I'm flaring...but terrified of taking Predinsone

[cca2013]

Happy MLK day everyone! :smile:


Well, as many of you know I started flaring in Aug...ended up hospitalized for nearly two months...had the worst flare ever in my ten years of CD...even had a stricture, that seemed to disappear when given remicade.

NOW:

I don't know what's going on with my body. In the past when Remicade was given to me it would last until my next infusion (6-8 weeks) and I would feel awesome. Now it seems to only last one week. :confused2: After my last infusion, the urge to poo went away the same day, and I didn't have any pain or have to use the toilet for a few days. Then on a Saturday when I finally have to go, I'm a bit constipated at first, then comes the d and a full flare again. :eek2:

I'm so sick and tired of being sick. And not only that, but I now have kaiser and it's been hard to get a referral to a GI because Im on probation at my job and can't miss any days! Which therefore makes it a bit difficult to get an appointment.

I have some extra prednisone left over, but I'm scared of taking it. When my flare first started in Aug, it seemed that once Pred was given to me, my health went downhill very quickly. All of a sudden my flare was even worse, my energy was zapped out of me and I couldn't even lift my head.

If this was a few years ago, I would've downed the pred like candy...because it used to work so well for me and would help my intestines to calm down.

But now...I'm not sure.

Would you talk the pred or just try to "deal" with the symptoms and wait for another infusion?

 

[kauffman08]

I just started Prednisone for the first time in 7 years after diagnosis.. needless to say the no doctor treatment wasn't doing it for me!

How much Pred do you have left? Would you need to taper on and off? Or is it just enough for like a week?

One question for YOU also.. how does the Remicade make you feel? How long is it supposed to last? I'm scared of these long term types of drugs =(

 

[DayDreamer]

Hey cca2013,
Im Still new to the forum community but i am off all medication except for asacol. Reason why is because its pretty much aspirin but 1 molecule different so it dissolves in you intestines rather than your stomach and very very few people have experienced long term effects. That being said i was on prednisone and the doctor wanted to put me on Humira...bla bla bla. I feel amazing being off all that stuff, haven't been hospitalized in 2 years and dont plan on it. Ive drastically altered my diet and that has help tremendously, obviously each person is different so what might work for me might not work for you...but dont give up hope. If I can do it so can you, I still have a long way to go but so do we all. From other people ive talked to you just cant quit alot of these medications but it can happen over time. If you ever have heard of the movie "fat sick and nearly dead" and have never watched it i definately reccomend it. It saved and changed my life, also look for a book called the china study, that would help alot too. If theres any questions just let me know and ill do my best to answer them, time for my 5th meal of the day. Hope it gets better for ya.
-DayDreamer