Azathioprine worries!

Posted , 27 users are following.

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

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  • Posted

    Hi I'm new this and it's good I found this as my partner has been diagnosed with crohns 2 month s agon and already they have put him on azathioprine from what I have seen have made him worse I have had to call the ambulance 2 timessage because of bad flare ups it horrific at the moment he says his stomach feels on fire and is struggling to walk his consultant had put it down to the flu . I belive this this s non sense it's the tablets . He was fine before he took them I just don't no what to do another visit to the gp I think.

  • Posted

    Hi, by December I'll be using 100mg Azathioprine for 5 years after a "severe" UC diagnosis. I was prescribed next to a short term Prednizolone. I had another colonoscopy following the 48th month to check whether my new symptoms were related to Imuran  or not. They were as a result of spastic colon and a rectal edema. Nothing negative related to Imuran usage was detected. 

    In this 5 year period, I have my childhood allergies back and cuts and bruises take a lot longer to heal...and in different colors I might add. Other than these two, I can not think of any side effects that I can relate to azathioprine. My doctor called it a "good match" in 2013.

  • Posted

    I've being taking Azathioprine for over three years now for autoimmune helatitis - prednisone initially for one year then tapered over to Azathioprine for long term treatment. 150mg.

    I have absolutely no reaction to Azathioprine, unlike the steroids which blew me up like a balloon and also caused severe mood swings. With Azathioprine I have my hepatitis under control and feel great. I have regular checks from a dermatologist and cover myself in sun cream when I'm in the sun (I live in the mountains and spend a lot of time outdoors) -provided I take those precautions I could happily continue to take Azathioprine for ever.

    Recently I've started to develop higher MCV (red blood cells getting bigger suggesting the bone marrow is being compromised), my blood pressure is too high and I have some blood in the urine, so there may be some long term side effects. I don't feel unwell though. I suspect my specialist will start to wean me off Azathioprine as a result, but not too fast as I can't afford to relapse with the hepatitis (would definitely need a transplant if I did). I'd rather live with the Azathioprine side effects.

  • Posted

    Hello I'm a 21 year old female diginsosed with UC in 2014 where they started me on mezavant 4, 120g tablets a day. 3 months later I was back in hospital with another flare. once the weening process of steroids stopped and the mezvant wasn't sufficient enough to keep my UC under control. I was admitted back in hospital with another lot of steroid they would inject into my fradgile body daily untill discharging me with another medication... azathioprione. I remember in hospital the lady in the bed next to me, her name was Dawn and she just had her breast removed due to cancer. Dawn had over heard the doctors explaining to me the benefits and the risks of this drugs, risks being leukaemia . At the time the doctors explained it time I was by myself and only 19, when the doctors left my room

    she pulled the curtin and I remember her so clearly saying "sweetie don't you even consider that, that is the best you have". and isn't she so right.... that this is the best option we get. Anyways, I left hospital and begin to take azathiroprine. As a 19 year old girl in my opinion I got the worst side effect of all..... hair loss. My think hair, thined so much my words right now will never be able to explain the extent of how much hair I lost, it was very hard to deal looking back I really don't know how I copped. fortunately this did slow down..... but the damage had been done. around 12 months later where I am right now (hair slowly returning) however I've recently started noticing changes in my body, I bruise like I have been beaten and my vision hasn't been all that good. Has anyone else had problems with their eyes? struggling to focus? Ive noticed I'm lossing weight again but the most alarming symptom is the bruising. Has anyone else has this/these problems? I'm starting to worry and will be seeing my specialist within the next few days.

    • Posted

      Hi, im nearly 21 and just started my Azathioprione treatment 3 weeks ago. The first week i felt awful, really sick but i started to take the tablets just before bed and that started to help. My body just ached constant and i was so so tired.

      All those symtoms have died down now but like you im starting with the hair loss 😩 My eyelashes are starting to fall out and on one eye i have only about half left, very devastated as they were lovely and long!

      I didnt really think about the eye situation being about the medication but recently my eyes have started to get worse, i had really good vision but now i can barely read number plates out the window at work and they are really sensitive!

      Hope you get sorted!

    • Posted

      Hi. Have you been to your specialist? What happened? If you are worrying too much you should ask your doctor about "escialopram". 

      I've never lost focused but bouts of pink eye effected my vision for a long time, until I've realized that it was due to "new" allergies because of weakened immune system. I use "ketotifen" drops when needed and it's gone. If bruising happens by itself it might be about your bone marrow. Please let us know how your doctor responded

    • Posted

      Hi, no i am now on Azathioprine, Budenofalk, pentasa, Iron Tablets, and Calcuium Carbonate tablets 
    • Posted

      My GI discouraged concurrent Azathioprine and Mesalamine usage unless you are switching from one another.

      Budenofalk is acorticosteroid . I don't know how you take it and how much but as far as I know (and from my short term Prednizolone usage when I was first diagnosed), the culprit might be it. I'm almost sure about your vision. Ask your doctor.

  • Posted

    Hi my daughter is13years old and as been on azathioprine for 2years ,as well as mazalazine and the infusion inflixamab that she as every 8 week ,she as crohns every where that u can have it . It was a hard decision to put her on any of these drugs but it was also hard watching her suffer .she is monitored with regular blood tests and that give us peace of mine . She as been very well lately and has been able to go out and be with her friends and enjoy her life unlike last summer so I would recommend you give it a go .
  • Posted

    I wish I could be of more help. My journey involving Prednisone and Azathioprine began in June and July of last year. Before this the strongest drug I might take, very rarely, was Ibuprofen. I'm really worried about both drugs and their side effects, especially the long-range side effects; like, cancer and new autoimmune diseases. My disease now is one in which my own antibodies mistake my liver as something to attack. My blood gets drawn and tested each month. Glucose must be monitered. Certain liver enzymes and other specific levels of substances must be watched closely. High glucose reading could indicate beginnings of diabetes, a possible long-range effect of the Prednisone. I did get nausea initially (and projectile vomiting one day. Good thing I work outside gardening.) That was before I learned to take Azathioprine in the evening after dinner. Much much better! I learned that helpful info from one of the forums I belong to. Heard about other Azathioprine side effects, too; like, hair loss, easy bruising and bleeding (on my arms), rash and vision not as clear.. Yes, I have all those and I try to overcome these symptoms and other possibilities while I work on healing my body. The way I'm doing it is to take vitamin supplements that may be depleted either by my condition or the Pred and Aza. (Calcium, Vit D, Magnesium, Vitamin B12, Biotin, Vitamin E and K2, and sometimes Vit C) way back when I first had an inkling in May that I needed to eat more liver-supportive foods I had begun to add or subtract certain foods from my normal fare. By the time I was in the hospital I was trying to only eat organic vegetables and fruits, (fruits only twice - morning and afternoon), sprouted organic grains, and healthy meats - no antibiotics... After I left the hospital with a prescription for 60mg a day of Prednisone, diagnosis of AIH, and warning of another medication (an immune suppressant that I would probably have to stay on for the rest of my life), my friends paid for me to see a homeopathic doctor. She spent hours with me, prescribed several homeopathic medicines, a couple of supplements (which ended up not being helpful) and some other dietary suggestions to keep down inflammation, which I included in my dietary regime: no dairy, no soybean products, no foods in nightshade family, no gluten. Everything else related to food intake I had already changed. I also have continued to work outside gardening and I stay active. I need to start and continue a daily meditation exercise because I'm sure that will be very helpful. I have discovered I can't mess with my medication (too much) on my own. During December, when I was on 10mg of Pred and 40mg of Aza, I tried cutting everything in half. My liver enzymes shot back up into the 600s (supposed to be under 40) and I felt super fatigued and depressed even though I was being extra careful of the foods I was eating. When I went back to my correct dosages I started feeling better. Next blood tests showed enzymes back around 80 and 90. Unfortunately, those same Azathioprine symptoms are still persisting. My mantra now has become, "I am healing. I am healed."

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