Scared

[vickie_x]

So I've just been told to start azathioprine and I have the tablets and the blood work forms... and a terrible case of nerves.
At 16, this has to be the biggest decision of my life and it's one I really wish I could run from. I know how beneficial this drug can be yet I am also aware (maybe too aware) of it's possible side effects and they scare the living daylights out of me. That and I don't feel my Crohn's to be anywhere near bad enough to warrant something so strong!
I currently am on a course of antibiotics for a throat infection (YAY!) so I know that it's not really wise to start something that suppresses the immune system with an infection so I have until thursday at least to ponder this.

I'm not too sure why I'm posting but it's definitely been therapeutic (I've stopped crying!). I think I'm just looking for other people's experience with this drug so any input would be lovely

Thank you if you read this rather self-pitying rant x

 

[lulu2]

Hey Vickie, I dont have any experience with this drug myself, but your GI wouldnt give you something if he didnt think it was right and safe for you. I know it's scary but your doctor wouldnt do anything to harm you! If you're very worried (as indeed you seem to be given you've been crying), why not call him up and make another appointment with him and before you go make a list of all the things that are worrying you that you want to talk about.

Remember doctors are there to HELP you, it's their job to listen to your fears and to reassure you. Most doctors are lovely and Im sure your consultant wont mind talking to you even if its just a telephone consultation to lay some of your fears to rest.

best wishes, hope you feel better soon

xxxx

 

[vickie_x]

Thank you for replying. I think I know deep down that this is obviously the best course of action to avoid surgery but the initial shock of it all just really got me. My GI has told my mum when she went to get the blood forms that he's willing to have another appointment just to reassure me so I think I'm definitely going to ring up on monday to make that. I'll make sure to make a list of things to talk about though, great idea - thank you x

 

[lulu2]

You're welcome. of course it's a shock, its a big drug and crohns disease is NOT a nice diagnosis. Defo talk things thru with him Im sure he will be able to make you feel better about it all.

And hey, any drug that stops you feeling poorly can only be a good thing, right?!

Chin up, you have a lot to deal with for someone so young, and you're clearly a v strong person! Keep fighting and keep smiling.

xxxx

 

[ekay03]

I have been on 75 mg azathioprine a day for years and years and have not had any ill effects

 

[Misty-Eyed]

Please don't worry, Vickie! It'll only make your symptoms worse if you do!

If it helps, I was on aza for yearsss between the ages of.. I don't even remember now. Probably 10-14 or something like that. I certainly didn't have any side effects.

 

[vickie_x]

Hearing people have been on it long term and not had any problems is so reassuring. Sometimes it's too easy to get wrapped up with all the horror stories and forget how many people are actually fine on it. Hopefully it will have sunk in by the time I speak to my GI and I'll be ready to tackle this head on x

 

[Miggles]

Hi Vickie! I went through the exact same thing back in March when my GI doctor told me he'd like me to start Aza/Imuran. I was waffling a lot because I was't sure what going on it would mean for me. The best thing I can tell you, after freaking myself put about the side effects, is to remind yourself that not everything than can go wrong will go wrong. You might get a side effect or two in the first little while, but if you do, it won't be the end of the world. You can always go off it if you decide it isn't the right drug for you! One of the big things that got me to try Imuran was the thought that - well, what if I don't try it and I get sick? How angry will I be with myself that I didn't even try it and maybe could have avoided a bad situation?

Anyways, from the sounds of it, you've done your reading, and while it sounds scary and isn't magical , at least if you try it, you'll know! They'll moniter you closely, and any side effects will be reversible (no matter how crappy it seems at the time)! All that being said - I did have a bunch of stomach upsets in the first two weeks, but my body adjusted to it, and everything is fine now! My crohn's wasn't that active, but I think it's made a difference! I just upped my dose from 50 mg to 75 mg this week. Oh, and definitely take it with meals! Save yourself some trouble there! Good luck!!

 

[crazycanuck]

Hey vickie. Have been on Imuran for a year and a bit now, started at Christmas 2009 and no effects yet other than the occasional flu or cold I may have not otherwise had but we will blame Remicade for that.

Best way I think about side effects (for me anyway) is to think about what is my alternative. When I was about to start Remicade my mom freaked and thought the side effects were the worse things in the world.

In your case with Imuran what's your next alternative. If not Imuran then what? Well its likely either Remicade or Humira of which the potential side effects are quite a step up or you may opt to have surgery or you may opt to go no treatment and stay sick and possibly get worse. While there is nothing wrong with any choice you make I try to think about what will give me the best chance at living the best life I can and well for me its Remicade and Imuran.

Remember all drugs must be approved by federal boards and reviewed by many people and tested on many more before they even think of making them legalized and have them mass produced. In the case of Imuran it has been approved nearly all around the world and passed numerous federal review boards. They wouldn't put you on anything unless it was reasonablly safe to do so.

Also take Miggles advice and take it with food or for me milk worked. Can be very tough on the stomach and make you feel a bit sick as Miggles said. It did get much easier though very quickly.

 

[vickie_x]

Thank you both. It really does help hearing it from other people how helpful something can be. And although it seems to me that my Crohn's isn't that severe at the moment, without this it could get worse and I wouldn't want that at all. So it's definitely a good perspective to have on side effects crazycanuck, a little bit of feeling under the weather while it gets into my system is nothing compared to the prospect of surgery - better to take anything to give me as long as possible before they start talking of the operating table! And thank you for the food tip Miggles, I'll have to start remembering to have breakfast

Another quick question - my GI is starting me on 50mg for 2 weeks before upping it to 100mg, is this a big dose or about average? (I'm approx. 50kg and 160cm)

Thank you everyone, you have really put my mind at ease and made me realise that although this seems like worst thing in the world right now, there's worse out there that can be avoided by getting the best treatment now and that's what I plan to do x

 

[Miggles]

I think the 50 mg pills are the smallest dose Imuran comes in - but your dose is standard. there's a formula they use to calculate the max dose based on your weight, but I can't remember it right now. It seems that most people take one or two pills a day. Also a fun fact to consider: they use Imuran as an anti rejection drug in kidney transplants, and they have to take something ridiculous like 6 pills a day! We cronhnies are lucky in that count!

 

[vickie_x]

That's good to know, I trust the doc to work out the safe dose but it just seemed like a big number (then I remember I'm on 4,000mg of pentasa and suddenly 100mg seems tiny!). And very true with being lucky that about 100mg is sufficient for us x

 

[crazycanuck]

100 mg is probably about right. They do it on mg per kg. I'm not weighing in at 73 kgs and I'm on 200 mg so I'd say (as I'm not double the weight) thats a relatively low dose or I'm on a high dose.

 

[Joleen23]

Hey Vickie , Im on Aza 150mg a day and my crohns has never been better Kinda feel like im getting my life back , seeing my friends again and going out more. I do get some joint pains but try not to get stressed , i do and i think i make myself worse with the worrying. I have also caught an infection whilst on the aza and just a short course of antibiotics and it's cleared up and im fine , My Gp has really been very cautious whilst i've been on this , so really don't worry. Hppe this helps

 

[bangarang]

Its ok, I always get nervous when trying new meds. I was on azathioprine for about 7 or 8years, helped me and never gave me any bad side effects.

 

[kiltubrid]

I started taking Azathioprine (100 mg per day) three months ago for a flare up I had after years of remission and drug-free living (I had developed an allergy to Sulfa after 20 years, so I just stopped taking anything). Anyway, Azathioprine works great and I have had no side effects. I take it with breakfast to avoid nausea. And I wash my hands frequently, as the doctor recommended, to avoid catching colds or flu. The only downside is the regular blood tests, but that's only an inconvenience, and frankly, I'd rather be cautious and have my doc checking my white count and kidney function regularly.

Good luck, Vickie!

 

[Dan]

Hey Vickie , Im on Aza 150mg a day and my crohns has never been better Kinda feel like im getting my life back , seeing my friends again and going out more. I do get some joint pains but try not to get stressed , i do and i think i make myself worse with the worrying. I have also caught an infection whilst on the aza and just a short course of antibiotics and it's cleared up and im fine , My Gp has really been very cautious whilst i've been on this , so really don't worry. Hppe this helps

This is basically what I go through when on Azathioprine though I am always catching infections in my chest or throat.

Best way to try and ease off the pain of the joints is to try and keep active, regular exercise.

 

[vickie_x]

Thanks again for all your imput. I still haven't managed to speak to my GI (though the secretary now knows my voice very well!) so still not managed to speak to him about keeping just the pentasa as my maintenance med and putting off the immuno-suppressing for as long as possible as I'm currently in what I would call 'remission' - not had that confirmed but all my blood work looks good (apart from being anemic but that's been an issue before crohn's arrived) and normal toilet habits. I ALMOST feel like I used to - only difference is the tablets in a morning and at night!

So I have my list of things to discuss for my appointment in a couple of weeks but currently I'm as happy (as one can be about such a strong med) that if there's no other option, I'll go for it thanks again x