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Prednisone or no prednisone...

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Posted 7/28/2012 1:30 AM (GMT 0)
My Gi prescribed 40 mg daily with a refill and I don't want to take it. I took it before for 5 months and it didn't do much so he took me off. Then I was left with all the nasty side effects... the joint pains, the moon face, the back hump the wt gain. I hate Prednisone and since it didn't do much for me then, why take it now? I understand I have alot of inflammation, but I see surgery looming in the horizon no matter what I do. I only have Humira left to take and unless there is some kind of miracle that works, surgery is next. So again, why mess with Prednisone? To me it'll be a waste of time. Would you take it and go through all the nasty side effects AGAIN? MY Gi knows how much I hate it, but he perscribed it anyway. There are far more cons to taking this drug than pros. Osteroporosis is another major issue I have with Prednisone. Last time it messed up my left hip and right shoulder joints. I'm 57, menopausal and at this stage of the game osteopororis from Prednisone is very likely. I don't want to end up in a w/c before my time. I'd rather have an inflammed colon than not being able to walk. Eventually the colon will go and I still want to be able to walk.
Posted 7/28/2012 1:41 AM (GMT 0)
Honestly, I wouldn't take it. I'd go ahead and try the Humira, but consult with a surgeon in the meantime.
Posted 7/28/2012 1:43 AM (GMT 0)
have you talked to him about surgical options ? maybe it's some sort of pre-pre-op protocol, i don't know -
if not, then i say to him " heck no i don't want no predno"
let's just pray for that miracle -
great name btw :-)
Posted 7/28/2012 2:02 AM (GMT 0)
We've talked about surgery and of course he wants to try the Humira which I have no problem with. He also wants me to go to the IBD clinic in Philly at the University of Pennsylvania to see what they have to say. I'll go and talk to them, but I don't think the outcome will be any different which will still be surgery in the near future. BUT we'll see what they say.

"Heck no I don't want no Predno!" LOL... Great line!
and there's always room for that miracle. *wink*
Posted 7/28/2012 2:27 AM (GMT 0)
there's two ways to look at life: that miracles don't exist or that everything is a miracle.

love that quote!!

anyway, stoolie, i had a very bad experience with prednisone so i can understand why you don't wanna take it. if it doesn't help your symptoms, then i wouldn't bother with it. you'll get more bad than good. have you tried any other biologics? i think you have a great chance of doing well on humira. i had MUCH less side effects when i was on remicade as opposed to the hellish prednisone.
Posted 7/28/2012 2:45 AM (GMT 0)
I'm soooo hoping for at least a little miracle from Humira. No, I haven't tried any other biologics. The thought of losing my colon is devestating, but what use is a colon that is so diseased and not functioning? It makes no sense to me to keep it and to try to make it work with all of these drugs when in reality it's not going to happen. I'd be much happier without it and I'll be able to get my life back. To tell you the truth, I'm looking foreward to when my GI says, "Ok, then let's proceed with the surgery." O happy day! No more colon, no more drugs, no more colonoscopies....yippeeeeeeeeeeeee!!!!!! No more worrying about am I going to be able to get from point A to point B without messing myself up? Oh the embarrassment. I'll have a real life again.
Posted 7/28/2012 12:46 PM (GMT 0)

Stoolie said...
I'm soooo hoping for at least a little miracle from Humira. No, I haven't tried any other biologics. The thought of losing my colon is devestating, but what use is a colon that is so diseased and not functioning? It makes no sense to me to keep it and to try to make it work with all of these drugs when in reality it's not going to happen. I'd be much happier without it and I'll be able to get my life back. To tell you the truth, I'm looking foreward to when my GI says, "Ok, then let's proceed with the surgery." O happy day! No more colon, no more drugs, no more colonoscopies....yippeeeeeeeeeeeee!!!!!! No more worrying about am I going to be able to get from point A to point B without messing myself up? Oh the embarrassment. I'll have a real life again.

I felt absolutely horrified when I realized I had no choice left but to have surgery. But on the same note, I was so relieved. This is just my two cents but I believe the biologics are just a band aid and that eventually they stop working. I wish I skipped the Remicade. I wasted another whole year of my life hoping it would work. Its so nice to be done with UC for good. I am so grateful for this surgery! Whatever happens for you, I wish you the best! :)
Posted 7/28/2012 7:44 PM (GMT 0)
Stoolie, you have Crohn's colitis..do you have any other areas that are affected by CD?

I would never do prednisone in your situation...

Maybe Humira is a good option for you..

q
Posted 7/28/2012 7:59 PM (GMT 0)
Stoolie,
Was that your original diagnosis in Feb or 2011? That seems so quick to possible surgery, compared to other stories. Just wondering. How long did you have symptoms before 2/11?
Posted 7/28/2012 10:53 PM (GMT 0)
     Hi Michele!  Read where you may go to Univ of Pa for your condition.  A word to the wise, if it is to see Dr. Liechenstein, save your money and your time.  My GI doctor thought Dr. L was a GOD amongst GI doctors (next to my GI doctor that is..lol).    about four years ago, I was soooo sick and refusing Remicade, which my doctor was pushing.  He referred me to Dr. L who is a big shot GI doctor at the Univ of Pa.  All he did was talk about himself and the articles he wrote, where they were published, yada, yada, yada.  I couldn't care less.  When he finally got around to discussing my condition, he agreed with my GI doctor's method of treatment.  In other words, try the Remicade, then Humira, and after that any other biologic that comes down the pike.  I returned to my GI doctor, discouraged.  I finally tried Remicade and it failed after my 3rd infusion.  I tried Humira and no change after three months on it.  I became prednisone dependent.  Prednisone was the only drug which really helped me anyway, but it ruined my bones, gave me uncontrollable high BP and type 2 diabetes.

     I had my surgery at Pennsylvania Hospital by the head of colorectal surgery at Univ of Pa, Dr. Robert Fry...excellent surgeon!!!  No regrets!  My surgery was performed on June 28th of 2010 and I was 63 at time of surgery.  I suffered with UP for twelve years prior.

     The best of luck to you.

Posted 7/28/2012 11:39 PM (GMT 0)
Have you considered trying LDN?
Seems to me it's worth a try before considering surgery.

Check out InSoFla's story posted by Red_34 under the second UC post " Ulcerative Colitis Resources".........about 11 posts down.
Posted 7/29/2012 1:22 AM (GMT 0)
@ natual curl: Yes original diagnosis was severe pancolitus in 2011. It does seem really quick. I've tried just aboutall of it except for the Humira and Remicade. To tell you the truth, I don't want to go on for years trying too much more. The Imuran and Asacol seem to be holding me for now. A couple of weeks ago I went through a period as if nothing was working, I guess it was a flare of some sort. I had urgency, diarrhea, pain, I was messing myself up, but then it fizzled out after I took some imodium for a couple of days and it seems to be better now, but I still have to run to the BR whenever I get an urge to go or it's all over...literally. I had symptoms of I think proctitis since 2008. but I chalked it up as probable hemorroids and never really persued any treatment because it really wasn't that bad.

@ Quincy: The last colonoscopy in June the GI said, "looks like you have crohns-colitus" and that was all he said about that.

@ Christine: OMG Yes, Dr L. IS the Dr I'm supposed to see. So it sounds like it'll be a pointless appointment and a waste of my time and his. Thank you for the heads up. I'm just so discouraged at this point with all of this and I don't want to go on for years trying this and that like alot of people are doing. I'm not 25, I'm 57 and time is of the essence I want to live the remaining years that I have not being stuck to the toilet.  My colon is so bad that I just can't see how it can be saved and used the way it was ment to be used. I haven't had a normal stool in almost two years and that's too long for me. Forget the Prednisone it'll suck the life out of my bones and leave me a cripple and I don't want that. I'd rather get rid of the colon than be an invalid using canes and wheel chairs way before my time. Why us???? *sigh*

Post Edited (Stoolie) : 7/28/2012 7:55:43 PM (GMT-6)

Posted 7/29/2012 6:47 AM (GMT 0)
Stoolie, I wish I had the surgery much sooner. It is such a relief to deal with healing instead of unpredictable sickness. You have already been through so much, you deserve a healthy life. I hope you have a great improvement in your quality of life no matter what you decide.
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