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Azathioprine and Side Effects - Please help

J

Jan

Location
Preston, UK
Hi Everyone,

I started on Azathioprine last Thursday so I was due to up my doseage today but haven't.

The side effects have just hit me like a train. I have nausea, dizziness and the runs like you wouldn't believe. Literally in the last half an hour I feel like I've been hit by a train and I want to just go home to bed.

My question is - how long is this going to last and has anyone any tips for getting through it?

Thank you all in anticipation of your help.

Jan x
 
Rebecca85

Rebecca85

Location
Nottingham, UK
I'm afraid I can't offer you any advice, but I can offer my sympathy! I took my first dose this morning (I have 50mg tablets so just took one to start) and I am feeling pretty queasy now. So please, does anyone have any advice???
 
MapleLeafGirl

MapleLeafGirl

For me, I had some nausea and dizziness as well as extreme fatigue for the first couple of months and then nothing. It did get progressively better. I am now happy to say that I am side effect free. Taking it with food helps and as late in the day as possible. Make sure you keep up with your blood work as that will tell your doctor if there is something more serious happening. If you are really concerned, I would give your doctor a call.
 
Astra

Astra

Moderator
Sorry girls, can't help with this only to say I will never take it again!
It's toxic!
Within 3 months I was covered in bleeding itchy hives all over my legs and torso!
My doc was dead shocked
never again!
I think all meds cause nausea at first til your body adjusts, just give it a bit longer
xxx
 
J

Jan

Location
Preston, UK
As you know, I felt like death warmed over yesterday as the side effects of Aza kicked in. Bearing in mind that I'm only in the first week of taking it and I'm only on 25mg. I should have doubled the dose yesterday but thought I'd wait until the weekend, just in case.

Anyway, I felt dreadful and drove home on auto-pilot trying not to pass wind (just in case) and looking for places to pull over just in case I had to. So I was feeling really sorry for myself when I got home. Then my husband surprised me by telling me he'd been and got me a cat! I love cats. He'd been to the rescue shelter on Tuesday and chosen the said animal and we pick it up tomorrow. I can't wait!

So - cure for the side effects of Aza - get a cat!!!! I still feel sick, but I don't care anymore!

Jan xxx
 
A

acg101

I was on it for over 8 years. It took my body 6 weeks to get used to it. At start, I had similar side effects as you are describing, and I could not fall a sleep. At times, my dosage was elevated to 200mg (100 x 2/day) but typically 100mg. Its an effective drug with some bad side effects. I hated it. No 6 weeks post surgery, I am so happy being off this drug, BUT it kept me going for some time.
 
K

Kusherb

hmm thats so strange ive been taking azathioprine for a couple of years now nd had no side effects what so ever. I'm taking 150mg a day too! saying that mind i dont think its helped one bit with my crohns
 
U

uli

I was only on aza for 3 weeks, when suddenly severe vomiting kicked in half an hour after swallowing the dose (pill) - were then taken off the med. I feel with you, Jan.
 
Scifimom

Scifimom

I am on 150 mg a day since last august. I still feel fatigue and sleepy, and I also dont think AZA is working for me. (I flared recently) Other than that I have excessive hair growth in my chin (I HATE facial hair) and I sweat like a pig all the time. The symptoms never became less, or gone away in the year I am taking the pill. next week I have a doctors appointment and within September I am meeting an immunologist to discuss about other solutions
 
Chrismac

Chrismac

Best of British
Hmm.. I've been on it 9 years now. They monitored me carefully after I took the first dose but I've never had any side effects!
 
Rossy

Rossy

Location
Scotland
I suppose in the majority of cases it must be of benefit, however it did'nt work for me.
I tried it last year, 150mg a day and within 3 weeks i was doubled up in pain, I could'nt stand straight and also could'nt lay flat so had to come off it due to presumed pancreatis, which was really bad :ymad:
You got to try them to find this out I guess, but it is a little strange when the meds you take, make you feel worse than the actual disease they're trying to help!!
 
vonfunk

vonfunk

Bourbon Bandito
Location
Toronto,
It didn't work for me, but i was only on it for 3 weeks before I had pancreatitis. For lots of people it's worked fine, but I'm one of the lucky sort who seems to always get the rare side effect.
 
S

saidinstouch

I would call your doctor with the nausea. It can be a normal side effect or it could be a much more severe complication that leads to liver damage if you prolong taking the medication. Better to be safe than sorry and see what they want. I had to stop within a week of starting because I developed a 102 fever and nausea which are tell tale signs of a serious issue metabolizing the drug.
 
Rebecca85

Rebecca85

Location
Nottingham, UK
Well the nausea is lessening and I am due a blood test today, so I will wait for the results before I up the dose.

Another aza related worry: I have been on a 1/2 dose for a week now, and I feel SO much better. No pain or discomfort. I thought I was imagining it but I have normal BMs! (anyone need reminding what they are? Lol). But now I'm worried that it has worked too fast, and maybe my white cells are going to drop too low, or I'll get one of the really nasty side effects. Isn't it wierd to worry about a med working??
 
crazycanuck

crazycanuck

Location
Langley, B.C.
Hey there glad things are getting a liytle better for you. I had woozyness, pain in the gut, passed out once, and puked a few times when i first started last christmas. Took about a week and then it was great and was in remission until a major family event in april which sent me into my current flare. Onto remicade now.
 
Sunfire

Sunfire

I have tried Aza and Purinethol (the pure form of Imuran) and ended up so sick, I wished for death. Within a few days I developed pancreatitus and was hospitalized for it. So far all the drugs I have taken won't work. I hope it works for you.
 
dreamintwilight

dreamintwilight

Rebecca - How did the blood test go?

I've been taking Imuran since April and I was super worried about side effects and such and my white blood cells being too low. My docs have been watching my bloods regularly and even though sometimes my white blood count does vary and ends up on the low side, it's still a "normal" low and hasn't been cause for too much worry form my doc. Just make sure you stay away from people that are obviously sick and wash your hands a lot when you're out in public places. You should be able to avoid catching any germies even if your WBC is somewhat lower. :)

As far as side effects, the only thing I have noticed is that I break out in heat rash rather quickly now on the trunk of my body when I'm outside too long doing anything. But it usually clears up within a couple days. Now it's getting cooler outside, so it's not much of a problem. Also, if I take my pills late I get a headache. But no stomach ache, vomiting, fever, or anything like that. It's been 5 months now! Woohoo!
 
Rebecca85

Rebecca85

Location
Nottingham, UK
No word on the blood test, they said if I didn't hear assume it's normal. But I will phone tomorrow and double check. I will also ask about the dosage- if 50mg has had this effect already I don't think I need to go onto the full 100mg.

I already picked up a cold (my baby niece has been suffering from a chronic infection and I don't want to avoid her!). I should be ok at work, because I got into the habit of handwashing and gels when I was on the pred.

The side effects have cleared up now I think. I have still been taking my tablets in the morning because I haven't been sleeping well, and I didn't want to lie awake feeling nauseus! But I did find that the bigger the breakfast, the better I would feel later.
 
duck68

duck68

I've been on Aza for 10 days now and so far no side effects...I'm currently on 100mg and am due to increase it to 150mg at the end of next week. I will have a blood test as next week to see how everything is going with it and then another blood test a fortnight after that (after been on 150mg for a fortnight). I'm terrified of the side effects of these medications, but I'm hoping that I won't have any and that we will find something that will work for me...I actually have been feeling a little better this past week or so - so am hopeful this is the wonder drug!
 
Rebecca85

Rebecca85

Location
Nottingham, UK
So I'm not the only one to get relief so quickly? Phew, that's a relief! It just made me a bit worried because everyone said it could take 3 months to work properly, and I noticed the effects in more like 3 days! Well Duck, I hope you continue to do well on the aza and let's hope we both get remission!
 
kenny

kenny

I told my GI that I was feeling a lot better within weeks of going on it and he laughed and said it was just due to positive attitude. But I seriously noticed a decreased discomfort with environmental allergies to a point I no longer had to take any anti-histamines. I had taken half a pill every night to sleep prior to going on imuran and all my allergies seemed to disappear with a week. Not only that but I had a history of gout and other arthritic joint pain that also no longer requires other treatment.
 
M

mark squire

Hi Guys im on this to, ive not had any side effects as yet. I was on it for a couple of months, then i went in for an op to remove part of my small bowel, i was hoping to come of this drug but my doc put me back on it and on a higher dose. Really not keen to be on this because of the possible side effects. ACG101 did you say you have come off this drug since an operation? if so what are you taking instead if anything?? Should i be on something less harmful???
 
Zalanicht

Zalanicht

I've been on 150 mg for 4 months now with no side effects what's so ever but that's me being healthy after a surgery. I really think that most side effects of some drugs are not from the drugs but from the disease itself.
 
ChefShazzy

ChefShazzy

Hi Jan, I hope you are adjusting well to the Aza. I was on it for a month, it started out OK, but the side effects got worse as time went on. This isn't the case for everyone; I hope it works for you!! Good luck!
 
gringo43

gringo43

Scared also..

I finally got up the courage to start the azathioprine...just took my first dose{50mg}....this stuff scares the heck outta me....the docs tested my TPMT levels and found I have two of the genotypes that don't bod well for aza use...also I'm really TPMT deficient...still can't believe they've decided to go this route after reading all the warnings against TPMT deficient use...just hoping they know what the hell they're doing!

I didn't mean to hijack the thread....hope everyone here gets good results from this stuff...thanks for listening.

Jerry
 
autumn_rose

autumn_rose

I've been on 150mg of aza for over a year now, no side effects to my knowledge (I feel tired a lot, but that could be from a number of things) and it has my crohn's pretty well under control. I'm sorry to hear that so many people have bad luck with it :-(
 
robbo87

robbo87

When i first started talking it i suffered with really bad nausea. But i was taking my tablets early in the morning just after getting up for work.. so i changed to taking them in the evening after eating and the nausea dissapeared!

Hopefully after a week or 2 your body will get used to it and you'll be feeling much better :)
 
duck68

duck68

I've now been on Imuran/Aza for nearly 5 weeks - I'm now on 175mg per day - I haven't had any side effects, so that has been a bonus...I'm happy about that.
 
I

Inna

Most of the patients that come to the pharmacy where I work really have a hard time with Aza. That's the main reason it's not that commonly used anymore. Most of the time those side effects don't get much better. Maybe you can speak with your doc to change it. All the best to you
 
Rebecca85

Rebecca85

Location
Nottingham, UK
Well I seem to be doing OK now! GI symptoms have gone, still very fatigued, and pick up colds easily, but hey I spent most of last winter with one bug or another, and most of the summer curled up on the sofa!
 
Persian

Persian

ive been on it for 7 months. ive only gotten nauseated from it once, and that is because i downed a pill of aza and then immediately down some flagyl. that night was not pleasant
 
A

AmieinDenver

Anyone know how long side effects last after stopping Aza and Asacol?

Stopped Aza and Asacol 5 days ago due to severe side effects. Still having severe diarrhea tonight (had it while taking these meds too), also have severe hair loss, sensitivity in teeth, raw mouth, joint pain, headaches, rash, acne, scrapes and incison won't heal, etc... I just had resection surgery a month ago so I know it's not a Crohn's flare up and is caused by the meds - I felt great after the surgery and was actually regular for the 1st time in 20 years until I started taking these damned meds. - anyone know how long side effects will last after stopping the meds?
 
L

Lulu

I started Aza in Feb and have had no side effects what so ever but having said that it doesnt appear to have helped my condition either. Same with Mesalazine, started that Sept 09 with no side effects but no benefit either.
GI has now suggested we try Prednisone as nothing else has worked. I dont think they tried Pred before as I have no symptoms at all, never had, just have a badly inflammed and ulcerated bowel but no symptoms.

So now I take all 3 meds and am wondering if he will just have me continuing with each one even though they dont appear to work. I would have thought I could stop the Mesal and possibly the Aza but he seems to have the opinion of if it isnt hurting just keep taking it.
 
Rebecca85

Rebecca85

Location
Nottingham, UK
I think the theory is that a combination of meds can enhance the effects. For example, one day I had real bad stomach pains (unable to walk). So I took 60mg of codeine. An hour later, I still had pains. The only other painkiller I had handy was plain old paracetamol (acetominophen or Tylenol). So I took 2, and 15 minutes later the pain was completely gone! So codeine + paracetmol works better than either one alone, and I think it's the same with aza and mesalazine and so one.
 
K

Kathryn

I had a really hard time adjusting to azathioprine. The first few weeks were the worst for me with nausea and dizziness. My doctor gave me promanthazene and that helped with the nausea even though I still couldn't bring myself to eat. I had fatigue as well during that time period but eventually I did adjust.

I've been on it for around three years and, as of yet, have never had a bad blood test or recurring side effects other than when I go off of it and have to go back on it, or the dosage is raised.

-Kathryn
 
K

kslade

I have been on Azathioprine for about 5 months now. I am currently on 125mg. My GI told me that it takes 3 months for the drug to really start to work. So you should progressively get better as time goes on. As far as side affects go, I haven't really noticed any other than feeling nauseous and hair loss. I find that eating before I take it helps with the nauseous feeling . That was only for the first month or so, now I don't have any nauseousness. Kinda weird that as time goes on the side affects get better.

I was hesitant at first with this drug as well. I kept telling my GI that I was still getting pain, and she insisted to give the drug time to work (3 months). I listened and now I feel a lot better than I did in the beginning. Unfortunately Azathioprine wasn't enough for me and I've since had to start Remicade infusions as well.
 
C

Craig

Managed three weeks before continued side-effects effectively caused me to put my life on hold; vomiting, extreme dizziness and fatigue, bed bound.
 
M

Mr Bedfordshire

ive been on aza for roughly a month or so now and the only side effect ive had was it pretty much sending me to sleep after taking it?!

not sure whether its the aza or pentasa keeping me off the loo, but im only going around 6 times a day at the moment and sleeping through the night:thumleft:
 
2thFairy

2thFairy

Four weeks in, stomach cramps, nausea, and flu-type symptoms started. By the sixth week, I was waking up from a deep sleep to vomit.

I was fortunate in that it was a gradual build up and not acute pancreatitis, so no hospitalization for me.
 
K

kslade

2thFairy said:
Four weeks in, stomach cramps, nausea, and flu-type symptoms started. By the sixth week, I was waking up from a deep sleep to vomit.

I was fortunate in that it was a gradual build up and not acute pancreatitis, so no hospitalization for me.
Click to expand...
Sounds like most people that develop pancreatitis get it within a few weeks of starting Imuran. I'm currently on Imuran, and the thought of having to go through something like that scares the crap out of me. I was undiagnosed with Crohn's and had Gallstones simultaneously and I'd like to never re-visit that type of pain again.
 
2thFairy

2thFairy

The doctor told me that if pancreatitis were going to happen, it would be within the first six weeks. I hope you don't have any trouble with it.
 
robbo87

robbo87

well i've recently had to completley stop aza due to my lymphocytes being checked and getting far to low everytime i take 50 mg or more. just had to start again but only on 25mg which i doubt is gonna even be worth taking. The last few weeks ive got steadily worse and now have to have a colonoscopy and an mri scan in the next 2 weeks. :( im so dissapointed because up until lately the aza had been working great and id never felt better.
 
robbo87

robbo87

Rebecca85 said:
Could they try 6mp instead? That's the 'active' part of aza, but sometimes people can tolerate that better.
Click to expand...
ill find out what they are gonna try next once they've seen whats going on. The nurse mentioned that 2 possibilities could be an injection i can give myself or coming into hospital every 8 weeks for an infusion but she didn't mention any names. Is 6mp a tablet?
 
S

sashaz

I have taken azo and switched to imuran. Now I have pancreatis. I am so angry that this medicine that is suppose to help could have messed me up even more.
 
J

Jan

Location
Preston, UK
That's terrible Sashaz. I hate taking tablets for fear of what it's doing to the rest of my system. I'm due to see my consultant soon in a couple of weeks but I see it's not my usual guy. My biggest dread is that he's going to be a textbook guy. You know the sort, you have this disease, therefore you will take this medication, regardless of the consequences. My other guy used to at least listen to me and we managed to compromise.
 
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