Have to stop Imuran

[FrozenGirl]

So me and Imuran have been have a crazy time for the last year. I started at 50, not many side effects but little actually effects, increase to 100 at 1.5 months, brief dip in white counts, stopped for a week and back on. Fine for 2 months later than another white count drop, down to 50, counts went up. Back up too 100 , Remi started. And it went on. I would be good at a dose for months, anywhere from 1-5 months than a sudden drop. Last month k dropped to 25 and after a month lf that my white counts are still low so my docs called and said just to stop taking it.

It is understandable but confusing why it happens randomly despite long term stability on a dose. I'm weirdly kinda sad about it but also scared Remi wont work as well without it as I'm on every 4 weeks already but still having some symptoms.

Anyone had low white counts and have to stop. Were you able to go on again or not? I have seen lots of people with liver issues but I feel like I should be this immunosuppressed by such a low dose.

 

[Cross-stitch gal]

I was on Imuran (Azathioprine) for a bit. It seemed to work for me, but my doctor at the time took me off it saying that my counts were too low. That's when we convinced her for me to go onto Pentasa. I haven't tried to go back on Imuran since then. But I believe if it came to, my current doctor would try me on it again to see how I do.

 

[alex_chris]

Anyone had low white counts and have to stop. Were you able to go on again or not? I have seen lots of people with liver issues but I feel like I should be this immunosuppressed by such a low dose.

I have been on azathioprine (imuran) for quite some years. While my leukocyte count fluctuated over the years (anywhere between 3.9k to 5.0k per micrometer), there was never a steep fall. Of course many years back, I had steep rises during flares - which is why you take aza in the first place, to suppress these immune system reactions.

It is understandable but confusing why it happens randomly despite long term stability on a dose. I'm weirdly kinda sad about it but also scared Remi wont work as well without it as I'm on every 4 weeks already but still having some symptoms.

Every body is different, the things I can come up with is that your immune system is actually reacting to your Crohn's or infections and tried to go up during the time you take a higher dose, which means at that point the suppression works and you end up with say 4.5k per mcL. But then during times you are good, the WBC count falls too fast.

My question would be, do you have records on what the fluctuations were over time?

 

[FrozenGirl]

Well I don't have records with me but some of the notable numbers:

Jan 2014-started at 50
Feb-continued at 50, stable white count of 4.5
March-went up to 100-count dropped slightly to about 4.2 but not super concerning
April-100, stable WBC
March, 100 WBC drops to 3.6 off for a week and resume 50 then 100
April, Stable at 100
May, Increased to 125, started Remi
June, Stable apox 4.2 at 125
July, Stable
August, Stable still but increased disease activity
Sept-Major drop to 2.8, immediately get off Imuran and weekly bloodwork for 3 weeks, WBC went back to normal and resumed at 50
Oct-Jan 2015 I was stable at WBC of 4.3

Then start of February I dropped to 3.6. I dropped my dosage to 25 and after 3 weeks was still at 3.7, my doc was comfortable with me staying that low especially since the dose meant there was no reason it should be that low so I went off kt

 

[alex_chris]

ok, I see. the 2.8 drop definitely was worrisome.

3.6 and 3.7 is ok, but still low.

Really sorry it is fluctuating that much, that ain't good. It probably really made sense to stop aza then. 2.8 sounds dangerous...

 

[FrozenGirl]

Yeah. I kinda get why but I don't understand why it is that low on only 25. Ugh. And now I'm scary I will get Remicade antibodies or flare up.