I’m Jamie, I’m 17 and from Ireland. I was diagnosed with Ulcerative Colitis on September 6th 2011, though my first major flare started in late January 2011, but I wasn’t hospitalized (apart from a trip to the emergency room on June 7th) until September 6th, that’s when the crapstorm began…
It’s been about 2 weeks now since I last posted, so I thought I’d just make this post for myself more than anything so don’t mind some my silly ramblings..
I’ve realised quite quickly that although prednisone is my best friend, it is also my mortal enemy.
Seriously, the amount of side effects to one drug, how is it even FDA approved?!
So far in the full time I’ve been on prednisone (just over 3 weeks) I’ve gained 10kg (22 pounds for you americanos and 1.5 stone for us metric system users!) and got some serious moonface!
Also, I’ve been sweating buckets, even when it’s really cold (which is all the time, because I live in Ireland!) and can’t shower because if I stand up for more than 2 minutes, my knee gives in with a really sharp pain that doesn’t go away until I sit down, so bathtime all the way for me!
ON THE PLUS SIDE…
The doctors are happy with my progress, they’re worried about some of my obs, which they can’t check at the moment because i’ve got a really bad fear of needles, which was extremely exasterbated when I went to get blood tests and the stupid intern failed to get blood after 4 attempts (after every phlebotomist in the hospital telling me I had amazing veins!) so I feel too afraid to get them done again (yes, I know this sounds stupid, but let’s be honest, we all have irrational fears!)
On a completely unrelated note, the hospital that I’m attending are sending me to see a shrink for an evaluation on Tuesday to see if I have Asperger’s Syndrome, which is a type of Autism.. Isn’t there supposed to be some sort of link between Autism and Inflammatory Bowel Disease?
This is the one thing about Ulcerative Colitis that I haven’t been able to accept, that they can’t tell me why I have it! Hopefully I’m not the only person who’s going through this frustration.
anyway… where was I?
Oh yeah! Prednisone!
I’m currently on 30mg a day, tappering down by 5mg a week, hopefully stopping straight from 5mg to cold turkey (which has apparently been hard for some people?) and then hopefully maintaining remission with 1 gram of Pentasa (mesalazine) 3 times daily, but I’m thinking of changing my medication to Salofalk, because it’s 3 grams once a day, so i’d only have to take it once in the morning and then forget about it! has anyone been on this or know anything about it? let me know.
So for now, Prednisone is keeping my UC in check and hopefully putting it in remission, everything is returning to normal, so that’s a good sign, right? So for now I can deal with the moonface, night sweats, joint pain, hair loss, fluid retention, truncal weight gain, acne, frequent urination and fatigue as long as in the mean time, it keeps me from running to the toilet 20 times a day!
Submitted by Jaime in the Colitis Venting Area
Here are some related stories about prednisone:
All of the posts from “Annonymous UC” are from ulcerative colitis people who anonymously submitted stories or Doctor Reviews, medication, supplement reviews etc… I post all these stories to the site, but they’re different from my own personal stories so hopefully this account makes more sense:) -Adam – founder of iHaveUC.com