Got to stop my azathioprine... Gutted!! - LUPUS UK

LUPUS UK

32,249 members28,608 posts

Got to stop my azathioprine... Gutted!!

Sara_A profile image
9 Replies

Hi,

I've recently had my dose of azathioprine increased and was finally after 8 months starting to feel better. Had my monitoring bloods done today and my liver enzymes have shot up in the last 2 wks (since my last test) to 5 times the normal range! So the gp says I need to stop it and have my bloods rechecked in a couple of days.

Feel so gutted at having to stop it now when I've started to feel better.

Has anyone had this and been ok and able to continue the azathioprine??

Written by
Sara_A profile image
Sara_A
To view profiles and participate in discussions please or .
Read more about...
9 Replies
happytulip profile image
happytulip

Truely gutted for you! I had a great reaction to aza in that my hair grew back, my joints were better, my energy improved and my ESR was 1, yes 1!!! But I had to stop it because I have a gallbladder issue that may have been caused by the Azathioprine. I have to warn you that it did cause me to flare coming off it completely but maybe you will be OK if you are just stopping for a short time in order for your bloods to balance out, let's hope so. Good luck x

Sara_A profile image
Sara_A in reply tohappytulip

Hi, can I just ask what they put u on instead of the azathioprine?

happytulip profile image
happytulip in reply toSara_A

Mycrophenalate. So far so good apart from an odd sandpaper feeling on my tongue. I don't get the nausea that I did with aza although I am still on a very low dose of Mycrophenalate. I'm looking to increase it on Monday if my bloods are ok.

Sara_A profile image
Sara_A in reply tohappytulip

Nothing ever goes smoothly! Ha. It's like 2 steps forward and 20 steps back!

Ok I was thinking that might be the next option from what I've read.

My joints are bad today just shows actually how much it was helping. Was really struggling before it and just didn't want to go back to feeling like that again, but will try stay positive!

happytulip profile image
happytulip in reply toSara_A

Do stay positive. I had a terrible flare when I had to abruptly stop aza. I'm still in that flare but I can now at least move. When I stopped it I was pretty much bedbound and had to have a stab of 80mg depo in my butt! I'm still off work and very sore but better than I was.

Since starting Mycrophenalate I have noticed some improvement in my hinges (joints) and I'm hoping that the pain will reduce as I increase the dose.

It's so gutting when you have to mess with your meds. I really know how you feel. Stick with it and know it will get better. It sounds like you are now where I was about 4-6 weeks ago. Stay strong and be kind to yourself x

Jess_doyle profile image
Jess_doyle

My wbc dropped dangerously low , infection would of been very bad doctor was surprised I wasn't sick lol now gonna be off it till hospital appointment 29th November. No side effects yet being off it. Have heard it can take months to get out your system so not sure what to expect or start something new, these are hard drugs it's balance.... what's making ur inside worse drugs or lupus, RA 😕

Sara_A profile image
Sara_A

Just an update... So my liver enzymes are over 300 now which is apparently very high!

So looking like no more azathioprine for me! Am so gutted as feel like am back to square one and feel rough again with joint pain and also now have these raised liver enzymes.

I really didn't want to stop the azathioprine because it had started to make me feel so much better!

Don't let this put u off trying it tho, this is why they monitor ur bloods, and it did make me feel much better!

Will just wait and see now what happens about my liver and what they will try next!

shaney2510 profile image
shaney2510

I'm. in hydroxychloroquine it works better for me. gentle on than lIver. speak to your doctor. good luck

Sara_A profile image
Sara_A in reply toshaney2510

I'm on hydroxychloroquine already but it wasn't helping enough so needed something additional. My liver is back to normal now so they are going to try the aza again!

Not what you're looking for?

You may also like...

Azathioprine dose

I have lupus and aps and due to a flare that's lasted 10 months the rheumatologist started me on...
Sara_A profile image

Azathioprine

Hi does anyone have problems with azathioprine? I've had lupus 8 years and take a number of...
Polly312 profile image

Azathioprine: not sure

Hi I've just, well for the past week, started azathioprine at 75mg. Thankfully, so far, no GI...
Amakura profile image

Methotrexate- a better option than Azathioprine? What other options are they with less harm for lupus people?

Hi, I'm new here and I suffer from Sjögrens syndrome and lupus, and I've been taking 200 mg...
Kahina profile image

Azathioprine and pregnancy

Hi all, I’m taking azathioprine 50mg twice a day and hydroxychloroquine 200mg twice a day for my...
Sezvic profile image

Moderation team

See all
Debbie_kinsey profile image
Debbie_kinseyAdministrator
chelseawong profile image
chelseawongAdministrator
michaellasmith profile image
michaellasmithAdministrator

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.