My first post

[Westley]

I suffer with vasculitis and wonder if there're any fellow suffers?

[DorsetLady PMRGCAuk volunteer]

You'd probably get a better response on the Vasculitis forum - see link - that covers all vasculitis diseases, this forum just covers PMR and GCA (both cranial and Large Vessel Vasculitis) -

healthunlocked.com/vasculit...

...although you're always welcome to join us...

[PMRpro Ambassador]

What SORT of vasculitis? If it is PMR or GCA we're your right stop. But if it is anything else then the VasculitisUK forum will cover it better.

And as DL says - we welcome all!! If we can help an aspect of the management of your problems we will.

[Westley in reply to PMRpro]

ANCA vasculitis

[PMRpro Ambassador in reply to Westley]

Then the VasculitisUK forum will be much more appropriate - we are all ANCA negative here and the treatments are different so we don't know a lot about that. But we are very good at advice about living with chronic illness and any problems people have with corticosteroids if they use them at any point. Then we don't mind what you have

[Bushlady]

Hello Westley. I have Large vessel Vasculitus (in my leg) with PMR and am yet to meet with anyone similar. In answer to your latest question, I’m still taking no risks, especially as numbers are up and there will be no testing so there will be more people out and about with covid.

[Westley in reply to Bushlady]

Hi thanks for replying. How long have you had vasculitis? With me it's four years, im In remission but still have lots of pain in joints and horrible fatigue how about you?

[Bushlady in reply to Westley]

It was diagnosed in Feb 21 but I started feeling ill about 9 months before that and had various diagnoses from a torn Achilles’ tendon to Pernicious Anaemia. A PET scan revealed all. At present I am on 5mg Pred daily ( was on 60mg) and Meth 25gm once a week plus other meds. I’m glad to hear you are in remission but sorry you have painful joints and horrible fatigue. To tell you the truth I don’t know how I will feel from one hour to the next yet alone day to day. Yes I ache daily but in different places which I find weird and I get very tired too but like most people on here I won’t let it defeat me. I find now that I get out of breath very quickly too. I put the way I feel all down to the meds. What medication do you take?