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25 newly diagnosed. Steroid worries?? Stressed. Azothioprine

Posted , 4 users are following.

elaine01002
elaine01002

I fell ill last summer and after being hospitalised was told I had both UC and coeliac disease. The coeliac disease I'm managing well but the UC not so much. I was on prednisolone for months after being discharged last year and only 5 months after coming off them last month I was re-admitted to hospital with a very sudden severe flare up and I'm now on the steroids again. I started on mesalazine last year and I have now also been put on azothioprine for long term maintenance.

Being on the steroids scares the hell out of me I'm swollen and moody and I know they affect bone density which I've already got to be wary of due to the coeliac disease. The azothioprine side affects look horrendous. Im due to start nurse training in September but it just doesn't seem realistic with these drugs I'm on but I can't let my disease trample my dream.

How have others found azothioprine does it really manage the flare ups or do people really suffer with the side affects?

I've been reading up about alternative holistic theropies but they all just seem contradictive and quite confusing, any advice/recommendations?

I know there's no specific question here but general advice/support would be much appreciated. My family try their best but they don't understand and i don't currently have a parter to turn to. I don't know anyone else that suffers from any form of IBD and talking to someone that just 'gets it' would be fantastic.

0 likes, 7 replies

7 Replies

  • charlotte44370
    charlotte44370 elaine01002

    Posted

    Hi Elaine. I have only just been diagnosed with UC last week, i am also on prednisolone and mesalazine. Finding it difficult to get over my current flare up and trying to figure out what foods (if any) make it worse. So far i have discovered that onions do not agree with me and also greasy foods. I understand how difficult it must be for you especially with ceoliac too. Try quite plain and simple foods (i know thisis had as its so boring!). I feel slightly down due to the fact that i will be on steriods for months to come and mesalazine for the rest of my life and im only 19. Hope this makes you feel a little better. 
    • elaine01002
      elaine01002 charlotte44370

      Posted

      Hi Charlotte. Wow even newer for you than me then. It's a bit of a mind field isn't it. I spent the 1st year just on mesalazine and actually didn't get any side effects from them, so fingers crossed they'll keep you under control. Unforfunately for me though it wasn't enough and it's these new ones that worry me. I've managed to sort out a dietitian appointment it's mainly for my coeliacs but I'm told she can give me advise on what to eat when's colour is flaring then what to eat when in remission. My appointments on June 4th so if she gives me any good tips I'll let you know. I tend to find anything with a skin on makes me struggle, I feel like I'm never eating anything healthy at the mo which isn't great when the steroids swell you up.
  • Nita777
    Nita777 elaine01002

    Posted

    I have Coeliac desease, UC and Crohn's (diagnosed different times). Don't worry too much about going on the aza, it works well with the mezalazine (I managed to get my life back and even had 'normal' bowels movements! Unfortunately I experience headaches and general nausea, I was prepared to put up with these but my blood tests (required every 2 weeks when I first started the aza for 8 weeks) started to show high LFT levels and I was told to stop taking it. I'm now waiting to go on to Mercaptopurine once my bloods return to normal.

    Talk to you IBD nurse or consultant about your fears, but don't be afraid to give it a go - I felt the best I'd felt in ages and my UC manifested very similarly to yours.I'm trying to stay off the steroids but they do work.

    Start your training, don't let the desease get in your way, it's your life and sometimes you have to grab it back. Join supporting forums and benefit and get support where you can. All the very best of luck. Nita X

     

    • elaine01002
      elaine01002 Nita777

      Posted

      Hi Nita

      Thanks ever so much for the response. It's reassuring to know you were managing on the azothioprine and mesalazine. So far no side effects I'm having bloods every week for 6 weeks I think, so far I've had 2 and so far so good. I've been booked in for a bone density scan on Friday so hoping that'll put my mind at ease about my bones.

      I really hope you get on ok with the mercaptopurine, that's what I've been told I'd go on to if the azothioprine doesn't agree with me. Any recommendations about what to and what not to eat when flaring?

      Take care Elaine x

    • Nita777
      Nita777 elaine01002

      Posted

      I have ceoliac desease so I stay well away from wheat gluten and gluten products any way, I've heard many peoplestay with blandfoods such as eggs and rice, stay away from onion and peppers and when really bad stay off salad items and fruit too. I try to eat as many 'bung up' foodsas possible and drink only water. It's a pain this desease and can be a struggle to stay sane ( I often suffer from steroid tourrettes abd general swearing)!!! confused Good luck. XX
  • patriciab
    patriciab elaine01002

    Posted

    hi elaine ive been on azothioprine for the past `10mths with no side affects, im also on loads of other meds too to name a few  mesalazine

    azathiioprine mebeverine and just finishing a streoids preddnisone only thing i fine is i get very tired ,, i have ulcerative colitis and had a loop ileostomy two years ago now the surgeon wants to remove my colon and bowel was asking people if they have or know of anyone that has had it done etc hope your feelig better soon xx

    • elaine01002
      elaine01002 patriciab

      Posted

      Hi

      Been on the aza 4 wks now no side affects yet but they're planning to up my dosage. Surgery a not been mentioned to me yet, I don't know anyone who's had that surgery. Hope you can find some good advice on here an if it does goes ahead all goes well. 

      Elaine x

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