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Has anyone else flared up whilst on azathiroprine?

Hi I am new to the group was diagnosed with crohns last November was very reluctant to accept it at first I was working abroad when I got my first flare and had to return home. I then took a very stressful job and by March 2013 I had another serious flare and ended up on 40g of pred and 100g of azathir it was my first experience on strong meds and the pred had massive side affects however I did after about 6 weeks start to feel better but I was left very underweight. Gradually I started to feel better and tapered off the pred in sept I noticed my hair was falling out and then read on different forums that azathri side affect is your hair falls out so I then went down to 50g. howver by mid nov I started to feel really tired and my eyes were quite blurred. I don't know if anyone else has had this affect. The tiredness got worse and then I started to have severe cramps and vomiting the other day. Its so difficult to know if it was a stomach virus or its the crohns flare up. I think because I started to feel rough before I am associated it with crohns. I tried to phone the the ibd nurse so I could ask her if I should increase my medication but she didn't get back to me. It feels so lonely when you don't have any support. My Gp is very difficult to get an appointment with usually takes 10 days and the other gps at the surgery don't know enough about this condition. In the end I have decided to put myself on a low dose of pred as I am so scared that the flare may get worse and it is nearly xmas after all. I would appreciate any advice. Thanks
 
Hey jules,
Been on 150 of aza for the last few weeks, had all the same symptoms as you. The blurry vision through to what feels like something similar to my old crohns flares. Im thinking its just another side affect at this time.
My feeling is, it's a nasty drug but for me somewhat a necessity. Try and stick with it and get that appt with your doc!!
 
thanks for the advice up until a couple of months ago the aza was not causing me any problems it was only when I tried to taper it down. The GI said it wasnt the crohns that's affects your eyes but I knew it was you know your own body. Hope your able to enjoy your xmas so many people with this horrible disease
 
Welcome to the forum Jules. I'm sorry to hear that you aren't feeling so great, especially as the holidays are approaching.

I have two concerns in regards to your self medicating.

1) Your Azathioprin levels have to be kept at a therapeutic level, so switching from 100mg to 50mg is not only making your symptoms return, but it may take just a little bit longer to get you back to that therapeutic level once you return to your prescribed dosage. While on Aza, you should be getting regular blood monitoring in order to maintain safe theraeputic levels.

2) Taking prednisone at will can be harmful in the long run. There are many ill side effects from not properly tapering down from this, and could do irreversible damage to your adrenal glans. There are also many that will tell you they suffered with hair loss, or hair thinning, while on prednisone, and it often would take weeks from being off the drug for the hair to return to normal.

Another reason many may be losing hair is due to vitamin deficiency, specifically B12 and folic acid and vitamin D.

Please call in and make that appointment with your doctor. Knowing that it may take ten days means you must call as soon as you can. Are you dialing yet?

Wishing you the best!
 
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