Still ANCA positive

[kitkatmum]

Hi everyone, regarding GPA, if I’m still ANCA positive after Rituximab and consultants now thinking about Azathioprine, does that mean rituximab hasn’t worked well enough? Didn’t ask at last appointment and there’s so much online it’s confusing. Thankyou!

[jgold]

Yes it is confusing. I think treating vasculitis is as much a black art as it is science. I was the exact opposite of you - azathioprine wasn't working well enough so was switched to rituximab, which has worked wonders. So - only your consultant can really answer your question. If you're not seeing him soon (assuming it is a him), why not e-mail him and ask?

[kitkatmum in reply to jgold]

Thanks for your help.

[Suzym2u Moderator Vasculitis UK]

The ANCA test is not always reliable as an indicator of active ANCA Vasculitis or as an indicator of current disease activity nor is it a predictor of future disease activity. In John’s case , after 15 years of immune suppressing treatment he still had a very high ANCA reading. Prof Jayne advised John that he should discontinue all immune suppressing therapy, ignoring the high ANCA. John has been in full remission for 4 years. I suggest you have a serious chat with your consultant.

[kitkatmum in reply to Suzym2u]

Thanks, that’s good to know for when it’s consultant time again.

[philtw]

I have taken rituximab whilst on azathioprine

[kitkatmum in reply to philtw]

Thanks for replying, so many questions rolling round my head!

[philtw in reply to kitkatmum]

If it helps. Steroids control your illness whilst azathioprine maintains your illness so you can come down on the steroids.

Rituximab gives your immune system a reboot that is it kills all your white blood cells and restarts a fresh on the hope they don’t turn bad

This should help you reduce your steroids hopefully

[Mooka]

Don’t get too hung up on anca results it how you feel that matters. But do ask your consultant about it. I hope he specialises in Vasculitis it makes a lot of difference.

[kitkatmum in reply to Mooka]

Thankyou

[Curedreamer]

After cyclophosphamide I started taking azathioprine and it has worked very well, not only to keep inflammation controlled but also to help with my other autoimmune illnesses (Autoimmune pancreatitis, Autoimmune Hepatitis and Primary Biliary Cholangitis). I was told to try Azathiprine and if it didn’t work then we’d switch to Rituximab.

And about ANCA tests, I’m still positive and my doctor said in some cases it stays that way.

Hope your meds work and you feel better. I’m not lucky enough to feel well yet (if I ever will!) but I’m lucky to be alive and have more time to spend with my son. Best of lucks!

[kitkatmum in reply to Curedreamer]

Thankyou and I hope you do start to feel better. We’re only at the start of all this so still feel there’s a lot of questions!

[Mooka]

We all have plenty of questions. Come back and ask away. I hope you feel better soon.

[Roxanne728]

I am in the same position you are and just started azathioprine about 2 weeks ago, with my next rituxamab infusion due in April. I have felt lousy since starting the azathioprine and felt great before starting it, but I am terrified of a serious relapse. I am due for blood work in a few days to see if ANCA is gone - but yes or no I am going to have a serious talk with the Rheumotologist about risks and benefits. I will keep you posted and hope that if you start azathioprine you will have no side effects and it will eliminate your ANCA.

[kitkatmum in reply to Roxanne728]

Thankyou, it’s all so confusing and everyone’s situation is so different . I’m seeing professor Bruce at Manchester in 2 weeks so hoping to get more answers. Due to start Azathioprine that week too . Got next Rituximab due at end of June.

[philtw]

I switched from azathioprine to methotrexate as they weren’t maintaining and I relapsed twice.

Methotrexate is a more powerful drug.

[foweraker]

I have been in remission for 4 years after taking Rituximab and still Anca positive, i have been off all meds for 4 years

[kitkatmum]

Thankyou, that’s encouraging to know.