Raynauds and Vasculitis

[Webbyj]

Hello all, I have was diagnosed with raynauds some years before my Vasculitis diagnosis but had very few episodes. These last 2 weeks I have had 2 quite bad episodes with my fingers going white! I have been in remission from MPA for 2 years, medication free since April 2019. (Had to come off Aza and Pred due to serious side effects) My question is where do I go about this? I am under a Nephrologist at St Heliers hospital but it is not his area of expertise. I am worried it could be the start of a relapse. Last lot of bloods were fine. I have a GP appointment next month. Should I wait til then?

Thanks for reading!!

[AmyS1]

Ask your nephrologist to refer you to a vasculitis centre. The Royal Free in London might be your best closest one. There is a vasculitis clinic at Guys but it is headed up by a rheumatologist. Royal Free has more if a renal emphasis. Call vasculitis uk helpline for more information.

[Webbyj in reply to AmyS1]

Thank you I will speak to him again

[artists in reply to Webbyj]

Hi

l was first sent to guys , as l did not have diagnosis. The consultant confirmed l did not have lupus but suspected vasculitis. He sent me to the royal free . They were and are excellent. After 30years l finally got a diagnosis. It is really worth the travel for me

[cairneyh1]

Hi webbyj

I had raynauds years before being diagnosed with EGPA. I still have raynauds but not had any episodes since last winter. Get it when I touch cold steering wheel etc. I don’t think that this is a sign of a relapse.

Harry

[Webbyj in reply to cairneyh1]

Thank you Harry that’s reassuring!