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Posted 5/10/2012 8:10 PM (GMT 0)

Well hello everyone!  It's been a very long time since I've visited here.  I guess that's good news as I have been doing extremely well.... In remission since the summer of 2010 I guess even though that was the worst year of my life emotionally.

I know this topic has probably been discussed in the past but I'm at work (shhh) and don't have time to scan to find the discussion.  Here is my question......

Is there anyone on here who has experience with azathioprine or has an opinion on its use?  My dilemma is that I was placed on this drug in 2010 by my GI and I get my blood checked every month but my GP is retiring and is never available, my GI apparently discharged me from his care, and finding a doctor is next to impossible.  I am getting a little uneasy about taking such a dangerous drug without doctor supervision.  Who is really going to care enough about my lab results?  I get a copy of them all the time but I'm not a doctor, so how am I going to know if something is seriously wrong?  And, I know the internet is full of information that should be interpreted by a doctor but some research I just found showed that of 12 people taking azathioprine in the study, 10 died!  I'm not sure if I should just stop taking this drug or what. 

Any advice would be greatly appreciated. 

I hope you are all doing well. 

Posted 5/10/2012 8:20 PM (GMT 0)
Do you have a primary or family doctor that could order/review your blood tests. It's very important that someone reviews your blood tests to check for elevated pancreatic and liver enzymes.

For many people, azathioprine is a well tolerated drug that has put them into remission with no problms/side effects. Unfortunately for me, I was not able to tolerate the drug and it gave me pancreatitis.
Posted 5/10/2012 8:23 PM (GMT 0)
I have tried this drug twice, once last year in Hungary and again in Spain this year, I can not tolerate it at all. It gives me a real fever and just about every other side effect you can imagine, I am not surprised to hear that some have died after taking it, I will never touch it again.

I am sure it must do good for others who can tolerate it, I'm sure,like me you would know immediately if it is bad for you, I certainly did. We all seem to tolerate these drugs differently, My doc gave me Clipper after I told her all my symptoms and that drug was like a miracle for me.

I am sure there will be others that say it's great, I think it's more as to whether the person can tolerate the drug rather than the drug itself, they all seem to be quite awful for this illness.

Hope you work it out anyway.
Posted 5/10/2012 8:33 PM (GMT 0)
Thanks for your input.  I tolerate the drug well but my concern is for the long term as it does increase the risk for a certain type of incurable cancer (mostly in younger males but it's still a risk). 

My family doctor (GP) is retiring and is rarely around so I have to trust that her locums are reviewing my lab results and will contact me if there is anything alarming.  Once in the beginning, her locum signed off as reviewing the results but one of my liver enzymes was really out of whack!  My regular doctor caught it two months later!  One locum did pick up on the out of range RBC and MCV levels and came to see me in my office (I work at the hospital) and she ordered more tests to check for other things.  I appreciated that very much.  But, due to a serious lack of doctors, we have a high number of locums passing through so we never have a constant. 

I am going to try to talk to my husband's doctor to see if he can somehow squeeze me in somewhere to have a discussion about my fears. 

Oh wow! My regular doctor just walked into the hospital.  Maybe I should go tie her down!  Wish me luck.  She's kind of a bear.  LOL

Posted 5/10/2012 9:17 PM (GMT 0)
Hope you catch her.

I don't think that you would have to be on this drug for years, in my experience it has just been until it did it's job and if it didn't bring any relief they tried another until they found the one that cracks it.
Posted 5/11/2012 2:20 AM (GMT 0)
I do fine on it and I've been on it for a long time. The only time my liver enzymes got out of whack was when I was sick. Do you remember if you were sick when you had that blood drawn and it showed your enzymes were messed up?

I just plan on taking it until it stops working, because I anticipate it probably happening someday.

I would also ask a GP. Good luck!
Posted 5/11/2012 4:07 AM (GMT 0)
I'm also one of the lucky ones who tolerates this drug very well.

I plan on being on Imuran for as long as possible. Once it stops working, hopefully there will be other drugs or perhaps even a cure! But if not, surgery I guess.

Good luck.
Posted 5/11/2012 2:16 PM (GMT 0)
Hi - I know what study you are referring to. It was not 10 out of 12 people taking Imuran that were studied. It was 12 people who were taking Imuran and ALSO had acquired a T-cell cancer. Of the 12 who acquired cancer 10 did die which is terrible. BUT you have to remember that all 12 had cancer already so it was not that 10 out of 12 who were simply taking the drug died it was 10 out of 12 who were taking the drug (and several were also taking other medications as well) and who had t-cell cancer who who died. Hope that makes sense.

There is a possibility that Imuran increases our cancer risk but so does just having UC. I am not down playing the medication but I think the information out there on the internet can be deceiving. You are right in that a physician should be able to give you more information and explain it. You do need to have your bloodowork monitored closely while taking this medication. I hope you find another physician soon.

Best of Luck!
Posted 5/11/2012 4:36 PM (GMT 0)
Again, thank you everyone for your input.  Yes, I realize that information on the internet is easily misunderstood and that everything needs to be put into perspective with all of the information.  I understand the risks associated with UC and I also understand the risks associated with azathioprine (Imuran).  My fear is that without a regular GP looking at my lab results every month, something will get missed.  And I firmly believe that my GI who prescribed the drug should also be responsible for monitoring my results.  Also, without a regular doctor I am a little worried that if something does crop up, I could easily be lost in the system.......although I can be very pushy and working in a hospital does have its advantages for maneuvering through the system.  LOL.

I guess I just feel that if I can maintain remission with as few drugs as possible, that is the route I would like to take.  When I was prescribed azathioprine in 2010, I had been struggling for almost two years and had been on and off of prednisone for over 13 months.  Since going on azathioprine, I have been doing fantastic and have made a lot of positive changes in my life so I think I will be fine. 

Thanks for letting me use all of you as my sounding board. 

Posted 5/16/2012 2:27 AM (GMT 0)
I totally agree with you about using as few drugs as possible. I would love love love to not have to take Imuran but it is the only thing that works and I really hate pred anyway.

I also agree that your prescribing GI should be responsible. Yes working in a hospital helps - I work in a hospital system too. Being pushy helps too :)!
Posted 5/16/2012 5:29 PM (GMT 0)
Imuran has worked great for me for over 8 years.
I was almost pred-dependent before finally trying imuran. Since the, I've had less flares, no side effects at all. Find the smallest effective dose and stay on it!
Posted 5/16/2012 7:50 PM (GMT 0)
I was unable to pin my doctor down the other day but I did get in to see a locum doctor and he was very good.  He was honest in that he didn't know much about the drug but took the time to go and research it a bit while I waited.  When he came back he said that the risks of taking azathioprine and developing lymphoma are very small but the risks of developing colon cancer when UC is uncontrolled are very high. I know about that risk for sure.   He reassured me that if anything on my blood work was alarming that the lab would contact a doctor in the clinic directly, even if my regular doctor wasn't around.  I guess I will just hold out a little longer before making a decision on this.  I do tolerate the drug well and I seem to be doing quite well so why rock the boat right?  tongue
Posted 5/17/2012 3:20 PM (GMT 0)

Monthly blood tests aren't such a problem, you get used to them. I ha a lot of issues at first with who was looking after my blood, hospital, GP an such but im in the UK.

The drugs itself, no issues. I should have always worn sunscreen, now i have more of a reason to. Lost a couple fingernails due to an insignificant knock turning into an infection, not fun! And, shhh, I get thrush from time to time and never did before. But only superficial stuff like that. But I think its just a case of getting used to things like that, avoid people with colds and you get free flu jabs.

At first it made me tired, but doesn't now. Met a few people on it, it doesn't phase any of them.  Honestly I would recommend it.

Posted 5/17/2012 5:09 PM (GMT 0)
"research I just found showed that of 12 people taking azathioprine in the study, 10 died!"

Not calling you a liar, but that just doesn't sound right.  They would have pulled that drug ASAP if the death rate was that high.  

Posted 5/17/2012 7:00 PM (GMT 0)
RE the research I found......

I understand that studies need to be interpreted with ALL of the information together.  12/10 with UC did die but you have to read further into the study to see the facts regarding those deaths.  It does not mean that all of the deaths were necessarily related to azathioprine directly.  The footnotes need to be read.  Not sure how to paste information on here so forgive me if this comes up all whacked out............

TABLE 1. Cumulative Cases of HSTCL Associated with Selected Immunosuppressant Use† Reported to the Adverse Event Reporting System, the Published Literature, and HSTCL Cancer Survivor's Network as of December 31, 2010

Product Indication for use Sex Patient age in years Duration of use Concomitant agent Outcome
Infliximab§
N=20		 CD (17), UC (3) M (17)1, 2, 3, 4
F (3)5		 Median =30,
Range=12 to 74		 Range: 1 dose to intermittent use for 7-8 years(doses not specified) (19), not stated (1) 18 (azathioprine or mercaptopurine)* Death (17)
Infliximab/ada-limumab§
N=5		 CD (4), UC (1), M (5)6, 7, 8 Median=29
Range=21 to 58		 Infliximab: Range: 2 doses to 6 years (doses not specified) (5)
Adalimumab Range: 3 doses to 13 doses (n=5)		 4 (azathioprine or mercaptopurine; 1 of the 6 pts also received 3 doses of natalizumab)   Death (4)
Etanercept§
N=1		 PS [9] Not stated Not stated Not stated Methotrexate, cyclosporine Not stated
Adalimumab§
N=2		 RA F (1), M (1) 61, 70 1 yr, 4.5 months 2 (steroid [1], methotrexate [1]) Death (1)
Certolizumab
N=0		 N/A N/A N/A N/A N/A N/A
Golimumab
N=0		 N/A N/A N/A N/A N/A N/A
Azathioprine#§ N=12 Hepatitis/UC (1)10
CD (6)11, 12, 13, 14, 15, 20
UC (5) 16, 17, 18		 M (8)
F (1)
Unk (3)  		 Median=21 Range=15 to 45 (n=10) 4-6 yrs to 17 yrs (12) Steroid (4),
mesalamine (1),
none rpt (7)		 Death (10)
Mercapto-purine#§
N=3		 CD (3)19, 20 M (3) Mean=24
Range= 18 to 33 (n=3)		 3 to 8 yrs (3) None rpt (3) Death (3)  

Azathioprine does come up with a "Black box" warning about the risks of lymphoma but again, the risk is small compared to the risk of colon cancer........

Posted 5/18/2012 1:42 AM (GMT 0)
I believe the above study is talking about mortality among people who contracted lymphoma while taking the immunomodulators. I think the risk of contracting lymphoma while taking imuran AND remicade is something like 0.08%. So it is likely that you will die if you get HSTCL and are taking immunomodulators but the risk of getting HSTCL is so low that it's not worth having uncontrolled UC just to avoid taking them.

You are right about needing medical supervision. Make an appointment with a new GI and GP now (if you haven't already). Tell new GP about your concerns about the drug/labs and ask them if they are comfortable (i.e. feel qualified) to monitor you until you can see new GI. However, I can't see how a GP (particularly if they are MD/DO) would be unable to monitor you adequately. Usually, lab results come to the dr with a huge "ABNORMAL" on them if the results are bad.

When did your old GI discharge you? Some states (maybe all) have laws that state drs must provide 60 days of medical care after discharge to allow patients time to find a new dr.
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