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Azathioprine worries!

Posted , 27 users are following.

Skydriver
Skydriver

Hello! I was recently admitted to hospital after visiting my GP with persistant stomach pain (about 2 months on and off) and to cut a long story short, a CT scan showed an inflamed bowel which I was told was most likely down to Crohns diesese. I ened up having a small section of bowel removed by the surgeon, and am now back to normal - e.g. no pain or discomfort what so ever, eating and drinking normally, normal bowel movements... in fact you'd never know I had been ill! 

Now on a follow up at the hospital I have been prescribed Azathioprine tablets. I was given a 30 minute pep-talk by a pharmacist explaining the drug, which if I'm honest terrified me. Risk of cancer, nausea, feeling unwell, reduced bone marrow etc... In fact, lots of very unpleasant side effects. Basically, I feel great right now; 100%, and it sounds like these tablets will make me feel 'not great.' I want to talk to the consultant before I start taking them, but cant get appt until April.

From reading posts on the forum, and some general research, it sounds like Azathioprine is used to control inflamation during flare ups, or treat chronic Crohns that is affecting quality of life? Yet I have no symptoms, no pain or discomfort, and feel great. I appreciate that Azathioprine can also be used to prevent Crohns from coming back again, but with all the associated risks, and I gather you can only take it for a total of around five years before it stops working, is now the right time for me to be starting this drug? Should it not be held in reserve in case I have problems in the future?

Yes, I will be guided by my doctor, but until I can get to see him, I just wanted to get some feedback from anyone else on here using Azathioprine. Has anyone been in my position and started taking it? Sorry if I sound like an idiot - I'm feeling very confused and a little concerned about this drug. Do I really want to take something that will make me feel worse than I do now, and possibly even give me cancer? Any feedback greatfully received!   

3 likes, 42 replies

42 Replies

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  • helen96579
    helen96579 Skydriver

    Posted

    Re the Crohns I have an autoimmune conditions which is what Crohns is-and there as many autoimmune diseases as you want to find, ranging from thyroid diabeties, tinnitis, autoimmune hepatitis, lupus and more- and have just read a book by an American Doctor. In this book he claims that all autoimmune diseases start in the gut, and this is because of WHEAT.

    Now this sounds a bit strange as we are told to eat grains, but the modern varieties of wheat, that are hybridiized and following on, now have double the chromosones and sometimes are GMO as well, but the wheat product itself sbear no resemblance to the original grain. Our bodies can't tolerate it and the lining in the gut is affected and becomes porus and certain properties escape into the bloodstream.which in turn affects our organs and immune system that starts a cycle where we start attacking our own organs.

    It appears that everyone assumed the modern grains, (that are grown for fuller heads, high gluten, and on shorter stalks,) as they appeared the same as the old wheat, were the same, and were not tested on humans. 

    This book is well documented, has lots of references and is peer reviewed.

    I don't know if this is any help to anyone out there, but it is an interesting read, and I got my copy from Amazon for about $20- I live in Oz.

    I have stopped eating any bread made from wheat flour.  This is more than being gluten free, and I haven't missed it and have lost weight and feel good, apart from having to take the disgusting AZT as well.

    I think we have to do our own research and find a good naturopath as well to work alongside the Drs.  

    I am comfortable sharing this  info on a public forum (as I've just read the disclaimer!)as the more we know the better informed we are and can make our own decisions wisely.

    I have read a lot more stuff too about autoimmune diseases, go on line and check  them all uut, there is a common thread, there must be or we wouldn't all be taking thes horrible medications, that make us feel like we've been poisoned. 

    Emis Moderator comment: I have removed product/company names as we do not allow repeated posting of these in the forums. If users wish to exchange these details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

  • adelelisa1981
    adelelisa1981 Skydriver

    Posted

    Hi...

    I'm absolutely petrified at the thought of taking this medication... There are so many side affects and I don't want to get more diseases through treating crohns disease... The thought of getting cancer makes me feel sick... I have two little boys that need their mummy.

    My crohns is active as my sample inflammation levels came back at 458 but I am symptom free and feel 100%

    How does anyone else feel on this medication? I'm due to start it soon but feeling rather doubtful.

    Help please x

  • helen96579
    helen96579 Skydriver

    Posted

    Hi everyone, Please try and find the info I wrote in a previous blog about the wheat and grain book. Also look up the Rosedale diet, which is a rather severe diet for autoimmune diseases, but ifyou follow all the links to this info you might find they work.  I can't name people or book titles in these blogs (don't know why as it should be an open forum, its not as if we are peddling snake oil!) , but I know of cases that have had chrones reversed.  In Australia we have  the Australian College of Nutritional and Enviromental medicine, which provides a course that some docs and health professionals can do and then they go out on their own and are really very good doctors with an interest in nutrition.  They claim that all autoimmune diseases start in the gut. So  PLEASE try and look some of this info up.
    • adelelisa1981
      adelelisa1981 helen96579

      Posted

      Crohns reversal sounds amazing, thanks Helen, I will definitely look into this diet xx
    • sharon555
      sharon555 helen96579

      Posted

      I have read information concerning the gut being the cause of much of these autoimmune diseases. I was first diagnosed with Auto-immune Hepatitis in June, 2016. Up to this time I had never been hospitalized before (I'm 64), never taken anything stronger than Ibuprofen (and very rarely even that) while also eating a mostly healthy diet. I went through an extremely stressful time in 2015 which drastically altered my life. The thought of being on Prednisone and Azathioprine does scare me even though I'm sure the Prednisone (60mg daily) saved my life initially. My liver enzyme levels were almost up to 2000 and my Bilirubin 20. I was put on the Azathioprine about a month later at 50mg daily. My Pred level had gone down to 5mg daily in early November; toward the end of November I was called by my doctor and told to increase the Pred back up to 10mg. Instead of doing so, I decided to stay at 5mg daily and cut my Aza dosage in half as well. When I went for my 6-month visit two days ago with my liver specialist doctor I discovered that my bloodtest in early January showed my enzyme level had started increasing to the 500 and 600 range. During the month of December when I had decided to take the lower dosage of the meds, I was also being super strict with my diet - no gluten, dairy, sugar, soy and eating foods that do not cause inflammation, but I was feeling terrible so decided to go ahead and take the 10mg of Pred and 50 of Aza. Before I saw the liver specialist I had another bloodtest in first week of February and my enzyme levels were down to 80s and 90s. I have now been told to continue the 10mg of Pred and increase the Aza to 100mg, although she was willing to let me increase it to 75mg first for a few weeks. This is all so frustrating to me. I don't want to experience the long-term side effects that can develop from taking Azathioprine. I hate the idea of taking an immune suppressant. It goes against everything I believe in. I just hope at some point I can get completely off these drugs. I already have the rash, easy bleeding from minor scrapes on my arms and hair loss. I plan on sticking with the prescribed dosages for now but I am trying to learn how to better handle stress, continuing with my healthy diet and beneficial vitamin supplements. I wish I could afford to see a functional doctor who might suggest other more naturapathic remedies. I lost one of my better paying gardening jobs in November and insurance doesn't cover homeopathy, acupuncture or other more naturapathic remedies so for now I guess I will continue on this path. I welcome any suggestions.

    • linda93536
      linda93536 sharon555

      Posted

      Sharon, hi. I thought I was reading about myself when I read your comments. It's pretty lonely out here and refreshing to meet someone who has the same issues. I would love to talk if you are comfortable.

    • royalty
      royalty sharon555

      Posted

      Hi sharon how are you doing. I have autoimmune hepititis on pred an aza I'm trying desperately to lose weight having been on steriods for ten years. I'm on maintenance foes now have been for few years I'd love to come off these awful drugs having got warts on hands awful hair loss wondering how you are doinf

    • nidia53744
      nidia53744 linda93536

      Posted

      I have your same problem. Contact me anytime.  This is awful. 
  • Skydriver
    Skydriver

    Posted

    Hey all, Apologies for my absence on this topic, but not really much to report. However, I started taking the Azathioprine tablets last Sunday! eek  Only the 'test' 50mg daily dose, but so far I have had no problems at all. I have felt a little more tired than usual, but apparently I am low on Iron which could be what's causing that.

    My Dr made a fairly convincing case for taking the tablets, saying there was a good chance that my Crohns would come back if I didn't; plus the tablets would reduce my chances of getting bowel cancer, and they should greatly eliminate the chance of having more surgery in the future.

    The daily dose increases to 150mg in a week's time, so that is the next hurdle to get over. I'll keep you posted.

    Adelelisa1981, go speak to your Gastro doctor or IBD nurse about your worries. I wrote down a list of questions and went through them all and it certainly helped. I was told I was more likely to get cancer from the Crohns if left untreated.  

  • benjamin71619
    benjamin71619 Skydriver

    Posted

    Skydriver, are you still taking the medicine?
    • Skydriver
      Skydriver benjamin71619

      Posted

      Hi Benjamin, yes I am still taking the Aza. Thankfully no serious problems to report. initially I was on 150mg, but increased in October to 175mg per day. Only real issue is that since the increase, I have developed unsightly acne type spots on my shoulders and upper legs. Consultant says I will be on them for 10 years or more...
    • benjamin71619
      benjamin71619 Skydriver

      Posted

      Hi Skydriver,

      After taking this medicine, is there improvement in your stool?

      Mine is still not solid and are always in loose form.

      Also, I feel very tired easily.

  • kelaimee
    kelaimee Skydriver

    Posted

    Definitely not an idiot. I was diagnosed with crohns 10 years ago. Luckily mine was mild so have been on mesalazine. However the last 2 years my condition has got worse and I've been in constant pain and more flare ups. Last year my consultant advised me that I would need to start azathioprine because I have several strictures and mesalazine is not helping those. I was given the talk about the side effects and told to think it through. Then I went home and looked it up on the Internet. Big mistake! I was petrified. Why were they giving me this drug if it can cause all these horrible things. After all I couldn't get worse because I have a young child to look after and work. After months and months of going back to see consultant, ct scans, ultrasounds, mri scans, talking to people on here, at home and work, I finally said to consultant to proceed. After all it was either this or surgery. And I don't really want to start down that route. Three weeks ago I started taking azathioprine. I have felt very tired, aches, nausea. I've had a few days off work because of it but I'm looking long term. I've had my first 2 week blood test and haven't heard anything bad back from that so hoping that all is well with the medication. They do keep a very close eye on you when you start this drug and I've Ben told to phone or go back if ever I feel unwell. Obviously everyone is different and everyone tolerates pain differently. I was getting to the point where the pain was unbearable and I have a high pain threshold. My daughter was suffering because I was getting ratty and couldn't do Things with her, and my relationship was getting bit strained because of it. I'm hoping that the azathioprine will control the pain and give me back some freedom to do stuff. Of course I worry about what the negative side of the drugs. The amount of times I've cried about potentially not being around for my daughter because of these drugs, well I've lost count. But I have to live in the now and give her the mum back that she deserves and needs. If that means Feeling a bit crappy for a few weeks then so be it.

    Talk it through with your consultant your family. Your work colleagues. And keep doing it until you feel comfortable with the decision. I hope it all works out for you

    • Skydriver
      Skydriver kelaimee

      Posted

      Kelaimee, I completely understand what you are saying. For what it's worth, I have been on the Azathioprine for about a year now and I have had nothing more than some fuzzy headaches for a few weeks (taking the tablets just before bed sorted that one!) and the spots (which thankfully are not on my face). It takes a good few months for any benefits to become apparent, so dont expect instant results. The regular blood tests are a bit of a drag, but thankfully I am up to the 3 monthly ones now. Yes, I still get the occasional cramping pains etc, but all tests (even a routine colonoscopy yesterday!) show I am still thankfully in remission. Stick with the Azathioprine unless you have any severe reactions and go and enjoy your life.   
  • louisesmith88
    louisesmith88 Skydriver

    Posted

    Hi, can anyone who has been on Azathioprine tell me if they stopped taking it successfully? What do you do if you are more unwell on it than you were before? Daily abdominal pain, anaemic but unable to tolerate iron tablets as they cause so much pain so ending up needing to be admitted to hospital every few months for a blood transfusion. Losing weight no matter what or how much you eat. This has been going on for almost the whole 3.5 years that the person has been taking Azathioprine but their consultant is very against coming off it. Would really like to get someone else's thoughts as I am not a sufferer myself but I want to help.
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