Taper advice

I've had some positive changes since last time I posted on here. I'm currently down to about 7 bms a day. Very little blood. What blood I do see may actually be a hemorrhoid. I'm starting to see some formation as well. I've even farted a couple of times this past week while not sitting on the toilet (first time in over a year, holla!)This is from 15-20 bms a day, no signs of formation at all. Just complete miserableness. Now I'm feeling good.

Now my doc believes it is the prednisone that is helping and nothing else. I'm on 150mg of Imuran and 10mg per k of Remi. I've been on the Imuran and for a month and have had two infusions of Remi. I fully believe it's the Remi and Imuran helping (although I'm sure the pred is helping some). Anyway, I was on 50 mgs of pred for a few weeks, once I started feeling better I dropped to 40. Now my doc is telling me to drop 5 mgs every two weeks. That seems like a long taper and I'm hoping to speed that up.

Background, my doc is not the one that put me on Remi and Imuran. I was admitted to a hospital out of state and that was started there. I'm getting the feeling that my doc is being a bit of baby in saying that he doesn't believe it's the remi and Imuran just because he didn't prescribe it. The reason I don't believe it's just the pred is that i feel like i have been on it too long to just now start feeling this much better.

Anyway, this is kind of scattered, but based on my current symptoms of 5-7 bms a day w/ urgency, would anyone recommend that i try and speed up my pred taper or have any other ideas on a taper other than dropping 5mgs every two weeks?

Thanks for any input.

I would not drop the Prednisone right now. Wait until your are in more of a stable condition. & BMs with blood/urgency still means you have a lot of inflammation going on. Hold on a while longer at the current dosage to see if things keep improving. Then start the taper.

How long have you actually been on the pred? Let's assume for a minute that your doctor is correct in that neither the Remi nor the Imuran are helping you and it is only the pred. If so, what is his gameplan (sounds like surgery)? You can't take pred forever. It will destroy your body. Now that I've gotten that out of the way I am going to say that you are probably correct that either the Remi or the Imuran or both are what is helping you and not the pred so much. Having said that, I agree with Indy in that now is not the time to go animal on tapering the pred. Since you may need a relationship with your doctor I would just follow his orders on the taper. I would keep up with the pred until you are in total remission and then if you want you can speed up the tapering process because hopefully you will be correct in that the other two are what is working and you will be able to get completely off the pred.

I'm just trying to get off the stuff as soon as I can, but I get what you guys are saying.

The pred has been tricky. In July, my doc prescribed me 30mgs to taper by 10 every 7 days. After about 4 days at 30, I noticed some improvement. When I tapered to 20, I regressed after about 4 days. At this time I was on no other meds while I was waiting for Simponi to be approved. After regressing, I moved myself back up to 30 without as much improvement. So I was on roughly 30 mgs for a month. In August, I went to Emory University Hospital and they bumped me up to 40 mgs (IV a couple of days, oral for the rest). They also administered my first dose of Remi. Left Emory after a week without much improvement. When I got home, I increased my pred on my own to 50 mgs. Still having 15+ BMs a day. So I was 50 mgs for about 2.5 weeks with no improvement. about 2 weeks ago, my numbers started dropping and I started feeling much better. I decreased my pred to 40 1.5 weeks ago and like I said, no set backs (yet...)

I like to think I'm pretty in tune with my body (although with UC that's changed drastically). I just have strong feeling it's more the Imuran and Remi than the prednisone. Maybe it's wishful thinking, maybe it's me being naïve.

Regardless, based on this past year and not having luck with meds, and having surgery recommended by two different doctors, I feel like that is probably going to be the outcome at some point. I just want to get a little bit of relief and live a normal life for a little bit. I do not want to be on Imuran or Remi for too long and at some point, I will probably take my chances on Lialda keeping me in remission (if I get there). If not, I'm close to a point that I would choose surgery over taking the hardcore meds for the rest of my life.

Are you still taking Lialda? Your siggie says you quit. Personally, I think if you are going to rely on the hope that Lialda will keep you in remission later then you should be taking it now too, along with the other stuff. It's pretty unusual to use Remicade and Imuran to bring on remission and then quit because you don't want to take it long term. Most plan on taking it for as long as it works.

not dumb to want off pred - but I'm assuming you're not experiencing any wild sides from it - that there's a big reason folks want off pred quick - the flippin side effects are unbearable - I would definitely stay on it a bit more, hold off on tapering, and enjoy the ride - at least for now - the future ? who the hell knows - you have your head in the game as far as surgery goes, so at least you're somewhat prepared for that possible future -

the lialda question - I don't think it will hurt you in any way - will it help at this point ? good question -

what about a new doc ?

"I've lived a pretty healthy life and never had to be on too many meds and I just hate the idea of it now, even though it's a reality. "

ya, well, reality sucks ! I always hated the meds too - but I'm glad they were there when I needed them -

I say keep doing what you're doing - it sounds doable for now - certainly not perfect, but then again, what is (well, actually there was this one girl in high school )

+1 on the mj !

jacket fan said...
Ipoop- are you in full remission? How long have you been on your cocktail? do you plan on staying on it for as long as it works?

I believe myself to be in symptomatic-remission, 1 formed bm a day without urgency, blood, mucus, etc. Although, I have not yet had a scope to confirm whether it is clinical-remission. I was on just lialda and rowasa for 1.5 years and then the flare from hell struck. Afterwhich, I added both 6mp (been on it 1.5 years) and then remicade (been on it for a year now). Yeah, I plan to stay the course as long as it works. Worstcase scenario, I know I can get my 6mp dose increased, remi dose increased, and the time between infusions reduced. And as you said, there is always entvyio or surgery. I respond very slow to uc meds. Noticed a improvement a week after second remi infusion, a much bigger improvement a week after my 3rd infusion, and gradual improvement ever since.