Prednisolone for ulcerative colitis

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I have been on prednisolone for my Uc flare for 8 weeks. Started on 30mg tapered off then went back up. Now week 8 I'm on 10mg. The prednisolone seem to be worse than the flare up. Still have blood in morning.

But I can't sleep have headache jaw and toothache. Feel anxious nervous,asleep in the head but full of energy. Been off work for 5 weeks,2 were scheduled holidays. Does anybody else get these side affects,is there an alternative medication?

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15 Replies

  • Posted

    Hi michael89931,

    I can sympathise with you completely, they used to start me on 40mg and then taper down week by week. I used to get really manic, no sleep, headache. The jaw and toothache I've never had though.

    It might be that you need to taper every 2 weeks or something?

    Because of this the perscribed me clipper, another type of steriods but one that works in the colon only. The only thing is its expensive so not perscribed routinely. Although, even this didn't stop my bleeding but you could request it and use it with an emema. I've now been given another type of steriod; budesonide. But still this isn't working, I've been in this flare since May!

    I hope you get some relief soon. ?

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  • Posted

    Sounds familiar to me Michael. The first time I had a 40mg decreasing dose of Prednisolone I was like a Zombie from another world. This course helped my UC to a limited extent, the second course did not. I'm unsure if there are other Steroids or an alternative available. Good luck.

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  • Posted

    Thanks for the replies, nice to know i'm not alone with this.

    Just come back from hospital, where they have advised I go back on 20mg until they can sort out an alternative. Looks like its a long haul.!!

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    • Posted

      Hi Michael

      I was the same pred /steroids are okay if they work but when they don't and side affects are the worst mine was achy body no sleep night sweats hair loss bloated face like I said if it works then great.. in the end i had surgery and that I have no regrets if someone said a life time of all those meds I would of had surgery a lot faster and I still vow to that if I ever had to back on them my illestomy isn't permanent and will have it reversed in time but I would say like with a Stoma is 1000 times easy than being on those meds you aren't alone and we are here to support good luck maybe see if you can get natural remedies to put back in to your body what the steroids takes out if that makes sense.. Keep us posted 😉

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    • Posted

      Hi all,

      I'm now into week 2 in hospital, been on 400mg hydrocortisone for 5 days,that hasn't worked. Also on masolizin enema,and started on Azathioprine.

      Starting ciclosporin today,see if that clears the flare. Also speaking to the surgeon for the next phase. Feeling a good feeling about having the op and a bag,no more drugs get on with life,but just have obvious concerns about, accidents,smell,outdoor activities.

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    • Posted

      Hi Michael

      Sorry to hear you are in hospital but being this ill it's the best place to be .. sounds similar to me nothing was working but look you have to try .. as for odours for at first I was paranoid but you can't smell anything only when you empty and there are loads of tips I can give if you do have the op.. outdoor sports well you can do pretty much anything I have started to run again and swimming and being able to dive again was great to do this year!

      Accidents well everyone is different I've had a few close calls but I think if you are observant you will be fine it's like everything practise makes perfect changing my bag the first time with my Stoma nurse I nearly fainted because it's quite alienated ...this stoma on your tummy but now it's like second nature and done under 5 mins now it's strange as it fascinates me how it works still for me when I look at it call it gross , not pretty or for me it's my friend that gave me my life back so for that I put things into perspective.. you will get your up and down days and more to begin with after the op but soon after you will have more good I hope you are okay and here if you want to chat take care and keep us posted x

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