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Azathioprine opinions experiences and risks

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cyberfruits
cyberfruits

Hi

I have been on MEZAVANT and humira weekly injections which have not been completely working.

My new gastroenterologist has now put me on azathioprine 100mg .

My question is what are your experiences and opinions of aza and the side affects, is this just a lot of scaremongering as the benefits out way the side affects?

with regard to the side affects surely the blood test frequency would detects problems and then one can deal with them?

Would blood test detect Lymphoma or the other cancers, so one can act before it is to late?

Experience opinions greatly appreciated to put my mind at rest. i am in a corner at the moment going (running)to the toilet 25 times plus in a 24 hour period and heavy bleeding with pain etc.

Steroids caused cataract so no good.

Thanks

0 likes, 6 replies

6 Replies

  • Fluffe
    Fluffe cyberfruits

    Posted

    Hi Cyberfruits... I've been on Aza for over two years.... no side effects though everyone is different. For me it's been a godsend. I take 100 grams in the morning plus a 40 mg omerazapole with it amongst other little bits and pieces!

    I've  reacted badly to octassa and the UC spread (rapid weight gain without eating much and bad skin rash while still bleeding and running back and forth to the great white god) - I reacted badly to sullasalazine where I had rolling chills, skin rash and felt that if you stuck a pin in me, I'd blow up - these side effects happened within two days!!! - though I persevered for the first week and gained about 7 pounds - but nothing with the aza.  I can tolerate pentasa suppositories which I used when needed.  And you will probably have omerazapole for your tummy while you take aza... that just keeps the tummy protected from what I understand....

    I did have heavy bleeding beforehand and did have to have steroids and it didn't affect my vision and I was quite a high dose at the start when the bleeding got out of control- though I did have uveitis prior to 'coming down' with UC and had the gel rip behind my eye without warning (This was like nearly 6 years prior....)  The steroids got the bleeding under control after they got the bunged up stuff out and it seems when I'm bunged up, my flare will continually get worse - so I'm on senna and laxido at the moment as well... I have the occasional bit of blood but not the clots like I'd have before when I was backed up.  

    On a different  topic from the aza - Did the doc check to see if you were backed up?  Quick X-ray can determine that as if you're all inflamed, stuff might not be getting out the way it should despite all this running!!! (Been there and done that marathon too!) Maybe the nurse can arrange an Xray - I'd write and let her know your symptoms as she's supposed to be there to help you too or - I know at the moment the A&E is overworked but that's another option.  Go straight there if it becomes too much. 

    BTW I've got moderate/severe distal colitis, diverticulosis, IBS, with a few different 'kinds' of arthritis including the entropathic arthritis which is the colitis related one.... oh yer and the eye thing.

     

    • armelle88733
      armelle88733 Fluffe

      Posted

      Your email struck a chord. I feel in a similar situation. Diagnosed UC 2 years ago and on high dose of pentasa, salofalk enema. This is the 3rd time in a year I am on prednisolone. In December, I started aching everywhere particularly my elbow. I also have waterworks problems. No infection but a constant urge to pass water. My eyes are also bothering me with a feeling of pressure behind them. Eye specialist said nothing wrong. I feel shattered, weak and nauseous. I don’t suffer from diarrhoea thank goodness and according to gastro, my UC is mild so why do I feel so awful all the time? I think it’s time I started AZA. 
    • Fluffe
      Fluffe armelle88733

      Posted

      It might be worth asking for an Xray just to double check or a full GP MOT.  Maybe your GP can get an Xray for you if you can't see the specialist right away too.  I really can sympathise with you and I do hope you can get it all sorted. While Aza is not for everyone in that it seems all drugs affect everyone differently, a good chat with your specialist or even the IBD nurse if she's really good may help get the ball rolling in getting you feeling better...

      My specialist - who is fantastic - did say if there is inflammation, it could stop the bowel from working properly causing a back up.  I was originally mild but it progressed quite quickly because the original drugs didn't work.  I remember rolling in a ball and crying as I was in so much pain and there were a lot of problems getting it properly sorted from the start.  I do have some drug allergies or sensitivities.  I was on 8 octassa a day originally with the pentasa suppository but I reacted to the octassa.. same family as the pentasa but I can tolerate small doses as a suppository. 

      There is also something called entropathic arthritis - it's related to the UC.  It just accentuates all the osteo and rheum I have when the UC is acting up some and I've just started a lose dose mexotrexate as I had to have my aza reduced (some blood test with a spelling as long as the alphabet said I had plenty in my system) which brought it all back. Fingers crossed (and hopefully I can get them uncrossed once it works!) One thing is in the two really bad flares I did have, my CRP didn't spike and I've been told that that can happen in some people.. call me weird!!!  UC can also affect the eyes but one of my eye, the specialist could see low level inflammation in it.  

  • armelle88733
    armelle88733 cyberfruits

    Posted

    Thank you. I had a telephone consultation with my gp. No UTI. So why the pressure to go all the time. She upped my dose of sertraline from 50mg to 100mg. I take that for anxiety. So now I dint know whether I have anxiety or UC or both. 

    I also phoned the IBD nurse. I feel I know more than her about this disease. She asked me how many bowel movements I was having a day. Well, I don’t, i’ve Suffered from constipation mainly. Also she said it must be a UTI when I told her there was no infection. It’s like banging your head against a brick wall. Anyway, she will speak to gastro today and phone me back hopefully. She was supposed to do that last week. I despair.

    • Fluffe
      Fluffe armelle88733

      Posted

      That's hgreat news that there's no UTI.  Hmmm.. constipation... now that's something I can totally sympathise with.  I was put on two sennas in the morning and two laxidos in the evening.  (My evening beverage!).... if I don't, I don't go!  Yer.. I can understand why you're frustrated.  The IBD nurses ask those questions and mine didn't listen at the start either though if you don't hear, I suggest you call her if you don't hear.  I will email mine if I need something as that is now my record but since locking heads, she has been marginally better!!!!  I also made 3 trips to A&E within two and a half weeks which got things moving too on all fronts!!!!   I would imagine if you're anxious it makes the UC worse.  I know when I'm 'stressed' about stuff like work, I can feel the 'burn!'  My hubby suggested something to relax me like Tai Chi or Yoga or even something simple as doing a craft.  The craft thing does help and I wouldn't mind giving Tai Chi a go but Yoga... I think if I got into a pretzel shape, I'd need the jaws of life to straighten me back up again!  lol

    • armelle88733
      armelle88733 Fluffe

      Posted

      Well, my insistence with the IBD nurse paid off. She’s managed to give me an appointment with the gastro on February 6th.

      i am ok bowelwise . Tapering prednisolone. But why am I so very tired. I’ve increased sertraline to 75mg for a couple of weeks and then 100. Thank goodness I am off for a month after a laparoscopy last week. Sick and tired about being sick and tired. 

      I have always practised yoga but I have stopped for a year now. I don’t have the energy and bending into a pretzel is not going to happe. Iyangar yoga is the best. All ages and fifferent health issues. Highly recommended.

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