PR3 level

[jagjitd]

Hi guys

I just want to get a understanding I was under the assumption that having regular blood test and your PR3 level coming down is an indication that your vasculitis is under control.

I just started my mycophenolate and the rheumatologist said it takes 6 weeks to work and that even if the PR3 level isn’t coming down it doesn’t mean they aren’t working. Anyone able to confirm this. Thanks

[Chris-Bromsgrove]

Mycophenolate is a maintenance drug which generally keep your ANCA PR3 down rather than bring it down. You would usually start treatment with a tapering dose of prednisolone with pulses of cyclophosphamide. That said some of us remain slight ANCA positive but are in remission.

[xz3sgn in reply to Chris-Bromsgrove]

Hi Chris,

I'm exactly the same status as you with low ANCA and remission. Did you ever have any flare up & what level is your ANCA ?????

Regards

[Chris-Bromsgrove in reply to xz3sgn]

I have thankfully been in remission since 2012 with an ANCA PR3 reading generally in the mid twenties. However the last reading in December it shot up to 65. I never had it checked again due to lockdown and cancelled appointments. It is something I have been chasing and have I've finally got a blood test appointment at my GP surgery. Hopefully I will have a better idea what's going on in two weeks time.

[jagjitd in reply to Chris-Bromsgrove]

My ANCA PR3 636.2

Then went to 714.02

The second level was done on steriods alone and no mycophenolate.

I think reading what your saying it’s best to get the on the rituximab as thats what will start remission.

[Chris-Bromsgrove in reply to jagjitd]

Rituximab is an alternative to cyclophosphamide, although cyclophosphamide tends to be used as the first line of attack then Rituximab if the Cyclophosphamide is not effective in achieving remission

[xz3sgn in reply to Chris-Bromsgrove]

Many thnx Chris for prompt reply. Most Appreciated