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Crohn's Disease Forum » Support Forum » Vent Away » *&$*^"$ Azathioprine... >.<


05-17-2008, 04:14 AM   #1
coachvee
 
*&$*^"$ Azathioprine... >.<

So after going to the clinic this past THursday, they put me on Azathioprine - for some reason, despite everything I'd read, I didn't realise this would be an option for me before considering surgery.

The dosage was to be 200mg (as its based on your weight) - but my nurse told me to use 100mg for the first 2 weeks.

I read all the info they gave me, made notes of when to do my blood tests etc... and took careful note of all the side effects you have to report.. especially the thing to do with acute inflammation of the pancreas. "Sudden severe abdominal pain or vomiting? STOP TAKING STRAIGHT AWAY"... ok got it.. doesn't sound very nice that.

Took the first dose (HALF dose, sorry) yesterday.

So guess which side effect I got - at quarter to 3am?? >.<

Whilst trying to get off to sleep I had bizarre pains all over... including one all the way down my leg. Odd indeed made it a bit hard to get to sleep, but got there eventually.

THen quarter to 3am woke up with the worst abdominal pain I'd ever had, can only describe it as crushing. Unlike how I'd normally receive my Crohn's pains (fading in and out.. so they do get that painful, but I have respite for a few seconds usually) it was a constant pain with no letup, all down my front and all up my back. I also felt extremely sick but I really, really hate vomiting (unless it's uncontrollable) so I stopped myself doing so.

Woke up my poor boyfriend with my rolling around in pain... I don't remember how long it went on for but he reports that I only stopped around 5.15am.

So. I have to stop taking the damn thing after the first day.

05-17-2008, 08:49 AM   #2
Kev
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Join Date: Jun 2006
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Hey coachvee.. Yeah, pancreatic pain is pretty intense. And the other pains with an AZA/IMURAN reaction aren't nice either... I literally couldn't walk when mine hit.

OK, on the positive side of things, most of this will go away PDQ pretty soon after you stop taking it.. I was on it for 19 days before I had a reaction, and the pains disappeared within 2 days AFTER I stopped. As for the pancreas, it might help if you try a clear fluid diet for a couple of days, then gradually add in other solid foods. Pancreas is responsible for producing digestive enzymes, so if you back off on foods requiring them, it will give your pancreas a little restbit.
The other positive is that your very brief exposure to AZA/Imuran means youv'e extremely low exposure to any of those rather nasty long term side effects AND you don't have to go thru week after week of bloodwork and follow-ups.
__________________
KEV

Dx'd July, 2006
Meds: Flagyl, Cipro, Pred, AZA.. to no effect
Low Dose Naltrexone Nov 2007 - May 2014
Remicade June 17th, 2014
05-17-2008, 10:36 AM   #3
butt-eze
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Hey coach. When I was taking azathioprine I had those same pains. I thought it was because the drug wasn't working and therefore my crohn's was causing the pain. Now that you point it out it makes sense what you say. The pain eventually went away when my doctor had me discontinue. I did have the throwing up big time. I threw up when I took a sip of water. The dumb thing is I tried aza again a few months later.
05-17-2008, 10:46 AM   #4
Kev
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I HAD to try AZA again.. just a few weeks later.. just to be sure it was a reaction to the AZA... not some other complication. I took 25mg, and almost immediately had all the same pains, etc.. Again, stopping the AZA stopped the pain in 2 days.
05-20-2008, 05:26 AM   #5
coachvee
 
I've called my nurse and they wanted me to try it again. I was quite insistent that I knew it was the drug doing it - I had never had abdominal pain to that level, and never completely constant, and I had never had the drug, this tells me it IS the drug doing it. Even if I didn't have a piece of paper telling me to stop taking it, I would have stopped, because of that simple logic.

In the end she said they had to "respect my choice" if I didn't want to take it again! WHat annoys me was that they said that "usually" this doesn't happen - but it CAN happen - how can it not? If your body is intolerant, of course it would happen that soon! I've seen at least 3 people on these forums saying they had the same thing - and it is known to be a rare side effect - "rare" doesn't mean it never happens! I don't understand why they are so resistant to believing it is the drug.

What this all boils down to is it feels like they are making me out to be difficult, and it feels like they don't believe me and that's really upsetting. I thought I could count on them being supportive but obviously not.. The worst thing is that this makes me feel like taking the damn thing again just so that they believe me but at the same time, I am really scared of going through that again, I'm worried it will get worse, I mean my boyfriend was almost calling for an ambulance it got so bad.

Apparently she is going to speak to the doctor about it so I have to wait a bit more to know what to do.
05-20-2008, 08:58 AM   #6
Kev
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I understand your anger, your frustration... everything. I know its extremely hard to turn the other cheek at times like this... but I think their reluctance to accept your take on the situation is not so much just general medical superiority complex BUT they need to be absolutely CERTAIN it is the drug causing this, AND I 'THINK' they are hoping it is a coincidence, a mistake, a mis-understanding.. ANYTHING BUT that they may forever have to rule out one of the limited number of drugs out there intended to treat this disease.

Like, my GI was 99% certain I'd gone toxic on the stuff, after all, I ended up in the ER, she'd seen the doctors reports from there, she saw the rash it gave me... AND, since my daily medical diary is pretty comprehensive and current, the possibility of it being something else, something new, unrelated to the drug was extremely remote. She still had me try it again anyway, knowing that it was quite likely the symptoms would return. They did. That finally closed the case on it... It wasn't that she didn't believe me; just that shutting the door on a treatment forever with this disease is something only done as a last resort.

And the beauty of it is... having taken that test dosage, there are never any doubts in my mind. We gave that med our very best shot; it just didn't work. OK, lets forget that N move on...

I could be wrong, but I think a lot of what you're dealing with is very similiar..

Just a thought, OK?
05-23-2008, 05:05 AM   #7
coachvee
 
Yeah, I think I overreacted a little (from being cooped up at home for some time, and just generally feeling useless, made me go a bit mad, lol)

Shortly after making that post I decided to take it anyway on Tuesday, and see what happened, and I got very worried, but nothing happened that night (bar weird little symptoms, sore throat, bit dizzy etc)

TOok again Wednesday, had the pains Wednesday night again, right on schedule exactly like last week - 12hrs after taking the tablets, intense pain for 2hrs and feeling very ill.

Took again Thurs (cos nurse asked me to take until Friday & see how it went) and had nothing last night.

So am taking again today.

I don't get it .... I don't think I am having an extreme reaction as per Kev, but there's something odd going on.

I am still taking half of the dose I should be.

Hmm.... it's one weird drug indeed.
05-23-2008, 10:42 AM   #8
Kev
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Join Date: Jun 2006
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You are right.. there is something odd going on. Like, i'm no expert (by any stretch of the imagination)... and I only had one experience (per se.. I took 50mg for 2 weeks w/o issue... doubled to 100mg.. on my 5th day at that dosage all hell broke lose... Came off of it... stayed off for days... think it was 2 weeks. took 25mg AND all hell broke lose again).. Are you taking other meds? or unprescrbed meds.. OTC, or homeopathic combinations, vitamins, enzymes, anything that might interact with the AZA. There was a post on here .. I don't recall where... and it might not have been AZA.. but I think it was (my memory sucks).. but I think it was a cautionary tale/warning about not taking it with a very common other IBD med... I don't recall if it was 5-ASA, or pred.. but think it was something along those lines. does this ring a bell with anyone? Anyone on the forum who also thinks they recall hearing this, or know the post i'm talking about PLEASE jump in. This could be crucial to what is going on here...

In the interim, I'd suggest you compose a list, check it twice, then checkout the AZA website, even wiki, to see if there is anything you are taking, eating, doing etc., that could be playing havoc with your system. One way or the other, pro or con, if you can pinpoint what exactly is going on.. you may find a solution. At least you'll sleep better knowing you did everything possible to resolve all this.
05-27-2008, 10:25 AM   #9
coachvee
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Join Date: May 2008
Well, from what I have experienced so far (just upped my dose again - i am now 50mg off the dose I should be taking) it seems like I experience these symptoms when I up the dose. Each time I had the pain was after either first taking the drug or increasing dosage...

WHat I'm hoping is that I can bang myself onto the high dose, dealwith whatever happens then from there, it might steady out.

Only thing is that I have a constant nagging lower back pain since last night. :s Emailed my nurse about it as I Couldn't get her on the phone... What I'm trying to do is get myself up onto the dose I should be on, then get my scheduled blood test this Friday, and then they can finally SEE what's happening, rather than me telling them!

The only other thing I'm on is Pred and they said it is fine to be on both - they gave me the pred for short term whilst the aza starts working. I also noticed my asthma is playing up a bit lately. Not sure if that is related.,.
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