Vasculitis

[veniceinperil]

Hi there

I was diagnosed with ANCA vasculitis last Aug after suffering 2 cardiac arrests due to high potassium levels. I'm stage 4 CKD and my EGFR is currently 18 and my creatine is 344. I'm currently following the DASH diet to try to improve these levels.

I have scans coming up this month as part of work up to a possible kidney transplant in the future and feeling better apprehensive about it.

Any advice please.

Many thanks

Jane

[Chris-Bromsgrove]

Hi Jane, you haven't said how your vasculitis is being treated. How was it diagnosed? Did you have a biopsy on your kidney to confirm vasculitis?

[veniceinperil]

It was diagnosed with blood test after 2 cardiac arrests. I was in hospital for 23 weeks. I'm on currently on Prednisone and Aziothrioprine. I didn't have a kidney biopsy.

[Chris-Bromsgrove in reply to veniceinperil]

It is likely the Vascultis is responsible for your kidney damage. Positive diagnosis is normally through a biopsy of the affected organ rather than relying solely on blood results. If it is ANCA associated vasculitis then you would normally start on a more powerful immunosuppressant such as cyclophosphamide, to bring the the vasculitis into remission. Azathioprine is more a maintenance drug to keep you in remission. The doctor treating you should really have expertise in vasculitis.

[veniceinperil in reply to Chris-Bromsgrove]

I was on low dose chemo but it was stopped after serious side effects. Luckily vasculitis is currently in remission. I'm under the renal team at Brighton. Have heart scans soon which is a bit scary!

[gibson100]

You should probably look at a renal diet rather than Dash if your potassium levels are high.

[veniceinperil in reply to gibson100]

Thank you.