Back on Prednisone

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Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 10/23/2009 9:38 PM (GMT -7)   
I went to the GI today and the Flagyl and Cippro haven't done a thing for me in the last 3 weeks. Last week I was feeling about as bad as when I first got diagnosed. I could barely walk because I could feel my intestines scream with every step <bleh>. I felt a little better today but I need them to get this under control. I'm too busy to be sick and feverish all of the time turn

They've put my on Prednisone which I never thought I would do again but I welcome it this time. I guess when you feel like crap, side effects don't matter as much any more. Besides I could gain a few pounds, I lost another 2 pounds and I'm down to 123 which is the lowest I've ever weighed in my adult life. I just LOOK sick and I hate it. (For my substance abuse class we had to act of the good and bad of different drugs and while I was in the restroom I'm pretty sure they were talking about me behind my back saying I should be the addict because of how bad I look right now) The good news is that they are letting me semi-wean myself onto it because last time they just started me at 30mg and I remember feeling like I was falling off the earth lol. By Monday I'll be up to 30mg and hopefully it won't hit me as hard this time.

I'm hoping that this will allow my intestines to heal up a little and give my fistula a break until the Cimzia can start doing it's job. I've been getting worried about it because I don't know if I can live with this forever (the fistula...obviously I have to live with the CD forever lol). I'm running out of medications to try to fix it and they said that surgery is the last resort because it isn't completely superficial. They said I could end up being 26. I can't deal with that either.

I'm a hot mess right now. I was doing so well for a few years and had pretty much stopped taking all medications except for my 16 Pentasa but now I'm back up to 26 pills a day plus Cimzia (and I'm about to add some more once I see mental health next week for my depression). I dislike taking so many pills because really we don't know what all of this does to us in the long run.

Anyway, I've just had a few frustrated/scared moments in the last few weeks and wanted a hug or two. I'm really looking forward to eating normal food and feeling better from the Prednisone though :P Who woulda thought I'd be happy to be on it again lol.

love love
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 10/24/2009 7:59 AM (GMT -7)   
(((MissCris))) I am so sorry to hear you are feeling so poorly. I know it sucks having to take so many meds, but with this dd they are a necessary evil. Sending healing prayers your way.

Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Becoming undone
Veteran Member

Date Joined Jul 2007
Total Posts : 927
   Posted 10/24/2009 4:56 PM (GMT -7)   
sending ((((((((((((((hugs))))))))))))))))) your way, Misscris. I hope the prednisone helps.
"The earth laughs in flowers"

Regular Member

Date Joined Jan 2009
Total Posts : 21
   Posted 10/24/2009 5:26 PM (GMT -7)   
hey...sorry to hear that you are really sick but good luck to you...o by the way i was just put back to prednisone again too..=(....(i can relate how you feel)....but cheer up...tomorrow is a better day.....hehe..

Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 10/25/2009 5:20 PM (GMT -7)   
Today is day 3 of the Prednisone and I feel a million times better already. It is so worth it because being sick was starting to affect the service I gave to my clients which is not ok. I'm hoping that I'll stay feeling well for the rest of this school year :) Thanks for the hugs and prayers.
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

Regular Member

Date Joined Oct 2009
Total Posts : 57
   Posted 10/25/2009 6:55 PM (GMT -7)   
I fully understand how you feel i just went back on prednisone again a couple weeks ago and though i hate it i also love it. I hate the 70 lbs i have put on over the last 2 years but it is amazing how good it feels not to be doubled over in pain every day. my dr started me off on 30 this time as ive always been on higher (highest was 100mg) but unfortunately i have to give myself 4 needles of insulin a day as it sends my blood sugars soaring. 30 for me isnt quite enough cause im still bleeding on and off. Well go see the GI tomorrow am so i guess i'll see what is next. Hopefully hear from my insurance co soon so i can start the remicade.

Glad to hear your feeling better hopefully u don't have to stay on the pred too long but at 123 lbs maybe u can use a few pounds lol.....if you figure out a way i could lend you a few lol

Carnival Huckster
Regular Member

Date Joined Oct 2009
Total Posts : 159
   Posted 10/25/2009 8:20 PM (GMT -7)   
Hi Miss Cris,

I was on "the Pred" for 2 years (an average of 20mg per day, sometimes more and sometimes less) but I had to eventually be taken off because of the psychological side effects and alarming drop in my bone density. What worked just about as well for me as prednisone was Entocort -- it seems to be roughly as effective as prednisone, but my doctor tells me that there are far fewer side effects. She said something about how it is metabolized in the intestines and tends not to circulate throughout your entire blood system like prednisone. On the other hand, my grandfather, who is a doctor and has a moderately bad case of colitis, took a low dose of prednisone every day for 40 years and is still doing pretty well at the age of 95. Go figure!

34 Year Old Male
Crohn's Disease for 12 Years
Current Medications: 9mg entocort (budesonide)
100% SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries

New Member

Date Joined Oct 2009
Total Posts : 6
   Posted 10/26/2009 6:23 PM (GMT -7)   
I just had a horrible experience with prednisone recently. It was right before prom and I was on 8 pills of prednisone (1600 mg) a day. NO LIE THAT WAS WHAT MY PREscriptION BOTTLE READ!!! I pretty much went pyscho all the time because it messes with your emotions so bad, I've always had clear smooth skin, but i started to get all sorts of horrible acne. And my cheeks puffed up so big when i looked downward, all i could see were big chunks of flesh that were my cheeks. People at school were always asking me, why are your cheeks so fat???? did you have your wisdom teeth removed?? no im just on a bunch of steroids that are making me crazy.
I talked to my doctor a few weeks after a different doctor weaned me off the steroids and he was APPALLED at how much i had been taking! There was clearly a misunderstanding/miscommunication with my pharmacy but I was pissed. It really ruined the end of my junior year. I will NEVER go on prednisone again...honestly even though it made me better for a little, I just got sick again and its not worth it to me.
Just a word of warning, read your prescriptions! and if anything seems weird (1600 mg a dayyyyy!) call your doctor or pharmacy! I would not want this to happen to anyone else. :/

Now Im having another horrible flare up and feel hopeless and scared.

Regular Member

Date Joined Jun 2006
Total Posts : 321
   Posted 10/26/2009 10:30 PM (GMT -7)   
I'm hoping to only be on them for about a month before I start to taper off because I don't enjoy the joint pain that I know is coming my way lol. I could definitely stand to gain a few, but I'm trying to be careful and not go all crazy like I did last time. All I ate for 2 months straight was loads and loads of sweet and sour chicken. It was the only thing that sounded good and I couldn't get enough of it. I think I gained about 20 pounds in 2 months =\ I don't want to really gain weight right now, I just want to look healthy again.

I'm sorry to hear you are having such a rough time right now Wish :( I told my doctors about a year ago that I would rather die than go back on Prednisone because it was so awful the last time. I think the difference was that I was feeling fine at the time and right now...not so much. There have been days in the last few weeks that I really felt like I was close to death, especially from the weight loss. I would stand up and really feel like I was going to fall over and die by the end of the night. This DD has wrecked havoc on all of us in some way or another, its just about finding what works for you. It sounds like your bad experience will stay with you for awhile but at least now you are better educated as a patient because of it. It's important that we all question the medicines and procedures they put us through to make sure we are getting the best possible care. I really hope they get you fixed up soon. <3
"Be ashamed to die until you have won some victory for humanity" ~ Horace Mann

craigy bhoy
New Member

Date Joined Jun 2009
Total Posts : 6
   Posted 10/27/2009 2:58 AM (GMT -7)   
hey misscris.i understand how your feeling.i was on pred for 10 mnths and weaned of them gradually while on inflixamab.last weekend i stopped them altogether and the next day my symptoms came back as bad as runnin to the loo all the on a few diff meds right now.asacol pred azathioprine and infused inflixamab.i no what you mean about ppl assuming you look like junkie or something.we feel bad enough without others assuming allsorts and pointing fingers etc.i hope you start to feel better should join its realy helpfull.loads of ppl like us who can help you trough your bad times.hope ive been of some help.craigybhoy x smilewinkgrin
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