus appear that combination therapy is the superior treatment strategy for the use of anti-TNF agents in IBD patients..."

Wow, this is great, thanks everyone. I have a bunch to ask now.

That's a really good point about the different dosages/medications and knowing what is working. I'm just really worried about sliding back to where I was before prednisone. I will definitely talk to him about maintaining something like a 20mg dose for a few more infusions, I don't know what he'll say...

I tried azathioprine before remicade, and it caused pancreatitis. That was very painful. Anyway, I was told that imuran and 6mp would do the same.