A Little Rant about Prednisone

Background Info:

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…

My Story:

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!


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

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5 thoughts on “A Little Rant about Prednisone”

  1. I guess everybody has different experiences with prednisone – and it may also depend on how high a dose they start you with. I didn’t have any problem going from 5mg to 0, though I really only had mild side effects throughout my course. I do remember each week when I tapered down, I’d have a brief worsening of symptoms, but then it’d calm down again. So hopefully you’ll be ok finishing your taper – it is possible! :-)

    That was a couple years ago. For my current flare, which is less bad, I’m trying hydrocortisone enemas, which have not much systemic absorption and so few side effects. Maybe in case you do get into trouble after you finish your taper you could ask your doctor about the enemas?

    1. @HopSkotch – thanks for the comment :) I’m hoping nothing will go wrong with the tapering anyway, but your comment has reassured me that it’ll be ok, especially because i’m also getting a worsening of symptoms each week when I taper!

      about the enemas, I was told that they’d have little to no effect on treating a flare for me, because I have pancolitis, so my entire colon is affected by the disease.

    1. @William

      I don’t really know, apparently some doctor did research into links between Autism, IBD and the MMR and was stricken off and given a lot of trouble for it, because he did colonoscopies on children with autism who weren’t diagnosed with IBD and had no need for the tests to be done.

  2. I’ve just come off Prednisone after one year, starting at 40mg and only just recently tapering off to zero. My weight went up to over 210lbs from where I first started at an underweight 147lbs, I’m 6ft tall. Yep I had all the Prednisone side effects to start with including the unpleasant one’s, insomnia, sweating, the increased weigh up to what would now be classed as obese but even so within a short period the drugs did start to reduce some of the worst effects of the disease. I was also and continue to take Mezavant XL which I have been told I will have to take for the rest of my life. There are other drugs as well but not necessarily directly connected to the condition, more of a result of it, depression and chest pain i.e. anxiety, although even that I have now learnt to control with positive thinking. I have been unable to work throughout this whole period because of the pain and fatigue which only began to subside after about 9 months. I lost my job and my doctor was not too keen for me to return to work until we were sure the UC and crohns had settled down, which I’m glad to say it now has apart from daily stomach pain and frequent visits to the toilet. I’ll say to you what my doctor frequently says to me ‘keep taking the drugs’ things will get better.

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