Testing for azathioprone

[Gracey888]

Going later today to get full blood count and blood test for enzyme to take azathioprone for the first time. (Been awake since 4am / thanks steroids and anxiety)! Unsure yet if I have the right enzyme for it. Kind of do and don't want to have it, or it's infliximab discussion. Not taken this type of drug before and quite worried about long term side effects. Been on and off oral prednisone since 2010, but latest consultant thinks we've run out of options on using steroids. Currently on prednisone suppositories and they're not working like they have on the past.

[willow24 Administrator]

I was never checked for the tpmt enzyme, it must depend on which nhs trust you belong to. You need regular blood tests on azathioprine anyway to make sure your not experiencing side effects on your blood and liver. azathioprine worked for me for years then I was swapped to mecaptopurine (a metobylite of aza) due to nausea, and again took that for years.

Infliximab was amazing and I was doing really well for 6 years I had drug induced lupus and had to stop it.

hope you can find the right med for you.

Good luck x

[Hidden in reply to willow24]

Willow, can you remember how long Infliximab took to work for you?

[Gracey888 in reply to willow24]

Thanks for replying. What treatment are you on now? Yes if I can have aza, I've been told I'll need bloods every two weeks for 2 months, then every two months.

Pretty anxious as I have lots of secondary autoimmune problems. Being tested for rheumatoid arthritis & have many lupus markers. Has the lupus reversed now if you don't mind me asking?

X

[SORRELHIPPO]

I have been on Azathioprine since 2011, have 3monthly blood tests (after the initial much more frequent ones) no trouble with it at all. I do however miss the steroid highs I used to get. These made for a much quicker recovery from a relapse!! I have had gentle probs, with slight Crohn's relapses, but not had a full blown relapse since using this med. so consider it worth the change. Good luck

[Lilact in reply to SORRELHIPPO]

I have been told to go on azathioprine but I am so scared font know what to do my bloods been tested and ok to start

at the mo I am on 10 mg of steroids and in a flare please I need more reassuring of azathioprine ie hair loss etc

Steroids have given me osteoporosis

[Gracey888 in reply to Lilact]

I understand your fear, I have osteopenia and hair loss / change from long term steroid use. I didn't do well on the azathioprone and had to change over after a few days to mercaptopurine. They then started me on it much lower dose at first than the aza and I'm half way to my therapy dose now. I seem to be ok hopefully I'll take the full dose in about 10 days and tolerate it. We all react very differently and I hope you are ok on it. Let us know.

[Lilact in reply to Gracey888]

Thank you for your reply Grace I feel like I hve come to the cross roads

[Gracey888 in reply to Lilact]

Yes me too, I'm not allowed to really take anymore steroids and nothing has got me under control the last two years. Just got sicker and sicker. Here's to our getting lives back.

[Gracey888 in reply to SORRELHIPPO]

Thanks Sorrelhippo, had to change to mercaptopurine in the end a couple of weeks ago. Found I reacted very badly to the aza! So glad to hear it's worked for you. Here's hoping I get my life back in a few weeks! Sadly my body hates steroids now and I don't get that high anymore, the complete opposite and I'm currently using a walking stick as it's messed with my mobility! Hoping it's temporary but I had some numbness and nerve tension before. Now to see a rheumatologist again!!! The joys! Thanks and good luck to you too.

[willow24 Administrator]

Hi, yeah lupus ok, though still get skin lesions at times, even after stopping humira (another iologic I tried after infliximab). I also have RA, currently on methotrexate (been 10 weeks now) but crohns is very unstable. Just about to work last night shift then I have 2 weeks off to rest and hopefully get on top of it.

Good think is with the autoimmune probs is that the meds are the same. it can take up to 3 months for them to get to therapeutic levels though, so dont be disheartened if you dont see an improvement straight waway

[CONSTANTGUTACHE]

i take mercaptopurine, i had tried everything and my life was on hold, now i have a life,it worked and apart from one bleed (that was my own fault i allowed my body to dehydrate) i have to be careful around people who may be ill, a worry because i work in care but i manage.

[Gracey888 in reply to CONSTANTGUTACHE]

So glad to hear that you're doing well on the mercaptopurine. I was take off the azathioprone two weeks ago as I was very very sick on it. So started very low on the mercap and now tolerating a gradual increase. Really hoping that it works. So want my life and to take up my work again.