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Has anyone had success with azathioprine?

Posted , 11 users are following.

janet02921
janet02921

Was diagnosed with ulceractive colitis in December 2014 following severe food poisoning from a restaurant meal.  Have been taken off the pentassa range of meds due to a severe allergice reaction.  Have been told by my clinic that the only alternative is azathioprine with is an old chemotherapy drug with all the associated side effects.  Have done my research and the success rate is very low and patients are usually sick, etc.  Has anybody had a good outcome with this drug and, if so, do you feel well?  Many thanks for any input.

0 likes, 16 replies

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  • brightside2016
    brightside2016 janet02921

    Posted

    hi, I think it was this or the salofalck that made my joints very achey and made me feel like an 80 year old woman (Im not!), this drug had no affect on helping my symptoms - but hey everyone is different and I think it depends if you are already in remission or not. I wasnt and these were useless for me.  

     

    • janet02921
      janet02921 brightside2016

      Posted

      Thank you Carly for your kind and quick reply.  I have got a clinic appointment on the 24 Feb and Ihave got to make my mind up by then.
  • bustergut1
    bustergut1 janet02921

    Posted

    Hi janet02921

    I am 59yr old female.

    I have ulcerative colitis diagnosed Aug 2013.

    Been on various dosage levels of steroids since then & am now coming off steroids hopefully for good.

    I've tried pentasa, humira, infliximab, azathioprine, azathioprine+ allopurinol. Now I am on vedolizumab which works by blocking the white blood cells that target the bowel. So far, so good. Your question was has anyone tried azathioprine?

    It did Not suit me. As with all meds you will need regular blood tests. I did not feel very well on azathioprine & blood tests confirmed toxicity. Everyone of course is different. Have you been offered vedolizumab? 3 infusions over a few weeks then infusions of half an hour every 8 weeks. I was facing surgery last June & this has thrown me a surgery saving life line. Fingers crossed!

    • janet02921
      janet02921 bustergut1

      Posted

      Thank you Buster for your reply.  Sometimes I feel like a guinea pig when they say try this or try that.  I have not heard of vedolizumab or seen it mentioned anywhere.  It seems to me that not people do get on with azathioprine and perhaps the clinics are pushing it because it is the cheaper option.  Glad to hear that you are doing well and you will be able to avoid surgery for a long time to come.
  • susan22387
    susan22387 janet02921

    Posted

    My daughter , 17 years old had UC diagnosed Dec2014, and started Azathoprine in September 2015 as steroids were short term effective but the Uc symptoms returned when she finished the course. Mesazavant meds were also used before this but didnt work effectively with the steriods either. Our consultant therefore with discussion, trialled her on azathoprine, initially on 25 mg and then built up every 25mg every fortnight until she got to 150mg. She did have few days of nausea and has been sick once or once as the drug increased every fornight but it seems to pass after a few days- she also splits the dose so takes 50mg after food three times a day to help diminish the side effects. She had side effects from the steriods and still takes the mezavant and has some hair loss as a side effect from this but its benefit seems to outweigh the  negative bit of UC.Her repeat sigmiodoscopy last week showed things were looking much better and we are now staying on the meds long term. Luckily  blood tests show her liver function tesst are good and her body is tolerating it well. So for us the use of the drug has been advantangous and the next step would have been iv infusions of imuran which has even more side effects and hospital visits. Our gp surgery did the bloods weekly for her so that was much easier than going to the hospital, and the consultant saw her fornightly over the time he triated the drug up to 150mg. Hope this helps.
    • janet02921
      janet02921 susan22387

      Posted

      Hello Susan.  Many thanks for your reply and I was pleased to read your daughter is doing well and it has given me some hope.  Best wishes for her continued improvement.
  • louisep
    louisep janet02921

    Posted

    Hi Janet

    In reply to your question, I am currently taking azathioprine and have been on it 2 1/2 months now. I was also very concerned about taking it, but after trying all other alternatives which either didn't work or had bad side effects, this was the next one on the list.

    Everyone is different, but for me I didn't notice any particular serious side effects. For the first 2 weeks I felt a bit fluey but that passed. I find I have a few muscle aches which I can't say are definitely due to the medication or just my age. I'm 48! I'm just experiencing my first virus since dtarting on it, so time will tell if I can recover quickly from it. I have noticed an increased sensitivity to sun light which could prove a bigger problem in the summer. I've had the rounds of blood tests which you'd have to go through, weekly to start with then fortnightly, monthly then 3 monthly. All mine have been fine so far.

    I was almost in remission by the time I started taking this one so only time will tell whether it keeps me in remission long term. I hope so as the next step are biologicals or surgery or just put up with the disease.

    Good luck i wish you all the best and I hope I've been able to give you a little more information about this drug.

    • janet02921
      janet02921 louisep

      Posted

      Hello Louise.  Many grateful thanks for your positive reply.  Everyone who says they are doing well on the drug gives me some hope. Just wish my consultant would, instead of saying I will be sick and he can give me another tablet for that.  Best wishes for your continued good health.
  • ehsan18513
    ehsan18513 janet02921

    Posted

    Helo Janet

       This is very interesting. Damage caused by food poisoning started the UC. I have been on this issue for several months now but not many have been responding. I had sever proctitis for 1.5 years with usual toilet breaks and loss of blood, until I decided to try remedial food therapy last April. I stopped gluten for around 4-5 weeks replacing with rice noodles and gluten free diet. Also cut down on hot, spicy food and AlcoholProctits disappeared and I am back to normal. I think remedial food therapy to help restore the colon back to normal may take time but is better alternative to long term use of drugs.

    Cheers

     

  • ehsan18513
    ehsan18513 janet02921

    Posted

    Just to emphasize food therapy may not work for everyone, or sever cases, and may not replace use of drugs.
  • tony33900
    tony33900 janet02921

    Posted

    I tried it when I was first diagnosed 9 years ago it didn't suit me at all. I could sleep for twelve hours and feel like I'd only had twenty minutes sleep. Just walking from the kitchen to my living room exhuasted me and I felt awful all the time, I just couldn't function at all. As others have said it's all personal so it doesn't mean it won't work for you.
  • Fluffe
    Fluffe janet02921

    Posted

    Hi Janet... I was diagnosed with colitis (they think) from food poisoning after heavy antibiotics in August 2015.  Initially put on octasa (apparently some find it hard to get along with) then with also pentasa suppositories I reacted. The ibd nurse took it into her hands to dismiss everything I said and did not pass on to the consultant...I was gaining weight like crazy... Rashes, trouble breathing... In the end I stayed on the pentasa that acted like a bandaid and only stopped bleeding briefly....as I reacted badly to the octasa and pred foam caused me to bleed like nothing on earth..  Now after having to rush to the hospital for what turned out to be a severe diverticulitis attack ( which was Never discussed) I was told that the reason that I had not responded was because of the circumstances leading to the possible colitis/ colitis like reaction.  Is it possible to get a second opinion... My second opinion was a post infectious change.... I also put the circumstances leading up to it in writing so now the hospital is taking it more seriously..... CTscan Wednesday and possible sigmoidoscopy the following Monday. 

    I know it's not exactly what you asked.... But if this helps in just the slightest of ways.....

    take care

    Val

    • janet02921
      janet02921 Fluffe

      Posted

      Hello Fluffe.  Thank you for your kind reply.  You had food poisioning too and then diagnosed with colitis, just like me.  Hope all goes well wth your CT scan and sigmoidoscopy and you get a definite diagnosis this time which can be treated successfully.

      Best wishes.

    • Fluffe
      Fluffe janet02921

      Posted

      Hi Janet... Yup though what I am learning is one treatment doesn't seem to fit all.  I did have a very bad reaction to octasa but managed to tolerate the pentasa with no real 'healing' effect and reacted very badly to the pred foam.  I learnt from an unrelated op that I had a severe life threatening allergy to beta blocker... What kind, I'm unsure... But I attribute the food poisoning to all these problems. I now wish I'd gone straight to the hospital when I came home from holiday. If it weren't for getting a second opinion and then putting it in writing about my symptoms, history leading up to this and what the other specialist said about their report et al am I now finally being heard. I did have prior history of IBS and said too don't attribute my body's reaction to that.  The moment I stopped the octasa the weight evened out and has now started to drop (intentionally!) and the rash went away.  I'll let you know how I get along if you'd like ☺️ though it may be something to think about about setting out the timeline and what happened plus your concerns in writing to your specialist 🙂 That way the entire set of events are there for them to be aware of. 
  • samantha1982
    samantha1982 janet02921

    Posted

    I've been on Mercaptopurine for 3 months and it's working in the sense im not getting colitis symptoms even after being off Steriods since January but I feel sick and tired all the time and now I've noticed my hair is falling out and I get random anxiety panic attacks and heavy chest palpitations which docs don't know if it's a side effect or part of the anxiety I now randomly have

    .

    I am so sick of feeling sick but as its controlling flare ups I'm too scared to risk switching medication but the fact this stuff is so toxic and increases risk of cancer etc I don't know if it's worth it anymore.

    Like you I co stab you worry whether this drug is worth the risks involved but it is working for me but I seem to be getting every side effect known to man and it's slowly driving me crazy cause I just want to feel normal not like some panicky old flake

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