Posted , 4 users are following.

Hi guys ,

Its been a while since ive posted anything...

I seem to have a reaction to every medication I am proscribed to help with my crohns .... ive had insomnia from one steriod and massive moods swings that made me a horrid person to be around from another setriod... at the moment im on a steriod that doesnt seem to give me any side effects but also doesnt seem to be helping with my crohns symptoms.. so my consultant decided to team to steriod up with azathioprine... but I think im now having a reaction to that ... I have very severe back pain I can hardly walk, havent slept properly in about a week... most nights I am vomiting because of how much pain im in ... ive been to out of hours doctors, primary care abd also a&e and everyone has prescibed me different pain relief which none of them even seem to touch it ... last night I read that a side effect of azathioprine is muscle pain and spasams so im wondering if this could be where my back pain is coming from and why none of the pain relief is helping me ... I have rang my ibd nurses twice now and haven't had a call back as of yet ... so I was just wondering if anyone else has experienced anything like this or if anyone has any advice ... thanks in advance x

0 likes, 4 replies

Report / Delete

4 Replies

  • Posted

    I was on aza for a few weeks, if it's the small yellow pill (taken once a week?) I was almost admitted to hospital with pancreatitis... Needless to say I'm not longer on it
    Report / Delete Reply
  • Posted

    Hi nefni,

    I've been living with Crohns for over 40 years and have had long periods of remission plus intermittent flares ups. I've had two resections and am waiting for my third. I'm currently on Azathioprine (150 mg daily). How long have you been taking it? It's not a fast acting drug it takes a while (weeks) to get into the system, thta's probably why your Dr's keeping you on the seteroids until it kicks in. It can cause a range of side effects but your GP should be monitoring that - I have reguar blood tests to watch out for any 'nasties'. I think the main concerns are around damage to the liver and pancreas, dont know about back pain! I've had no problems with it, it works well for me. Think you definately need to go back to your Dr. Sorry!

    Report / Delete Reply
    • Posted

      Hey I have since been taken pff the azathioprine as it seized all my back muscles up and stop me from getting out of bed ... I went to my drs and 2 a&e's trying to stop the pain and they just loaded me up on many many different tablets saying that I must have damaged my back at work or at home ... when I finally got to see my consultant he said straight away I has to get off the azathioprine and that all the tablets every other dr had given me was what was making my crohns systems worse ... I am now just on steriods which help slightly and have got to wait a month before I can start with the injection treatment (cant remember the name of it) I do see the point in going to my gp or any hospitals about anything to do with crohns because they either wont treat me because of it or just completely ignore it... very very frustrating
      Report / Delete Reply
  • Posted

    Hi, I'm sorry to hear how much you are suffering and also to add that my elderly mother has experienced a lot of the same. She lives with me now and it's hard to see her trying to live with severe Crohns. What you describe resonated with me as my mum is in a similar position. She was diagnosed with Crohns a few years ago after a lot of mis diagnosis and failed treatment attempts whilst all the time getting sicker and sicker. When it was finally established she had Crohns she was put on Azathioprine and this made her sicker and the flare ups worse than ever with severe pains. She suffered from a lot of joint pain and general issues, she was constantly told it was nothing to do with the meds but just her age! After suffering for a year we eventually insisted she be taken off Azathiprine. I had done some research and heard of a new drug TNF-alpha that has had positive results. We asked for this but the consultant refused. Since then mum has been managing the flare ups with steriods and been ignored by the clinic. When she has an appointment with the consultant they are clueless and just fob her off with no real answers or support. It's soul destroying for her and for me to sit by and watch helplessly. Her flare ups are getting worse again and she takes steriods every few weeks which is worrying as I know this not a long term solution. But we have no idea what to do as no one is listenning in the NHS. GP have no idea about Crohns and the consultants don't appear to care or understand that every patient is different. I wanted to sympathize with you as a lot of what you describe nefni is what I have seen my mother go through, it's awful. I hope you get some answers and if you do keep us posted as it would help to understand what treatments are available and where to go to receive them etc. You description of your symptoms and side effects are very helpful to know as it confirms to my mum that she is not 'making it up' and it is real and should be taken notice of. Good luck, I hope things improve for you x
    Report / Delete Reply

Join this discussion or start a new one?

New discussion Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up