Digestive symptoms with high atypical anca

[Sybennett]

I have MPA and been in remission for 6 years with no Rituxan since 11/2019. Rheumatologists and I are comfortable with monitoring labs every 3 months and holding off on any treatment until labs/symptoms indicate the need.

Most recent labs in October showed a high anca titer of 1:160 but mpo of only 9 —US lab values. I spoke with rheumatologist and he stated that the mpo value is the one to closely monitor since those are the antibodies that put us most at risk for organ damage and complications, rather than overall atypical anca.

Since then (mid-October) I have not been feeling great—2 bouts of gastroenteritis, loss of appetite, cold sores. These are some of the early symptoms I had back in 2015 when this all began. My question— has anyone else experienced similar or other symptoms while seemingly in remission overall?

Thanks!

[eh66]

Before I was first diagnosed I could figure why my normally low heart rate was creeping up at the same same time getting a number of mouth ulcers and increasing joint pain. I now watch my resting heart rate like a hawk. My consultant reckoned I was probably ill for months before things got really bad.

[Sybennett in reply to eh66]

Thanks for sharing your experience. It does help yo know that others have had some odd presenting symptoms and that vigilance is always required. Many thanks and best wishes!

[Chris-Bromsgrove]

Hi, I also have MPA. Thankfully I have remained in remission since 2012 (drug maintained). I know there is always a risk flares or relapses occurring so we do need to be vigilant. Any change in your ANCA level is a cause for concern and if this is coupled with a recurrence of original symptoms then I think it should be monitored closely. I hope you get some answers from your doctor

[Sybennett in reply to Chris-Bromsgrove]

Thanks and glad you are still in remission. You are confirming my thinking that I should follow up with rheumatology. Many thanks for your reply.

[monikagoyal]

Hi I am living in Canada I diagnosed with GPA in 2014 since then I am on Rituxan infusion as I need mean it depends on my symptoms. With Rituxan I had managed my GPA.I was med free for 2yrs.After that I was just get minimal dose of Rituxan to maintain my remission.I feel better with Rituxan