Having been reading side effects of azathioprine..imuran

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i was diagnosed with auto immune desease about 3 years now, and taking imuran.  I hate medication, although I know sometimes you must take it, but I was reading side effects of imuran....I alway have metallic taste in my mouth and itchy skin or scalp.  Drives me nuts.  When I was diagnosed, I was told I have schlorisis (spelling?) of the liver.  Frightening.  However, I feel healthy, don't really have any problems other than that which I just mentioned...but I hate taking medicine.  Was looking on Internet for all side effects and that, in itself, is a bit scary.  Cancer, cancer, cancer.  I would love to come of the imuran, but I suspect that is not a go.  I have to go back to USA for complete checkup and blood work to see how I m doing, but I wanted to talk to others who are going through the same thing.  You would think they would be able to clome up with something that would stop our own cells from destroying good cells.  Anyway, I have enjoyed reading all comments...it helps to know how others are coping.  I guess I will continue with imuran .....at least till I see doctor.  Thanks to all for being informative.  Good luck to everyone.

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  • Posted

    I have been on 150mg Azathioprine for six months.

    Apart from an initial hiccup, which with the benefit of hindsight probably was not caused by the Azathiprine, I have had no problems.

    However this discussion forum shows that other people do experience a variety of side effects, some of which sound very unpleasant. The discussions also suggest that any side effects disappear quickly once you stop the Azapriothine.

    The conclusion therefore seems to be to try it and see what happens. There's nothing to lose, and much to gain if it helps your condition without side effects.

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  • Posted

    I was reluctant to take azathioprine when first diagnosed but surrendered after a year of sufferance. It was horrible and I had three children under 3 yrs to care for so I really had no choice. I was one of the lucky ones since the only side effects I had was that my liver enzymes were up and my wbc count was low. I was on azathioprine for 14 yrs. While in remission I did quite a lot of research and consulted various health professionals. I discovered that its an imbalance of the bacteria in our gut that is the main cause. We have more unhealthy bacteria in the gut than healthy bacteria. While on the med I removed all my food triggers (eg gluten, dairy, red meat etc), took supplements (Vit D, Probiotic, Magnesium, L-glutamine, Aloe Vera, omega fatty acids among others) and learned to relax with light exercise. If we just eat anything we like while on a med, allergens can still be doing damage to our intestinal lining since the med is just masking the symptoms. There were many occasions when I spoke with my doctor about stopping the azathioprine but she always adamantly told me that if I was to do this I would be "playing with fire!". Against my doctor's advice I built up the courage after 14 yrs to stop taking it and did so over 10 months ago. I'm happy to say that I'm still in remission. My advice is that if the azathioprine is keeping you in remission use the time to heal your gut by changing your lifestyle and when you feel the time may be right then maybe you can stop it too.
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    • Posted

      Hello bettie4,thanks for your Imput.  My biggest concern is my liver....I now have sclerosis...no alcohol.  I understand the unhealthy bacteria...I do have ulcerative colitis as well. But I am lost s to what to eat.  I read so many things ...eat this eat that...don't eat this....and it changes from who ever you speak to.  My doctor never really told me what to eat, just. Healthy diet.  I don't know what that  is anymore. I thought good  bacteria yogurt was good. But that's dairy.  Supplements, scared of them too.  Just general confused and I keep reading.  Imuran is not a cure, there is no cure for me, I am told my liver would fail, but if I am careful, I could live another 20 years.   By hen I should be gone anyway.  Well, thanks for info.  Anymore advice is welcome.
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    • Posted

      Yes Deano thanks for info.  The doctors don't tell us anything about this condition.  I have an issue with this, as there is no info at all given to the patients with autoimmune conditions. Because of this we go elsewhere for advice. In fact I don't think the general GP knows much about it at all! Even the specialists don't give us any information mine just said take Imuran and Prednisilone and come back in 6 months and get another blood test before then.  So I went to an alternative medical doctor who charges the earth but he has helped me a lot.
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