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Azathiaprine (Imuran)

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Posted 6/20/2009 10:07 PM (GMT 0)

Hi all,

After much thought and fear I have started taking Azathiaprine( Imuran).

It took me a week after my GI wrote out the script to actually fill it at the pharmacy. I seeked other doctors advice, including my trusted GP that I have been seeing for the past 8 years and the message was 'take the medication or bleed to death'.

Okay so not too many choices here!!!

So I am now taking it with much fear of the side effects and my biggest fear is falling pregnant in the future- since I am 26 it will be on the cards one day- hopefully!!

Is anybody else taking this drug?

Any side effects I should look out for?

The label says keep out of direct sunlight?

If anyone could share their experiences of taking Azathiaprine it would be greatly appreciated.

Another thing I found interesting:

I asked my GI if I should see a dietition and he told me that diet does not play a role in this disease!!! Well from my experiences in the last few weeks it certainly does!!!

(Diagnosed with UC in March 2009, currently experiencing second and worst flare)

Posted 6/20/2009 10:49 PM (GMT 0)
Here is a great site with reviews from people that have taken Imuran:

www.askapatient.com/viewrating.asp?drug=16324&name=IMURAN
Posted 6/20/2009 11:35 PM (GMT 0)
Just want to let you know that I was on it for over a year and a half, and I did fine, it helped me go into remission and now being off it for 6 months, I've been fine. No bleeding or anything. My doctor didn't want to keep me on it due to risk factors of cancer. Hopefully it will work for you.
Posted 6/21/2009 12:57 PM (GMT 0)
I'm on it now. Started in January this year, so it's been about 5 months.

First of all, I always seem to get side effects with drugs. =[ Imuran hasn't been too bad... But I keep getting into these phases of not feeling well. It's happened about 3 times since I started taking it. Just 3 mini flares, but then they somehow go away.

I take my pills around dinner time, so I can pile some food on them. If I am away and won't get food for at least an hour after taking it, I tend to fall asleep. It makes me, personally, very tired.

The whole direct sunlight thing is that you should stay out of the sun. This is an immune suppressant, so they're worried that if you go in the sun, it morphs your skin, you have a higher chance of getting cancer because this drug knocks down your immune system. ((That is just my understanding from what I read of pamphlets from my doc and other writings about Imuran.))
Posted 6/21/2009 2:24 PM (GMT 0)
     I am on 6MP and have been for the past six years.  I love the sun but only stay out about half an hour.  If longer than that, my skin starts to look like alligator skin.  I am olive skinned and never had a problem with sun exposure in the past.  I do use Factor 8.  Basically, I could use the vitamin D.

     At my age, almost 63, I am somewhat concerned, but not paranoid about the long term effects of this drug.  I just want to feel well.  Right now I am in a flare again only after a seven month remission.  I am not bleeding but have terrible pressure in the rectum.

     Don't let any doctor tell you this is not diet related.  My GI says that all the time.  BALONEY.  I know certain foods will cause my ulcerative proctitis to flare.  Have to admit I cheat and then I pay the piper.  Odd thing is that when in remission, I feel so darn great!!!

     Right now all I eat for breakfast is rice cereal with Silk.  I place 1T of ground flaxseed meal on top and sweeten it a tad with honey.  I drink green tea, no caffeine while flaring.  For lunch I have been eating either Activia yogurt or Ensure (vanilla flavored).  For dinner, stewed chicken with mushy carrots and baked sweet potato (skinless).  Snacking consists of saltless saltine crackers, frozen yogurt or jello.  This is the third week I am in this flare with no worsening or improvement.  Just limbo.  Had a sigmoidoscope three weeks ago while in the beginning of the flare (which really didn't help matters).  I see my GI doctor on Tuesday for the results of the biopsy.  He did start me at 20 mgm of prednisone, which did nada, so I upped it to 30 (still did nada) but I am now tapered down to 20.  All my other meds are listed below.

Posted 6/22/2009 12:53 AM (GMT 0)
I've been on it for about two years or so I think. I've been feeling great. I'm okay in the sun, too. I don't feel sick or anything. As for the pregnancy thing, just make sure you are very careful, and plan the pregnancy, don't make it accidentally-on-purpose =p

As for the diet thing, my first GI said the same thing. I think in the beginning or during flares, it matters what you eat. Once you're in remission, pretty much anything goes I guess. Except getting drunk. Trust me, don't do that. Drinking one drink here and there is alright.
Posted 6/22/2009 4:51 AM (GMT 0)
Thank you all so much for your replies.
It is so nice to not feel alone in living with this disease.
I am experiencing some nausea and headaches but not sure what these are caused from. Also I am very tired but this could be due to my body not absorbing much!!
I am keeping a diary of all the foods and how my body reacts so I suppose it is just trial and error from here.
Posted 6/22/2009 11:32 AM (GMT 0)
hey all.. im new to this site, i stumbled over it while i was doing some researching on this topic..

im 24, i just got diagnosed with ulcerated colitis in april this year (2009) im still learning about it, but i have lived with my mother for almost 20 years who got diagnosed with crohn's disease when i was only 4 so really my UC is generic. since the end of april i have been on predinsolone starting at 50mg and trying to work my way down currently on 15mg.

my gi just perscribed me imuran, 50mg and im worried about roughly the same thing as everyone else..
i really really want my own kids, im a big family person and after reading a few pages on this topic im really not sure what to do.. ive only been with my partner for 8 months so its really not appropiate atm for us to have kids together as yet, but im really worried that it is going to be difficult for me later in life.

i supose i have been in denial for the past couple of months, i really didnt think it was that bad, but now the doc has put me on imuran im starting to believe that it maybe something that isnt just gonna go away and really its scaring me.. i know everyone says not to worry about it and not to stress as these two factors only makes it flare up but being very new to this disease myself i think it has lowed my confidence and im not the life at the party anymore, and i now just stand in the corner smiling and nodding..
i think another stress point for me is that out of all the foods wheat makes it flare up the worst, bread and pasta is a killer, and yes i have been tested for coelac and it came back negitive.. annoying enough all my fave foods in the world have like wheat in it so ive had to not only deal with this new thing thats taking over my body ive lost all my comfort food too..

im just so over it already, just hate for a few days ill feel as if nothing had happened and im happy as larry then out of nowhere i get lower back pains, and lower stomach pains and headaches and nausia, and im tired and feel weak.

sorry for having a huge sook on here, i supose im still in the "why me" stage..
Posted 6/22/2009 4:07 PM (GMT 0)
I have been taking 6 mp for five years. I am 25 and in the process of talking with doctors of getting pregnant. I went to a high risk doctor to find out about getting pregnant/staying pregnant on the 6mp. I know that I will not be able to go off of it and I was told if I go off of it and flare my body may respond to it like it did before. So, basically, I'm on for life. The doctor said it is most important not to flare during prenancy and the medicine poses risks but nothing too serious. He wanted to check the ultrasound at 20 weeks but other than that it should be just fine. It is a category D which means at risk but that's only b/c not too many studies have been done. He feels comfortable with me taking it though and doesn't think there should be issues with me getting pregnant on it.
Posted 6/23/2009 2:14 AM (GMT 0)
Oh I also want to add not to forget to get your regular bloodwork done that your doctor will order.
Posted 6/23/2009 2:37 AM (GMT 0)
Been taking Azathiaprine for about 2 months now....I was on pred but have since tapered off. I dont believe the Imuran has kicked in yet...still in a flare. My side effects so far have been a noticeable decrease in appetite which could also be attributed to the taper off pred...although I do get an upset stomach feeling...just kind of "blah" feeling after taking the Imuran.

I havent noticed anything about sun exposure but am going to try to stay out of it or stay covered. My grandfather died of melanoma.
Posted 6/23/2009 7:32 AM (GMT 0)
im still waiting for blood test to come back to see if i can take imuran.

i dont know if i want to.
i am in the process of trying to get pregnant right now. might be since i missed my period last week.
who knows.

but i am a sun / beach baby. i canNOT stay away or out of the sun. sorry.
i dont know what to do about this imuran.
i dont want to take it.
my flare seems to be getting better.
i am not nearly as bad as the first 3 weeks.... been feeling okay for a week now.
tapering pred.

should i even go there or not?
i might not need it. but i dont know
crap i cant decide.

that link with the imuran feedback from people is quite scary actually.
i like my hair and i want to keep it.
i also dont want to be tired all the time.

arragggghhh
Posted 6/23/2009 7:51 AM (GMT 0)
      Steph.  My hair started falling out when I started the 75 mgm of the 6MP.  However, I have a great solution which helped me a lot.  My hairdresser recommended Nioxin.  I use the hair cleanser and scalp treatment.  It works wonders.  My hair is fuller now than ever.  My issues with the 6MP is the low white count.  Being a former lab tech I was not comfortable with only a 2.4 WBC.  Normal is 4 - 12.  Low white counts make your body unable to fight off illnesses.  So, I lowered the dose myself to 50 mgm.  Since I have monthly CBC's we were able to monitor very carefullly.   Well, first six months sailed along fine in remission (from last year's hospital visit that is).  White count snuck up to 2.9, still not great but better.  Until last month when lo and behold it got up to 4.0 and guess what?  I flared!  Doc said my body is probably now attacking itself, therefore, he liked the low white count.  So, darned if I do and darned if I don't!  A catch 22 here.  So, here I sit suffering my second flare in only seven months and upped the darn 6MP to 75 anyway.

     Only side effect I notice this time is fatigue.  I see my GI doctor today for results of the sigmoidoscopy he did three weeks ago.  I will have another blood test nest week.

     A word to the wise about being in the sun while taking the 6MP though.  Don't stay out long!!!!  We went on a few cruises during the time I took 6MP (over six years on this) and my skin looked actually like an alligator...no lie....scary.  Good thing it went away.  Scared the crap out of me though.  You can get a real nasty burn on that stuff.

Posted 6/23/2009 9:49 AM (GMT 0)
thanks christine for the info.
much appreciated. i want to know everything before i take this stuff.
especially since im feeling better.
anytime you start to feel better, this stuff seems less 'pro' and more 'con' if you know what i mean.

oh what to do
Posted 6/23/2009 10:54 AM (GMT 0)
I took my first dose of Azathioprine / Imuran this morning. My doctor started me on 100 mgs! From what I've been reading on here, that sounds like a high dose! (and I only weight 120# so my weight shouldn't be the reason)

I hope it goes well.

I have been actually feeling good but I'm still on 20 mgs of Prednisone. I debated with myself about not taking it, but we all know that we can't stay on the 'roids forever!

Good luck to everyone thinking about the Imuran.

Jen O
Posted 6/23/2009 1:12 PM (GMT 0)
Hi all,
Tommorow will be a week since I started taking Azathiaprine (Imuran) and today I have been feeling the best I have in some time. Not overly tired, nauseous or no head ache. It is obviously too early too tell whether the drug is working for me but it was nice to not feel soooooo sick today. Even my bowel movements have lessened!! Okay so I would hate to jump the cue and feel like crap again tommorow, but I just thought I would share my positive day with you all!!
Posted 6/23/2009 9:44 PM (GMT 0)
Hi everybody, i was diagnosed with UC about 3 or 4 years now. im almost 21. anyway, i have a problem now and its stressing me out so much... I know the risks and side effects of azothioprine (imuran) including the pregnancy risk... well recently i found out that my girlfriend is pregnant... !!! ive been taking imuran for a couple years now and i still take it every day. i asked my doc about the percent chance that there is that our baby will have problems, and she only told me that the risk is much higher for a woman taking imuran than a man taking it. But there is still a risk... I know that was a bad idea. it wasnt planned but whats done is done. now we learn... I just had to share this with someone. Wut should i expect? is there anything she can possibly take to lower the risk of birth defects? and any other supportive info will be appreciated.
Posted 6/24/2009 3:24 AM (GMT 0)

Jen O said...
I took my first dose of Azathioprine / Imuran this morning. My doctor started me on 100 mgs! From what I've been reading on here, that sounds like a high dose! (and I only weight 120# so my weight shouldn't be the reason)

I hope it goes well.

I have been actually feeling good but I'm still on 20 mgs of Prednisone. I debated with myself about not taking it, but we all know that we can't stay on the 'roids forever!

Good luck to everyone thinking about the Imuran.

Jen O

Jen--I weigh 120 and take 175 mg azathioprine so 100 probably isn't really that high.

I have had good luck with the azathioprine, I think it has very minimal side effects and I had two babies while taking it. After 6 years on it, though, it seems to not work as well for me anymore (hence I have started Remicade). But I think all drugs kind of do that, where they lose their efficacy.
Good luck!
Posted 6/24/2009 4:47 AM (GMT 0)
I have been using azathioprine since February this year. The doc prescribed 100 mg. I had some of the same reactions that others have reported (especially extreme fatigue), I cut the dose to 50mg & when I next saw him he said he probably would have recommended it. He claims it is 85% as effective at that dose.

As for the hair loss, I have had the opposite effect. My hair had been noticably thinning for the past 15+ years. about 2 months after beginning the azathioprine, I started growing new scalp hair. There were lots of new hairs - very fine and about an inch long. On the down side, I may have to start shaving my legs - never have had hairy legs before:} I don't have anything else the attribute it to. Some hair loss can be caused by autoimmune problems.
Posted 6/25/2009 8:39 AM (GMT 0)

buckeyeinchicago said...
I have been taking 6 mp for five years. I am 25 and in the process of talking with doctors of getting pregnant. I went to a high risk doctor to find out about getting pregnant/staying pregnant on the 6mp. I know that I will not be able to go off of it and I was told if I go off of it and flare my body may respond to it like it did before. So, basically, I'm on for life. The doctor said it is most important not to flare during prenancy and the medicine poses risks but nothing too serious. He wanted to check the ultrasound at 20 weeks but other than that it should be just fine. It is a category D which means at risk but that's only b/c not too many studies have been done. He feels comfortable with me taking it though and doesn't think there should be issues with me getting pregnant on it.

 

Hi,

Thanks for sharing your story.

Please update your progress with this as I (along with many others it seems) will be very interested to see how it all goes for you!!

The very best of luck!!

Posted 6/25/2009 8:46 AM (GMT 0)

AmyWaffle said...

Jen O said...
I took my first dose of Azathioprine / Imuran this morning. My doctor started me on 100 mgs! From what I've been reading on here, that sounds like a high dose! (and I only weight 120# so my weight shouldn't be the reason)

I hope it goes well.

I have been actually feeling good but I'm still on 20 mgs of Prednisone. I debated with myself about not taking it, but we all know that we can't stay on the 'roids forever!

Good luck to everyone thinking about the Imuran.

Jen O

Jen--I weigh 120 and take 175 mg azathioprine so 100 probably isn't really that high.

I have had good luck with the azathioprine, I think it has very minimal side effects and I had two babies while taking it. After 6 years on it, though, it seems to not work as well for me anymore (hence I have started Remicade). But I think all drugs kind of do that, where they lose their efficacy.
Good luck!

Hi,

I am really happy to find someone who has been pregnant whilst taking Azathiaprine.

If I am not intruding too much on your personal life, can you please tell me a bit about your pregnancies?? Were they complicated? Did you have to have extra tests because of Azathiaprine? And any other information that you may want to share would be greatly appreciated.

Thanks,

Peta

Posted 6/25/2009 8:41 PM (GMT 0)
jojohernand, make sure she takes her prenatal vitamins and especially the folic acid.
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