Have to stop Azathioprine: Ive been told to stop my... - LUPUS UK

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Have to stop Azathioprine

Shann07 profile image
11 Replies

Ive been told to stop my aza and plaquenil immediately as my white cells are so low. My blood work will be repeated in 1 week. Has anyone experience of this and will I get to continue on aza as it was helping my symptoms alot?

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Shann07
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11 Replies
PMRpro profile image
PMRpro

It is difficult to say - the aza is obviously affecting your white cells badly and that puts you at a much higher risk of infection. If they recover and go higher again the doctor may be willing to try you with the aza again but he may not - you will have to ask him. It could be either or the combination that is causing the problem so they will need to work that out. I'm sure if you don't get to go back onto aza they will try something else instead.

Shann07 profile image
Shann07 in reply toPMRpro

Thanks PMRpro. I will try not to worry too much.

Bronagh2015 profile image
Bronagh2015

Hi Shann07, the same thing happened me and I wasn't allowed to have Aza again. My prednisolone was increased and I was started on Mycophenolate Mofetil, then after a few months the Pred was decreased slowly. The side effects were quite bad for a while but it has worked well for me overall. 😊 Bronagh

Shann07 profile image
Shann07 in reply toBronagh2015

Thanks Bronagh thats very reassuring 🤗

misty14 profile image
misty14

Hi Shann

I too had to come off Azathioprine because it affected my blood cell counts. Tough as it has helped you but I'm sure they will put you on something else like Mycophenolate that seems to be tolerated better.Good luck for your bloods in a weeks time, hope they've improved . Keep us posted. X

Shann07 profile image
Shann07 in reply tomisty14

Thanks Misty 🤗

favour6 profile image
favour6

Hi Shannon

It has happened to me when aza affected my liver. I was then prescribed mycophenolate. You will be fine if given myco.

Shann07 profile image
Shann07 in reply tofavour6

Its great to hear from you all that have had this experience too, so reassuring favour6!

Shan_lupu profile image
Shan_lupu

Hello! Same thing happened to me. They lowered my doses and kept an eye on me for a while and my white blood count is now at an acceptable range. It was down to a 1.2. :( Pretty low.

Shann07 profile image
Shann07 in reply toShan_lupu

Hi Shan-lupu, Yes Rheummy phoned me to say will repeat bloods next week and if improved might be able to restart on lower dose so fingers crossed!

Jess_doyle profile image
Jess_doyle

Same thing is happening to me as well for the past 2 years but they really don't want to take me off it nd put me on anything stronger, guess it's just trying to keep a good balance annoying as it is, and all the blood tests... hopefully something new will appear it's come along way.

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