For those with an interest - last week’s The People’s Friend - discussing GCA Giant Cell Arteritis with VUK secretary , Kelly.

[John_Mills]

As soon the link becomes available on The Peoples Friend website we will share the ink on the VUK website

[PMRpro]

Really rather surprised the People's Friend didn't contact Scotland's own dedicated GCA and PMR charity.

pmrgcascotland.com/

Or the national PMRGCAuk charity

pmrgca.org.uk/

[John_Mills Volunteer in reply to PMRpro]

Peoples Friend contacted one of our members, VUK do have many members who have GCA. It is a type of vasculitis. We have found that the PMR GCA support is not always very good, there seems to more of focus on PMR. Vasculitis U.K. has funded research into GCA and will continue to do so, but not PMR.

[PMRpro in reply to John_Mills]

I resent that inference - the GCA support from the GCA sufferers on the PMRGCAuk is excellent. And do you really think that I need to be told what GCA is? I should point out that it is now widely accepted that PMR/LVV/GCA is a continuum of a syndrome.

academic.oup.com/rheumatolo...

To fund research on GCA but not PMR seems very shortsighted. PMRGCAuk funding is extended to both.

[John_Mills Volunteer in reply to PMRpro]

Yes of course we know this and the paper you refer too. As I said in my previous reply we have some members who have GCA and don’t have PMR. GCA is a a type of vasculitis.

Peoples Friend approached one of the members of VUK. She talked to them quite independently from VUK.

There are no specific tests for PMR sadly. The patient has to be seen holistically and signs, symptoms and blood tests taken into consideration before making a diagnosis.

[DorsetLady in reply to John_Mills]

As a member of PMR/GCAuk, and someone who lost the sight in one eye because of misdiagnosed by my then then GP, I (alongside PMRpro) am on the forum everyday giving advice regarding this condition.

I find your remark - "We have found that the PMR GCA support is not always very good, there seems to more of focus on PMR" - extremely insulting both from the charity's viewpoint and personally.

There may be more focus on PMR, and that's because there are more people with PMR than GCA, but also a lot that have both.

[John_Mills Volunteer in reply to DorsetLady]

You lost the sight in one eye due to GCA not PMR. Thanks to lobbying by Vasculitis U.K. and others there is now a fast track system for people with GCA who are at risk of losing their eye sight.

I was a member of the CRG when this was discussed and the process instigated.

A diagnosis of GCA can be confirmed by an ultra sound scan or by a temporal artery biopsy. Unless the situation has changed there are no diagnostic criteria for PMR - it is a patient reported condition.

We can only report back from the emails and telephone calls we receive via the VUK helpline regarding those who have GCA.

At VUK we give one to one support via the VUK helpline to all those who have vasculitis, there are over 18 different types including GCA.

Our helpline is open 9am - 8pm, 7 days a week , VUK do not ask for a membership fee and all the services including the biannual hard copy newsletter are provided free of charge. VUK does not actively recruit members , we offer one to one none medical support for those who are finding difficulty in navigating and getting the best care from the health care system.

We are very conscious of the problems of misdiagnosis of these complicated and rare autoimmune diseases.

Our soul aim is to support both patients and professionals in providing optimum care for people with vasculitis. As part of this commitment we have an annual programme providing funding for research. (we launch an annual call for applications for grants for research into all types of vasculitis)

We have funded research for GCA in the past and will continue to do so in the future.

[DorsetLady in reply to John_Mills]

I well aware why I lost my sight thank you, and have spent the last 8 years trying to ensure others don’t suffer the same fate.

I didn’t have /never have had PMR.

What I did have was a GP who knew nothing about GCA, (unfortunately at that time neither did I) so misdiagnosed me for18 months.

Due to GPs lack of knowledge I would never have been fast tracked even if it was available in 2010 which I don’t believe it was.

Fast tracking is excellent, but you still need a GP to recognised the illness in the first place.

[John_Mills Volunteer in reply to DorsetLady]

For many GPs now , sudden loss of sight is one of the red flag signs for urgent treatment. It is improving but not absolutely everywhere. COVID19 has not helped with recognising or diagnosing any type of vasculitis this last 12 months, sadly.

[DorsetLady in reply to John_Mills]

The trouble is sometimes even that is too late...invariably when sight is lost, it’s lost - the red flag should be headaches, tender scalp and jaw claudication.

Mine took less than 4 days to escalate from a slight blurriness at bottom of eye to complete loss....and as you know it can happen overnight with no warning.

Another 2 weeks of high dose before Ophthamologist was sure other eye was saved....we’ve had a few patient’s families in firm recently who have been as lucky.

So the more forums that cover this illness the better as far as I’m concerned.