back on the pred :(

So...after I posted about my last colonoscopy not being great news...i went to see my doc.

He says I am still inflammed all the way through (pancolitis). I am not having the diarhea I used to since being on Pentasa, but he says we cannot leave it inflammed. He put me back on 60mg of pred...and in a month I have to go see him to start either humira or imuran or something..I can't remember what exactly he said (can't believe I'm not getting better).

I'm so frustrated and feel like I'm getting closer to surgery. He says I'm still a ways from that...but what if these meds don't work.

I have been so careful what I eat...took all my meds as directed...didn't drink much...exercised when I could...but still lost weight, felt crappy and continued to battle this thing...now on with the scary drugs. I HATE that I'm back on pred.

I trust my doctor, and he even mentioned that if I was reluctant or felt at all nervous, he could send me to another specialist to get another opinion on everything and for the guy to maybe give me a better understanding of what's going on.

I just want to get some weight back on...and get on with things...without these crazy drugs..but I don't see that happening.

I never hear of any wonder stories about these biological drugs..was always under the impression that they just prolong the inevitable...true? or do they help?

What now...just wait and see? How can I help myself. I just want to be healthy and I'll do what I can to get there. Right now I'm trying to take advantage of being on pred for a few months and pumping in the calories to put 5-10lbs back on. (I lost 25lbs over the last year from 170 to 145). In a bit as I taper I'll settle back into my usual safe diet.

These drugs are going to kill me before the colitis does...

I hope you get feeling better soon.
Did your GI give you a reason for waiting a month to start you on a new drug? It seems that you should go ahead and start that now, so that you can get off the pred faster.

I agree with fruit girl- if you're going to go on the stronger meds than you should get on them sooner to get off of the Prednisone. I feel your pain. I am in a flare and just got discharged from the hospital today. I was on Pred 40mg orally before I went in and then shot me up with IV Solumedrol 60mg while in there since Monday. I am back on Pred 40mg for two weeks and then we will start to taper. I used to take 6MP (Mercaptopurine), it's an immunosuppressant- I believe in the same class as Imuran. It worked well for 4 years and only had 1 flare since then but I guess all of these meds eventually stop working:( I also took Remicade, one of the biologics. It worked well the first time and then I reacted the second time around. I think they infused it too quickly and I reacted with throat swelling, hives, etc. I just had a scope on Tues and my disease got worse but it's only on the left side. My dr does not want me to do surgery. He wants me to try Cimzia or Humira. Ironically, I want surgery and have it scheduled for Oct 5. I don't see why I am proloning the inevitable. I met with a surgeon who said I would prob have to have surgery within 5 years so I say let's just get it over with. If you want to try the meds, I would urge you to get in to see your GI sooner because the immunosuppressants take 2-3 months to kick in. Maybe you can also try one of the 5ASA's. Lialda worked for me. Asacol and Colazal gave me migraines. They can help you get into remission sooner while the immunosuppressant kicks in. For me, I believe surgery is the way to go. I've had UC for 10years and that is the mark where chances for colon cancer go up and everything else. 6MP may cause lymphoma so I couldn't stand taking it. The Prednisone is giving me blurred vision, acne, moon face, insomnia, increased appetite- all the fun stuff. I can't wait to flush all my meds down the toilet. Hang in there and best of luck.

I forgot you said you were on Pentasa- didn't realize it was a 5ASA. I say if it is working for you than you shouldn't switch just for the convenience. I say this because a lot of them cause headaches and nausea and you probably don't want to have to deal with that too if the Pentasa is working. There are definitely people who stay in remission- it's just some are luckier than others. I, unfortunately, have a Type A personality and stress over everything- which is exactly what this disease cannot tolerate. Personally, I think surgery is the best option for me, I think you just get to the point where you're "over it" and don't want to take any more meds and deal with the flare ups. I hope you can get some relief soon!

I've been on 3 pills of imuran daily (I don't know the mg) for four years and was symptom free. I found I suffered from its side effects (sore joints, blood shot eyes) for the first few weeks and then they vanished and I was completely fine. I sometimes think of the long term side effects, but I wish I could live symptom free on imuran forever. I am currently in a flare and have had imuran increased by half a pill. I also take 500 mg of salofalk split between morning and night and salofalk enemas nightly. Im thinking Im going to have to go back on a steroid as Im not getting better, and my doctor was telling me about entocort, it seems to have less side effects compared to prednisone.

Hope this is somewhat helpful. I just know without these drugs I wouldn't be here. As when I first had symptoms I was left for 6 months, waiting for a colonoscopy being told I had hemorrhoids... after losing 35 pounds and needing a blood transfusion, it wasn't hemorrhoids but pancolitis.

mel

In 2005 I was diagnosed, by July 2006 I was done my round of prednisone. I then began imuran and I was in remission from 2006 to April 2009. I probably would still be in remission, but this April I had alot of stress with losing my job and my father being very sick. But it is possible. The flare I am in now is only up to my left side and its not full ulcers just inflamation.

I have always had pancolitis. and am in remission with Remicade.

I always remind myself there are worse drugs than pred. And I agree with the others around here that it seems weird that you aren't overlapping the pred with starting a new drug. Maybe, just to be thorough in your understanding and treatment options, you should take your doctor up on his offer for a second opinion? It's probably never a bad idea!