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Do I go on Azathioprine or not?!

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Posted 6/7/2010 3:44 AM (GMT 0)

Went to my GI earlier this week for my "check up".  Have been having symptoms of a flare off and on for about two weeks.... no blood but mucus, lots of gas, bouts of diarrhea (the day of my appointment I almost missed the ferry because of so many trips to the bathroom) and lots of joint pain.  And TIRED!!!! 

Back in February, when I had my scope, my GI told me that I am a candidate for azathioprine as I am classified as steriod dependent.  And now, since I am showing signs of a flare, he suggested that I start on the aza because it takes up to three months to kick in.  I am already on the maximum dose of Pentasa and I also use suppositories so there is no room for adjustments.  He sent me home with the lab requisition for all the blood work and a prescription and has left it up to me to decide. 

I have done a lot of reading on this drug and I am a little concerned.  I have read as many posts as I can on here, but honestly, I don't have the time to find and read them all.  I know that prednisone has nasty side effects and it is a dangerous drug long term.  But I am concerned about some of the posts I have read about azathioprine and some of the information I have read on the internet.  My GP has been away for months and I don't know when she will be back.  I really need to talk to her.........

If any of you are on the drug, can you please tell me your experiences with it?  Do you stay on it indefinitely?  Have you had bad side effects?  Do you really need to stay out of the sun?  Can you drink alcohol?  I know that not everyone will experience side effects and I really have to make my decision based on my own situation.  Right now, I want to wait it out and see what happens.  But if I wait too long and do go into a flare, I will be on both prednisone and azathioprine at the same time to get things under control......

What do I do!?!?!?!

Posted 6/7/2010 3:52 AM (GMT 0)
I was on azathioprine for a short time but I had to go off it because of elevated liver enzymes. I think if you have your bloodwork monitored regularly (I was going every 2 weeks) the chances of actual liver damage from the drug is minimal because it's caught right away. I didn't have any other side effects from the drug, but I was only on it for about 2 months. I guess you have to weigh the risks and benefits. It may work really well for you, and being in a flare isn't exactly great for your body either. Hope this helps :)
Posted 6/7/2010 6:01 AM (GMT 0)
BCGirl,

I have been on Aza for right at 2 years. One of the nurses at my GI's office gave me this big run-down on all the risks associated with Aza ... made me pretty nervous - things like: avoid sick people (I have three young children, not easy to do), wear face mask when flying in an airplane, avoid crowds, etc. And probably the biggest one, use birth control and do not try to have a baby while on the medication.

I later consulted with my GI at a subsequent appointment to which he informed me that a lot of that was "overblown" but they are required to present that worst-case scenario. The pregnancy issue and the concerns regarding elevated liver enzymes though are real and very serious.

In my own experience, none of the things described above have been a problem for me. I survived through all three of my children having the Swine Flu, I've flown in an airplane many times with no face masks, I've been to Disneyworld as well as crowded concerts and sporting events.

I realize that not everyone's experience will be the same as mine, but the picture is not always as bad as it is often made out to be.

My $.02.
Posted 6/7/2010 11:53 AM (GMT 0)
As to your question it's a very personal one.  I was put on Imuran or Azathioprine a little over a year ago.  I was on Asacol/Prednisone (on and off) for 11-12 years.  My UC spread to have pancolitis and I was flaring constantly.  Prednisone after a while wasn't touching it.  I was put on Azathioprine and have been doing very well on it.  No side effects, all good blood work, no problems what so ever.  I went and saw about 5 GI docs and all said Imuran had a good safety record.  One GI doc has his daughter on it for about 12 years for Chron's.  The way I look at it is that you have to find GI doc that you trust.  He is very well qualified and works at one the best teaching hospitals in the country.  He said that the GI clinic where he works has about 1400 patients taking 6MP or Imuran and he is unaware of any of them having any type of complication assuming it works for them.  Meaning if there is a problem most people will know right away but for those that it works it works well and it can for many years. 

In closing I have never gotten more sick because I was on it.  In fact I don't think I am taking any meds at all, no side effects.  It has put me in remission and reversed my pancolitis to just a couple of small patches that were noted last October.  I am having another one this fall and he expects to see a completely healed colon. 

Hope this helps.

MyUC

Posted 6/7/2010 12:39 PM (GMT 0)
I have been on 6mp for 3 1/2 years and it's similiar to Aza. I was terrified too at first when I started it. It took me 3 months of heavy flaring to make up my mind. I have a love/hate relationship with this med. I don't have the proper text book result with it but it is keeping me out of severe flares at least. My body just can't metabolize it correctly.

At first, I had horrible fatigue, slight headaches and slight nausea. After my body got used to it - around a month - those side effects went away. And then after being on it for about 3 months, I started losing some hair, but that resolved itself as well. What you read on the internet is designed for people that are using this med for cancer treatment or organ transplants. We take such a minimal dose compared to them.

I find that when I am out in the sun, I get overheated more quickly and I start to feel weak and nauseas but if I limit my sun exposure then it's not that bad. And yes, I do drink while being on 6mp. I am not a daily drinker but I do have a couple of drinks on the weekends. I am not a big drinker to be honest - it messes with my Uc a bit. I've even had my liver checked after having a bit too much to drink at a birthday party once and everything was fine (I will NOT make a habit of that though - the hangover alone made me learn a lesson! lol).

No one can make up your mind for you. This is something you will have to come to terms with yourself. Whatever you decided, good luck and know that we are here for you anytime.
Posted 6/7/2010 1:24 PM (GMT 0)
I was on it for 3-4 months- 150mg. My doctor pulled me off because my white blood cell count went down. It has come back up and he has put me back at 50mg to try again...because it was working well.

I'll keep you posted, but they do monitor you every 4-6 weeks..and should catch anything serious early enough. The GOOD thing is, if you ever feel like you don't want to take it anymore, or are uncomfortable with side effects, you can stop anytime. I just think of it as filling the gap until they find a cure.

Good luck with your decision. Sometimes being sick one way is better than being sick another. Hang in there - hopefully we'll get a cure soon.
Posted 6/7/2010 1:54 PM (GMT 0)
Thank you all for your replies.  I know that the risk increases with the dose and the dose I would be on is very small compared to what the dose is for a transplant patient.  I go through stages.  One day I think it's fine, the next day I panic.  I want to stay on the safest drugs (Pentasa and Salofalk) for as long as possible but I also don't want to wait too long and go into a flare and end up on Prednisone again. 

And, although I am not a big drinker as a rule, summer is coming and every weekend in July is booked with a wedding, a family reunion, a Music Festivals, and a 40th B-day.  Pretty sure I will be imbibing  tongue   This month I have lots on the go as well and we are starting major renovations at home.........  I think if I can stay reasonable calm about everything and get lots of sleep I will be fine.  But I know that my flares are directly related to stress, lack of sleep and frequent use of alcohol.  The alcohol is easy to control but I don't seem to have much control over the other two........

Again, thank you all for replying.  I will let you know how it all turns out. 

Posted 6/7/2010 2:01 PM (GMT 0)
I think Aza and 6mp at dosages for UC patients is far safer than any maintenance dose of prednisone. The problem with prednisone is that you feel good on it but once taken off is when you can notice the nasty long term side effects. I would take Aza or 6mp any day over prednisone. Just my two cents and I have been there and done that.

Sue
Posted 6/7/2010 2:59 PM (GMT 0)
I just started 6mp and I haven't noticed too many side effects. I should have started it a few months ago when Asacol stopped managing my flare. My doctor kept mentioning it and I kept saying, we should try this/that, and I put it off and now I am stuck taking prednisone a lot longer than I would have been. There are no guarantees that 6mp will help me but at least I think it is a step in the right direction for now. It could be easier than Asacol considering it's a once a day medicine but I am not sure if I can stop Asacol forever. I hope it helps. It is a pain because I have to get frequent blood work for the next few months but if it works, I will be thankful.
Posted 6/7/2010 3:47 PM (GMT 0)
I was on it for a year or so. I never avoided the sun. I am not a big drinker but I do when I play golf. No difference on or off of the stuff in those areas. I didn't get any more sick than usual. Blood work and white counts didn't change. Unfortunately it really had no affect on me at all so I went off of it.
Posted 6/7/2010 3:50 PM (GMT 0)
I have been fine on Imuran. I do heal a little slowly sometimes but if I just take care of myself I'm fine. My bloodwork is always good too. I wouldn't drink too much, but occassionally you should be okay. Not that it's great for your colon lol. I can go out in the sun and so far I'm fine. I would wear sunscreen though (I often give good advice but don't always take it). The cancer risk is generally for people on higher doses for organ transplants. Just remember to get your bloodwork done. Also maybe you should ask for enemas in place of suppositories?
Posted 6/11/2010 7:27 PM (GMT 0)
I've been on it for 7 days. and couldn't be sicker with my flare. of course doctors say it takes a month to three months to work. I think I'll be dead by then if it takes that long. I really just want surgery. only problem is not having insurance.
Posted 6/11/2010 7:39 PM (GMT 0)
I will be wathcing this thread as I am pondering the same thing cause of my frequent flares..although I am not in a real bad one now I flare pretty often and want my life back badly.
Posted 6/11/2010 9:14 PM (GMT 0)
I was on 150mg for a few weeks when I developed serum sickness. The docs (multiple) aren't sure whether or not it was the Imuran alone, or the Imuran in combination with Remicade. Having tried to go back on the Imuran with the same reaction, though, we know it was definitely involved. Apparently, my reaction to it is rather rare. Symptoms: fever (103-ish), chills to the point of strong muscle spasms switched off with sweating, rash (legs/back/chest/face), and severe pain in both of my knees (acute arthritis). The pain in my knees, along with the fever, was bad enough to land me in the ER twice, once having to be dragged out of bed by the paramedics on account of not being able to move.

Both times this happened I was treated with large amounts of steroids (60mg solumedrol every 8 hours until symptoms subsided, which actually happened pretty quickly) and that knocked out the reaction (though it came with its own less painful side-effects).

Again, according to my GI doc, the other GI docs at his clinic, and the other doctors I consulted with in the hospital, this is not a reaction they see frequently with Imuran. Supposedly, most folks do well on it, though it does take a while (several weeks) to help get you into remission (again, just regurgitating what my doc has told me).

As you'll probably see me become a broken record on; if your doc thinks it's best, you should probably do it. (With the caveat of, if it's a doctor you trust and have faith in.) And as PushingForward mentioned about, it's not a drug you need to ween off of, so if you react poorly or have any trouble with it, you can stop anytime. I did.
Posted 6/11/2010 10:33 PM (GMT 0)
Yes for me it took about three weeks. You really just have to try it because we all react differently. And while it takes longer to be effective, I think you'd see side-effects sooner. And if one of those is nausea or fatigue, I think taking it at night will help.
Posted 6/12/2010 2:21 AM (GMT 0)
I started 6mp in February when I was in the middle of a bad flare...I was on pred as well at the time and my doctor put me on due to me being on steroids I think 3 times in the past year.

I can tell you, pred is a crapload worse than anything azathioprine will do to you. In terms of side effects, the only problem I've really had is that I bruise more easily now. Meanwhilie, the pred made me feel absolutely horrid, not to mention the effects on my interpersonal relationships.

That being said, I cannot stress the importance of regular bloodwork if you do go on. It will help you catch any problems before they become big ones.

As for alcohol, I drink a moderate amount (generally splitting a bottle of wine with the boyfriend on the weekends) and it hasn't negatively affected my bloodwork. My doc did tell me not to drink for my first few months of treatment, though.
Posted 6/12/2010 1:26 PM (GMT 0)
My doctor feels the same as suebear - he said long term pred usage (even if it is off and on) is much worse for you than Imuran. I am stating in a few months after my baby is born. I have only been in a few really bad flares but I seem to flare to some extent the majority of the time. I cannot reach and stay in remission - I almost alway have some inflamation so I have a stubborn case. That is why I'll try Imuran. I am looking forward to trying it!
Posted 6/12/2010 3:05 PM (GMT 0)
That's the spirit. If you're scared of it you'll just notice all kinds of little things that may have nothing to do with it... and really if you're optimistic I think everything works better. =)
Posted 6/12/2010 5:26 PM (GMT 0)
Again, thank you everyone for your input.  I am still "draggin my heels" as someone (another doctor) said to me at work.  I don't have a problem getting the bloodwork done as I work four days a week at a hospital so it won't be an inconvenience at all. I think I am just worried about having horrible side effects right in the middle of a busy summer and that is stupid. What's more important?  My health or having fun?  Staying out of the sun will be impossible though (UV sensitivity on aza) as my whole summer is spent outdoors either on the boat or the beach, camping, hiking........ (Ya, I know, poor me tongue ).

And I guess I just want to stay on the safest drugs possible for the longest time possible.  I am noticing that lately I am always having to go to the bathroom, have lots of gas and mucous, and odd stomach pains.  Is it the early stages of a flare?  Don't know.  I kind of think that even if there is no blood, I am always in a very mild flare........I just have so many questions! 

I guess I just want someone to tell me exactly what to do.  Do I take the drug now, giving it time to work, and head off a major flare and in doing that avoid prednisone for the third time?  Or do I wait until I start really having a major flare, go on both prednisone and azathioprine? Oh, if it were that simple *sigh*

Tired of UC impacting my life though.  I try not to think about it for the most part, but when you always feel like you have to go to the bathroom, it's hard not to.  I did so well for so long and I am disappointed that it seems to be getting worse and more frequent instead of better and less frequent........

Posted 6/12/2010 5:33 PM (GMT 0)
I think now would be better honestly... I took Asacol until the Aza kicked in, then tapered off the Asacol. I did fine. And you can wear sunblock. I think you might be happily surprised if you start to feel better =) Course, that's just me, haha
Posted 6/18/2010 1:24 PM (GMT 0)
BCGirl - If you are steroid dependent then I would highly recommend that you give AZA a go.

I have been on aza for 10 years now, so I am very experienced with it.  Yes, there are possible side-effects, but this is the case with every drug. And the side effects are nothing compared to the appalling side effects of long term pred. I have also been on pred for 9 years so I know all about them too, lol.

I got relatively mild side effects from the aza - occasional fatigue, low white cell count on rare occasions (these will be detected during your regular bloodwork). Sometimes I felt nauseous but only if i took it without food. So, always take it with a meal.  It was the aza that put me into remission when nothing else would. And I had the worst UC that landed me in hospital for 4 weeks.

I made the fatal mistake of getting complacent when I went into remission, and i stopped taking the aza - 8 years ago. and I have been in some sort of flare ever since. And the worst part is - going back on aza a second time did not work. So, if it works for you, please stay on it!

You will need to have a TMPT test to determine the correct dose for you. I weigh 59 kg, and I take 125mg of daily.

Hope this helps

Take care

 

Posted 6/18/2010 2:37 PM (GMT 0)
I agree with ElephantPipe and would start it now if I were you. Think of it this way - you should be careful not to get too much sun anyway -whether you are on the medication it or not. Skin cancer could be even worse than UC! If taking the drug makes you more aware of the need for sunscreen and hats that is a good thing not a bad thing! :)
Posted 6/18/2010 6:10 PM (GMT 0)
BCGirl:

I just wanted to day that I am very active and I am always in the sun and I take Imuran.  I have never had a problem with that whatsoever.  Also I occasionally drink, socially on the weekends and it also has never been a problem.  Again it's a personal choice, only you and your doctor can make the right decision but so far Azathioprine has put me into a solid remission with my life where I want it.  I have lots of energy, only go maybe once to twice a day (bm) and can eat whatever I want.  I don't why people are posting blood testing every 4-6 weeks.  My understanding is that most docs request every 3 months, that is what I do.  I have another colonscopy coming up this October and my GI doc expects a completely healed colon.  Remember my colitis was really bad back in the day, a lot of blood loss with red hamburger looking colon. 

Good luck to you.  It's my personal opinion that you should give it a try.  Just keep us posted.

MyUC

Posted 6/18/2010 6:26 PM (GMT 0)
MyUC - I agree, my doctor said once I start it blood testing is only needed 4 times a year (once every 3 months).  I am not sure why it would be needed every 4-6 weeks unless there was a problem.  That seems a little much to me...but who knows...

 

Posted 6/18/2010 6:58 PM (GMT 0)
A littel off topic but congrats to you thatfield on your pregnancy!

MyUC

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