MPO levels

[Webbyj]

Hi does anyone know what is considered acceptable

Level of MPO Anca ? Mine has gone from 0 (in remission to 4.40. Is this high? Not due to see nephrologist until April and not sure if I should go sooner. I’m currently not on any treatment and am reluctant to go back on meds.

Thanks.

[Chris-Bromsgrove]

As far as ANCA is concerned there are no threshold levels as to what is high/low. I have an ANCA PR3 of around 25-30 but it's been like that ever since going into remission seven years ago. What is significant in your case is that you have gone from ANCA negative to ANCA positive. It might mean nothing but you need to keep a close eye out for any of your original symptoms returning. If you think they are then I would ask for the appointment to be brought forward.

[Webbyj in reply to Chris-Bromsgrove]

Thanks Chris. I was positive at diagnosis in 2017 but following treatment became negative. Slowly crept up over 3 months. I will speak to consultant again. She wanted to put me back on treatment but then decided to wait. I was reluctant to have treatment to be honest !! And I’ve no idea what one they would put me on.

[lrainlee in reply to Webbyj]

Should be less than 1. Mine is creeping up lately since I have been off Rituxan infusions.Heading over 0.6. but still anca negative thank God!Have u had infusions?They saved my life.

[Webbyj in reply to lrainlee]

Hi. I had 6 cyclo infusions in June 2017. Currently not on any tablets as supposedly in full remission! I spoke to my nephrologist yesterday and he said that it’s fine and no need for any treatment. My CRP has also gone up to 7.8 but again he said that’s nothing to worry about. I am unsure what to think as I don’t have any of the original symptoms I had when I was diagnosed.

I feel that if I speak to my rheumatologist she will want me back on treatment so I really don’t know what to do. Any advise please?? 😕

[Main1234 in reply to Webbyj]

Why don’t you contact the phone line and have a chat with them. You sound concerned about your results. Have you any new symptoms? I have found Vasculitis is quite sneaky!!

How are you feeling?

Are you on any medication?

My husband is still on AZA but beginning to reduce his dose.

Take care

[Webbyj in reply to Main1234]

Hi. I’m not on any meds and feel fine.

Aza was stopped as it made my white cell count drop too low. Put now I’ve been fine without meds. All blood results had been normal. How’s your husband doing?

[Main1234 in reply to Webbyj]

He was diagnosed with GPA nearly 3 years ago and on the whole doing ok.

Thank you for asking .

He feels better now AZA reduced less tired but I just worry he may flare again which is common I am lead to believe.

[Webbyj in reply to Main1234]

Yes apparently so. I think the main problem is not knowing if we’re actually having a flare !!

[Main1234 in reply to Webbyj]

You have it in one. That’s exactly it .