PMR separate from GCA group

[blueisgreen]

I've been wondering for a while why this group lumps together PMR and GCA patients? As I understand it, the diseases have different characteristics, treatments, and protocols. I know some people have both, but might there be a reason to have separate communities for them?

[PMRpro Ambassador]

There is little justification for separating GCA and PMR as they are basically the same disease just different manifestations on a spectrum. There is also an intermediate form, large vessel vasculitis. Some of us have one version, others have bits of all 3. All of us have something to contribute, especially when someone is first diagnosed with PMR and it then progresses to GCA - a not uncommon experience.

academic.oup.com/rheumatolo...

In fact, some 12 years or so ago the original forums for PMR and GCA were on the patient.info platform and were separate. Five women "met" there, some with PMR and some with GCA, and got together to set up what has now evolved into the PMRGCAuk charity which gave rise to this forum. At an early stage they asked to have the 2 separate forum threads on patient combined, which was done within days, and so it has remained since.

From a purely practical point of view - GCA patients alone would be a very select and small group and the forum wouldn't have the profile it does because the footfall would be small. I think we have far more to offer as a larger, albeit more heterogenous, group. A great deal of living with any form of this vasculitis is much the same.

[DorsetLady PMRGCAuk volunteer]

Hi,

It's not just this group. they are linked together by other groups, including Rheumatologists, who are the experts in both diseases (or at least the inflammation side of things) - certainly in the UK. In North America other specialists seem to get more involved.

Yes, they are different, but in many aspects they overlap, both in areas of the body and the fact that blood vessels are primarily affected, albeit some in main muscle groups (PMR) and some in major and minor arteries (GCA).

As you say many patients unfortunately have both illnesses, and the treatment and protocols are not that different - except for the starting dose of the medication, and the initial tapering, which in GCA can obviously be larger tapers.

If they were to be completely separated I think there is a danger that some PMR patients might not realise that if their illness is not treated correctly it could lead to GCA, and wouldn't be on the look out for potential GCA symptoms.

Plus, of course, 2 smaller organizations would lose the "clout" that one larger one has.

[blueisgreen in reply to DorsetLady]

Thanks to both of you above. I understand this better now. By the way, I didn't know we had "clout" as a group. With whom do we have clout? I'm from the U.S.

[DorsetLady PMRGCAuk volunteer in reply to blueisgreen]

We do have one or two members of Parliament who are sufferers and they do what they can to highlight the illnesses and lobby on our behalf as and when they can.

I’ll admit we don’t have a lot of clout, but as the saying goes “2 heads are better than 1”.

[Daisychain12 in reply to DorsetLady]

I feel we have clout. I feel supported and I love us just as we are ❤️❤️❤️❤️

[jinasc in reply to blueisgreen]

Yes, in the USA, you have experts who are members of the EULAR/ARC (put that in your search Engine) and engage in research into GCA & PMR That committee has experts from many countries and also has patient representatives on both the GCA and PMR section.

One of those experts is Dr Eric Matteson who works at the Mayo Clinic. You can put his name in your search engine...............and you will also find he has just lately, completed a small research project specifically on pred and side effects.

' Clout'.

We in the UK, because of getting together and starting a charity now have support groups, raised awareness (and amongst medics) more research, 3 forums (this one run by the National Charity) and, most importantly, what we have learned from actual patients we have been able to influence the medics engaged in research.

Finally, people are no longer alone - we have some 'clout'...........and we will have more in the future. 99.9% of people running those support groups and the charities in Scotland and the rest in England, Wales and Northern Ireland all volunteers and of the 99%, 95% have either PMR, GCA or both.

Not bad going in 10 years.

[blueisgreen in reply to jinasc]

That's terrific. Yes, because of my strong Irish heritage, and because this is considered a Northern European disease, I'm not surprised at your "clout". I'll check out the American version, but this is such a nice group I'll stay here too. If you let me

[DorsetLady PMRGCAuk volunteer in reply to blueisgreen]

Please do! The more the merrier!

[Theziggy in reply to blueisgreen]

What part of Ireland? I am in Enniskillen, Co. Fermanagh

[blueisgreen in reply to Theziggy]

Northern Ireland - Ballymony

[GerriMc in reply to blueisgreen]

I’m in Dublin! 👋🏼

[Theziggy in reply to blueisgreen]

Not too far away, my Dad lives near Ballyclare

[Estellemac]

In my opinion it doesn’t matter. We all take Prednisone. We all react differently to Prednisone . Some of us have other conditions that interact or affect us with PMR or GCA. We all have a common goal to share information give support and offer guidance based on personal experiences. The final destination is the same too. Pred free. So I would ask is there a need to separate PMR and GCA when PMR can lead to the GCA. Forearmed is forewarned? Choose what’s relevant to you on this forum.

[Daisychain12]

Oh no. With respect I disagree. The two conditions overlap and sort of swim in and out of each other.

[Marijo1951 in reply to Daisychain12]

I had my first GCA symptoms at the end of March 2017 and the first pain and stiffness of PMR on 7th April - I remember the date well because I went to stay with my sister and had trouble getting out of bed for the first time (thought it was the unfamiliar mattress!), so they've run more or less concurrently for me.

[patriciawhite]

PMR can Lead into GCA . this site is a Godsend ,Join and reap the benefits of advice and even support from people who can relate .