Just Started new medication for Crohn's

[Kathy6]

Hi I've just started taking taking Azathloprine tablets 150 mg for my Crohn's a few days ago, I was on Mesalazine, quite a high dose, which seemed to be helping my bowl symptons but not my mouth ulcers. I have come off these and have been put on this new medication, but have noticed that the ulcers on my anus are becoming painful again. I'm concerned my symptoms are going to get worse again before they get better again, has anyone have any experience on this, that can give ,e some advice of what to expect, also I know this new tablet is a bit of a double edge sword, as it can open me up to other infections.

[HopefulAl]

Dear Kathy, I have Crohns and I have been on azathioprine since 2008. It takes a short while for it to get into your system but when it does, and in my own situation, it worked very well. I had large and very painful ulcers everywhere in my mouth, side of tongue and back of throat - azathioprine stopped them. So long as I am careful in what I eat, my bowel is good and on azathioprine, I can even eat foods that I would have never thought possible. It is an incredibly powerful drug and does come with side effects, none that have bothered me so far. Read the pamphlet that comes in the medication box. I have to have four weekly blood tests to monitor my liver function (LFT) which has been elevated since taking azathioprine but I've been told that this is the worse of the two evils. I hope it works as well for you as it has for me. Please feel free to contact me if you want to ask any more questions, seems as though we had similar symptoms (the oral part of Crohns seems less familiar) I am male, 47, diagnosed early 2008 and doing pretty well at moment as far as my Crohns is concerned 😀 Alan

[Kathy6 in reply to HopefulAl]

Thank you Alan that was really helpful, cross fingers it works as well for me as it has for you.

[Kathy6 in reply to HopefulAl]

The worst thing I'm finding it hard to come to terms with what I have, part of me wishes it would go away, don't really want to take these tablets for the rest of my life.

[Angep in reply to HopefulAl]

Pretty much everyone knows someone with autoimmune disease now. It's like a cancer!! It makes me wonder what's going on and why they can't find a cure for it. We have the symptoms treated and hope through doing that we don't get any other horrible disease!!! I'm greatful for the fact I can work again and have a reasonable quality of life. I do miss the person I was !! As in I miss my energy!! I hate the tiredness, the brain fog!! For me they are the worst. Oh well, off to work now. I only do 5 hours but it feels like 12!! But like I said I'm greatful to be able to go and earn momey😁👍. Hope you have a good day.good to see your meds are working for you.

[HopefulAl]

Hi Kathy, there is a chance that once you have been on azathioprine for a few years, you may go into remission. I lead an almost normal life (subject to a few obvious diet restrictions) so there is much to be hopeful about. I really hope it works as well for you as it does for me. You'll feel like a new woman Alan

[Kathy6 in reply to HopefulAl]

Thank you Alan, I hope so, just been feeling so shit for such along time that I can't believe I will feel any different, it would be nice to feel like a new woman lol

[Angep]

Hi Kathy, I couldn't take Azathropine because it made me ill. I'm on Humira. They wanted me on both but it wasn't to be. My mouth gets sore on and off. I also found it hard to accept my ilness. I flatly refused at first!!! But have come to accept it now. You have to in the end to move forward from it. It's not for the faint hearted for sure.

[Kathy6 in reply to Angep]

HI Ang, I've only been on them a week so its early days, my fatigue is bad at the moment, not sure why, I did seem to pick up last week and had energy, but have tried to go back to work after the holidays and it has come back worse. My other symptoms seem to be better, but the fatigue is really debilitating, its very frustrating.

[Angep]

I understand that if you are in a flare the fatigue is bad!! But there are also people in remission who stiff get the fatigue.since taking the Humira I've had days where it hasn't been so bad. Saying that I had to go to bed the other night at 6.45pm because I just couldn't stay awake anymore!!! I find I've gone from sleeping for long periods of time too sleeping a few hours then waking up early hours and staying awake!!! When I went back to work after my op I thought I was going to die!!! It made me feel really ill.i struggled but I work 4 x 5 hours shifts and that's all I can manage. I feel for you I really do. We have to keep active because it really helps the Crohn's but not stress our bodies either!!