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Tapering off pred, symptoms coming back....prednisone dependent!?!@#

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Ulcerative Colitis
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Posted 4/16/2009 3:47 PM (GMT 0)
I started off with 40mg of pred...aside from the typical pred side effects, my flare at the time cleared up pretty quickly....sometimes a symptom or two, but for the most part, it worked out great...

Well, I am down to 10mg now, and back comes the blood, cramps, mucous, and urgency... I am pretty bummed about it because I am now a classic case of prednisone dependent... I honestly would love to just stay on pred - I would rather deal with the side effects than the UC inflammation but according to my doc, it is really rough on the body....

So, I go next week to see another specialist in the Pittsburgh area to look into Remicade. My issue is the non-cancerous tumor I had on my pituitary gland - they are a little cautious in starting me on Remicade.

I am a bit nervous because I am running out of options heading down the path of surgery, which is not somewhere I want to go if it can be avoided.... If I dont have cancer or risk of imminent death, I am going to try to tough it out as long as possible until better treatment comes out or even some cure....I just hope to hang in there.....

It is getting hard to keep positive... I thought since being put on Paxil recently I would have a better advantage since I am much more calm inside - it really helped calm down the prednisone jitters.....but since tapering my UC is hammering back with avengance...and I am pretty pissed....

Just had to rant....
Posted 4/16/2009 3:51 PM (GMT 0)
Well I am sure you would be fine very soon. My good wishes for your speedy recovery are always there and so is my support.
Posted 4/16/2009 10:54 PM (GMT 0)
     Has your doctor mentioned trying 6MP before going to Remicade?  I know exactly what you are going through...been there.  Fought my GI doctor about going on the 6MP, but relented five years ago.  Then, last year, I suffered a really bad flare, had to be hospitalized for ten days.  Doc was pushing Remicade.  His associate disagreed with him and so did I.  I was exposed to the TB virus years ago and Remicade could activate the virus and it could actually kill me!  Forget that!  It took me seven months, but I finally achieved remission last Nov 1st...yippeee!
Posted 4/16/2009 11:31 PM (GMT 0)
Prednisone has horrible side effects from long-term use, so your doctor is correct in not allowing you to stay on it. However, prednisone also doesn't work long-term. It won't keep patients in remission, it can only help patients achieve remission. At any rate, I hope you improve soon.
Posted 4/17/2009 12:05 AM (GMT 0)
I know how you feel and it sucks! I have pancolitis as well. Have you tried 6mp yet? That's what I'm going to be on soon. I'm so afraid that it's not going to work then it will be on to Remicade. What has made me feel a little better is reading about ppl who have gotten the j-pouch. They all seem happy with their decision. Ugh, I just wish I didn't have to think about it at all - it's not fair!
Posted 4/17/2009 12:27 AM (GMT 0)
I have a similiar story and ended up going to Remicade - and it still took the 5th infusion for me to get to a place where I could go taper off Predisone (starting at 40mg)   -  but now I am off the Prednisone and just on Remicade and Imuran -  I had been on the Predisone for about 14 months and attempted to taper at least 3 times before it worked.   Good Luck - I know it is hard

 

Posted 4/19/2009 4:58 AM (GMT 0)
can you get disabilty
Posted 4/20/2009 2:43 AM (GMT 0)
Not sure disability is an option for me at this point. I own a company and my absence would cause the company to fail....which would put 6 people out of work, including my wife....which would also be the end of my health coverage....

Gotta stick it out.
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