Tingling feet and ANCA

[GinnyMa]

Had GCA in 2015 and on prednisone for 4 years…then no relapse but diagnosed with PMR in Dec. 2021. And now they have changed my diagnose to ANCA vasculitis, not PMR and have been upped to 40 mg of prednisone. I am due to soon start Rituxan. All very new and a very interesting side effect of disease is tingling feet!! They throw me off my balance!! I have been trying compression socks and they help with balance. As I understand it the disease narrows blood vessels and enough blood is not getting down to my feet!!

[Nadine99]

You need this to be checked out with a vascular consultant. My husband has GPA & similar problems with his feet. His arteries are quite badly blocked below the knew and has been told NOT to wear compression socks but you must find out what your situation is.

[GinnyMa in reply to Nadine99]

Thank you, I will check! I only had my biopsy two weeks ago, and have had a million blood tests, and now waiting to see my vascular doc. And will ask!

[Chris-Bromsgrove]

Hi GinnyMa. It's unusual you started with GCA, which is a large vessel vasculitis and now you have GPA which is a small vessel vasculitis. The small blood vessels supplying blood to the nerves in your feet are being attacked by your immune system. The shortage of blood supply to the nerves is causing the pins and needles effect. Hopefully the prednisolone will start to have some benefit.

[GinnyMa in reply to Chris-Bromsgrove]

I am on 40 mg of prednisone since my renal biopsy and a multitude of blood tests which ruled out lots of things….the nephrologist had diagnosed me as having Granulomatosis with polyangitis, which used to be called Wegeners. My original reason for seeking medical help was painful thighs and calfs, weight loss, lack of energy, night sweats, etc, etc. And rheumatologist said “ classic PMR, until they did blood tests, and then changed diagnosis. The learning curve for me is steep! Thank you for your explanation.

[Chesca64]

Hi GinnyMa I have GCA ( inflammation of Aorta at the back of heart ) and can relate to the Pins & Needles too, mine can be very intense also affects my balance My consultants have said of a possible crossover of a small vessel Vasculitis and label me as “complicated” I have been encouraged to wear my compression stockings as also a lot of swelling in lower legs. It’s now also affected my eyes, last year optic nerve inflammation in my left eye and just recently it’s in my right eye so now Preds increased to 30mg also have Tocilizumab weekly injections It’s so confusing as to which Vasculitis isn’t it? Hope the Preds help & your dose is soon lowered

[GinnyMa in reply to Chesca64]

Thank you for your explanation. My final diagnosis is Granulomatosis with polyangiitis.

[eh66]

mayoclinic.org/diseases-con...

[GinnyMa in reply to eh66]

Thank you for the link.

[Bassace]

Yes definitely tell your doctor but you’ve probably done that already. She might want to up your prednisone dose. Vasculitis cut the blood flow to nerves from my knee down. I had a flare 2 years ago and I still don’t have all the nerves back on my left foot, tho my right is mostly recovered.

[citygirl1234]

Hi GinnyMa,

I don’t want to worry you, but tingling feet and pins and needles can indicate that the vasculitis is starting to affect your nerves. I have ANCA vasculitis with peripheral neuropathy in my hands and feet and this sounds similar to how my nerve issues started. Please flag this to your vasculitis specialist so they can check it out. They might need to up your treatment. Hope all goes well for you

[John_Mills Volunteer]

I was diagnosed with GPA 21 years ago. I have probably suffered with tingling in my feet and lower legs for the past 15 years.

I suffered a DVT in 2007 due to the vasculitis followed by neuropathy also due to the vasculitis.

Your consultant who you see for the vasculitis should be informed and an appropriate referral made. I was referred to see a neurologist.

[GinnyMa in reply to John_Mills]

This week I spoke to rheumatologist about the tingling in feet. He told me it is a side effect of the 40mg I am taking daily while awaiting all blood test results to be in before starting Rituxan and then tapering the prednisone. Having been his patient for many years now , I trust his advice and have decided not to worry. Thanks for your interest and info.