Too much to ask

I don't know where to begin. I usually get on here to find info and it is a life saver! I recently had a flare up and my dr was on vacation so another gastro took over until he got back. He put me on 10mg prednisone for 11 days and then stopped it. I got another flare so my dr put me on 20 mg of prednisone and after a few weeks increased it to 40mg. after being on it (it seemed like a month) he tapering off to 20,10 then off of it. I got seriously sick while I was taking it because I was also on asacol hd 6x's a day, Norco 725's for pain, Bosmed 500 2x's a day, Genessentials probiotic 2x's a day. I had a colonoscopy done july 29th and it was severe for the first time in the history of 8 years having this disease. It has remained in the same spot, the last 5 or 6 inches of my colon. I am wondering if the off and on again of prednisone made my flare worse? Also after my colonoscopy when I was still waking up my dr asked me if I wanted to try humira or stay on asacol. Those were my ONLY options. Well, still being drugged up and feeling horrible I said I would like to try something new. So I got the TB shot and after I got home I looked up the drug and realized I didn't want to take it. The side effects scared me. So I have been on Asacol alone for 6 days now after I tapered off the prednisone and I feel like I sometimes need something else to get me into remission. I am afraid of getting sick again and I have times during the week where I have to call into work because I can't even hold myself up. I've called him and told the nurse that I have no energy and still have blood in my bm's and she said theres nothing but 20mg of prednisone to put me on until I see him aug 28th. I am refusing to take it. Is that a dumb thing to do? I am watching what I eat and am making a smoothie everyday with a banana, ice, rice milk, nutritional yeast, spinach and a scoop of vanilla spiru-tein. It has perked me up and made me feel alive again. Any help/words would be appreciated.

Yes, you should continue your prednisone until your body is healed enough to get off of it; otherwise you will just return to a uc flare up state (as you should notice is happening the moment you get off of pred).

Well, based on your pattern it sounds like the asacol hd is no longer enough for you to maintain remission. Prednisone is like a crutch, it limits your immune system's attack on your large intestine which enables your body to heal through your other medications, but those other medications no longer seem like enough for you. You have proctisis, so you might have good luck with rectal suppositories (e.g., Cansa) or enemas (either a steroid-based enema such as proctofoam or a meslamine-based enema such as rowasa) before you move up the ladder of medications for uc. Cansa has the same active ingredient as your Asacol HD. The Rowasa enemas are also the same medication as your Asacol hd, but taken through another avenue. The steroid enemas are only about 10% systematic whereas pred is 100%.

Typically, you have immunosuppressants (e.g., imuran, 6mp, aza) to try before you get to biologic medications (e.g., remicade or humira). The disadvantage of the immunosuppressants is it takes months for them to kick-in, they build up very slowly in your system, so it means being on a high dose of pred for months. Where as the biologics typically take weeks to kick in, which is probably why your GI is recommending humira.

Yes, immunosuppressants and biologics carry serious, but let me emphasize statistically very rare side effects (less than 0.05% of people get them). You may not be ready mentally to take them, mostly you need to calm yourself and read up on the actual odds of getting the side effects you are no doubt worrying about. You have a much greater statistical risk of death in a car crash then you do of contracting a serious side effect from either immunosuppressants or biologics.

For some of us Prednisone does more harm then good. I took one 50mg pill 15 years ago when I was diagnosed. That was the last one I ever took. For me that stuff is poison...

I agree with fruitgirl. RECTAL MEDS!!!

with all the bleeding, have your blood iron checked. get an infusion if you are anemic.

Thank you everyone sooo very much! I have taken the rowasa enemas in the past and found they did nothing for me. I have never tried anything but Asacol, Asacol HD and Prednisone for the 8 years I have had UC. Would the enema or suppository and Asacol HD work if taken together? My Dr did mention Rowasa ememas but I told him they didn't work for me. He didn't mention any other drugs to me and I wonder if it's because they aren't strong enough? I think I will ask him about rectal meds and see if maybe one I haven't tried might work this time around. This is the most support I have ever received from such amazing people who make me feel like I am part of their family. Thank you so much!

Quincy,

It was so many years ago and I believe it was months I was on Rowasa enemas and Asacol. Mind you, My Dr at the time was not a GI doctor. That might have been the problem. I will try them again