Starting Azathioprine - Nervous!

[Mrs_R]

Hi everyone! Sorry if this isn't posted in the right place but just wanted some reassurance and advice really.

After being ill for almost 10 years now, and following a formal complaint about a Gastro Registrar I have been seeing for over a year (with no diagnosis), the hospital gave me an appointment with the top Gastro Consultant last week who straight away diagnosed me with Crohn's Disease and has prescribed me Azathioprine and Omeprazole to begin my treatment. I am just wondering wha to expect with the Azathioprine more than anything else? I am being started on a relatively low dose as I know they did a blood test to check the liver enzyme levels and mine were half of the kind of 'normal' level I think he said. I know I will be having weekly blood tests to begin with but I am just worried about my day to day life in the future and how dangerous this drug is?

Is it true that I can't be around people with coughs or colds etc? If I get sick with the flu or something when taking Aza, is this considered dangerous? I have read the leaflet the hospital gave me and I must admit I am rather scared about starting this drug. I am desperate to get my Crohn's into remission and know that I cannot let it go untreated but now I've got myself into a state worrying about this medication. Am I just being silly or is it something to take seriously? What are the main side effects and which are the ones to worry about? Sorry for the million questions everyone and thanks in advance for any replies!

 

[DJW]

Hi Mrs_R,

I've been on it for over 2 years now.

The first 10 days or so was the hardest. It felt like I had the flu. Fatigue, nausea, blah feeling.
It did pass. The fatigue lasted long but I've adjusted with no issues.

Much to my surprise, I don't catch everything going around. I spend winters around kids in hockey rinks.

The risk of aza compared to uncontrolled Crohn's was a no brainer for me. I've had enough life threatening complications to las me 3 lifetimes.

Sending you my support.

 

[FrozenGirl]

For me aza made me rather tired the first couple weeks but it faded.

It is true you should avoid people with cold or the flu. It isn't however the end of the world if you do hang out with someone sick. Just be cautious. Use hand sanitizer, don't touch your face etc. if you do get sick call your doc and ask. Some will have you stop aza for a bit others will just tell you to watch and call if symptoms get worse or don't go away in x amount of time.

I loved being on aza. After the fatigue was gone I had almost no side effects and it was working great for me with Remicade. Unfortunately I had to go off it due to my white blood cell count being too low but I wish I could go back on because it plus Remicade was the closest I ever got to remission.

 

[shamrock15]

I do have fatigue but am not sure if that is due to aza. For me it was a perfect complement to the remicade and finally got me to remission. I haven't had the side effects that some are worried about. As for the colds/flu, I believe I have only had one flu (H1N1) and a couple small colds. Like DJW I used to spend a lot of time in arenas, and now I only spend it surrounded by sick school children! It doesn't seem to have harmed my responses to seasonal illness at all.

 

[DaisyB]

I've been on aza for a year now. I suffered bad side effects (terrible muscle pain) when I went to a higher dosage too quickly. When that happened I went down to the lower dosage again for a longer period of time and then back up to the higher dosage with no issues.

Aza along with Mezavant have been very helpful to me although it took a long time for the aza to kick in. I haven't found that I have become more susceptible to catching colds etc. I do my best to avoid anyone I know is unwell.

I chose not to read up on the side effects of aza (which I know is pretty ignorant of me) but as as already been said it is a no-brainer when its a choice between taking aza or suffering the symptoms I was experiencing.

 

[TommyBones]

I'm sorry you've had such a long battle before diagnosis, I hope they can fix you up. Aza did not work for me; like you my blood test showed to start at a low dose. After a few days I felt like I had the worst flu of my life, suffered like this for a couple months to the point of lying in the fetal position at times. Started at 50mg, upped to 75mg when blood tests looked fine, got worse. If symptoms last too long call your GI. Doc moved me to 6MP, which is the same drug, it just gets processed after the liver rather than before. Now I feel as normal as I can, several months later at this point. Doc is adding remicade or humira on top of this soon. It should be noted that everyone is different, as seen above, Aza works for many.

As you know, untreated Crohns is much worse than the meds. Take 'em with a big grin on your face. There are worse things in life.

My teaching wife, who refuses the flu vaccine, brings home many many colds but I never catch any of it.

I know this is hard, I was dx'd in January & I struggle through the physical & mental pains daily. Take what they say, experiment with diet & try to make the best of it. That's my strategy.

Good luck to you.