Pauci immune glomerulonephritis (ANCA negative) anyone?

[Swissie]

Hello. New to this forum. Was diagnosed in January with microscopic vasculitis. Exact description as above. Kidney function at 15% at time of diagnosis. 8 weeks into treatment (Prednisone and Endoxan infusions). Thankfully have responded very well. Anyone put there with similar? S

[Ayla Volunteer]

Having looked this up on Google, I see that this term means the rapid decline in kidney function when the glomeruli in the kidneys become inflamed and scarred associated with vasculitis. I had this too (I have MPA like you) but never reached the low level of kidney function you had, I think 34% was my all time low but it did make the renal consultant jump into action! How is your level now? Glad to hear you are improving.

Ayla

[Swissie in reply to Ayla]

Hi Ayla. Thanks for your reply. They haven't put a number on it, but my creatinine, which was sky high, has returned to within normal range. I think that's a great sign. S

[HiveMind]

I have CSS and due to the Norro Virus my meds accumulated in my body and unbeknown to me, caused my kidneys to toxify. My GFR fell to 5%. I was admitted to hospital as an emergency case and was prepared for dialysis.

Fortunately, after a week of fluid and antibiotic IV's my kidneys recovered well enough to return to a GFR of 60. I was very very poorly and I never want to repeat that experience again. It was horrendous.

[Swissie in reply to HiveMind]

Horrendous is right and when it happens very quickly it is frightening. Just trying to gather information now and prepare myself for what the next few months will bring. Next step is to replace the cyclophosphamide infusions with tablets, though not sure yet when that will happen. Great to find this site, as nobody else seems to have ever heard of vasculitis.

[Treebar]

I was diagnosed with MPA (and the exact same diagnosis as yourself) in 2008 after being very poorly and a GFR of 7%. After a week of plasma exchange, was treated with a few drugs that had adverse affects on me and then Mycophenolate and Predisolone. Now being weaned off steroids but still on Mycophenolate - which seems to be doing the job. My kidney function is now stable at around 40%.

Good luck with your treatment - it can all seem a bit overwhelming at first as it is such a rare illness but this site is a great help.

[metalback]

Also MPA diagnosed in 2008 with kidney function down to 20 %. Now around 40%. On azathiprine and pred. It is scary to start with but you do learn to adjust and live within your capabilities. Good luck