GCA and PMR, chickens and eggs

[Dochaz]

I'm wondering whether PMR is a complication of GCA or if it's the other way round. I was diagnosed with both simultaneously, but looking back to when I first began to feel PMR type pain without knowing what it was, I now think I probably had PMR first which then evolved into GCA. Any insights?

[DorsetLady PMRGCAuk volunteer]

Not sure there is a simple answer to that.

From a US site - which is a reflection of what many others also state -

Polymyalgia rheumatica (PMR) and giant cell arteritis (GCA, also known as Horton disease, cranial arteritis, and temporal arteritis) are inflammatory conditions that affect different parts of the body. They are frequently discussed together because:

●PMR occurs in approximately 40 to 50 percent of people with GCA

●GCA occurs in approximately 10 percent of people with PMR

The two disorders do not necessarily occur at the same time.

This gives a lot more info -

academic.oup.com/rheumatolo...

[Dochaz in reply to DorsetLady]

Thanks for the link. I have already done a fair amount of reading on the subject but everything helps to get a fuller picture. Off for a hike to enjoy the beautiful weather now 🌞

[winfong in reply to DorsetLady]

Horton's disease, eh? That's a new one. Now I have that to add to LVV, GCA, aortitis ...

[DorsetLady PMRGCAuk volunteer in reply to winfong]

Just another name for GCA. Named after Bayard Horton, although others seem to have described it before he came along even as far back as 940-1010 - Ali Jbn ISA (Baghdad Ophthamologist)….and he worked with others in 1932 (Magath & Brown) - but he seemed to publish the findings…

pubmed.ncbi.nlm.nih.gov/172...

[PMRpro Ambassador]

It isn't a complication as such - it is most probably on a spectrum of the disease which ranges from PMR, through large vessel vasculitis to GCA although it isn't entirely clear and there are other ideas,

academic.oup.com/rheumatolo...

Even if you can't understand the article, Fig 1 shows clearly the relationship of the 3 forms of GCA/LVV/PMR. GCA and LVV can have the inflammation in blood vessels demonstrated - it isn't known how PMR relates in that sense but it is possible to show the inflammation in specific places.

There is almost certainly a range of versions of PMR - PMR is not a disease in its own right but the name given to a set of symptoms which develop as the result of an underlying disease process - which can include cancers and other conditions. It is a diagnosis of exclusion - rule out the other things first and then maybe you can plump on PMR as we discuss it here. So PMR symptoms can be caused by LVV or GCA - or by another underlying condition. Pred isn't specific - it manages all sorts of inflammation so it doesn't distinguish between them. It manages all the versions - the actual underlying cause may be different and have differing characteristics such as specific presentation, duration and activity.

[TheMoaningViolet]

I listened to a webinar by Dr Chetan Mukhtyar (organised by PMRGCAuk) and he has a theory that PMR that becomes GCA is a misdiagnosed GCA from the start. He also suggested that while our understanding of GCA is much better than it was, the doctors seem to be still largely clueless when it comes to PMR. I think the webinar recording is available if you are interested (Fran may be able to help).

[cycli in reply to TheMoaningViolet]

I think this may very well be true and it chimes with my own circumstances. My real problems on reflection all began after my serious accident when I crashed off my bike at speed and was unconscious for 20 minutes. The head injury started a 9 month period of excruciating head pains and every bump or vibration, let alone cough or sneeze was very painful. that was September 2017. For years before that I had been undergoing osteopathic manipulation especially of the neck/head region for locked muscles which I put down to cycling posture. It all came to a "head" excuse the pun, after the accident and progressed through various muscular and other physiological inexplicable conditions over the next 3 years during which I trained for and completed a 6 day ride through the Dolomites. None of the symptoms could be explained until GP finally diagnosed PMR in June 2021. That was then augmented to GCA when the pred only worked temporarily and the dose was doubled. I'm convinced now that the injury to the head unhinged me more than my "normal" state and triggered the process. The ride through the Dolomites might have been the final nail in the coffin and from there the course was set. A year in and I am wiser, but still struggling to get my head around this disease which is a real doozy.

[SheffieldJane]

I agree with you. I think my PMR rumbled along for months undiagnosed, then after 4 years Non Cranial GCA/LVV was diagnosed, possibly a bit late too. I think it can be either or, both together, or in either order. They are close in nature and some researchers think that they are expressions of the same disease.

[winfong]

I think my PMR rumbled along for years before I developed constitutional symptoms (weight loss, shortness of breath, cough ...), which are pretty hard to ignore. When I did finally get a diagnosis, it was PMR plus extra-cranial GCA / LVV.

[PMRpro Ambassador in reply to winfong]

I never lost weight - if only - but I did have a cough and was short of breath, plus jaw pain and sore scalp. Lasted a few months and then disappeared. But my diagnosis was even a disputed (by a rheumy) PMR - I didn't know then what I know now! A different GP was equally sure though

[Dochaz]

Thanks for all the replies. I think the spectrum perspective is an interesting one. About the same time as fatigue and pain set in, I also had a dry cough for about a month last November/December. Thought that it might be Covid, but no. I now know that it can be a symptom of GCA too. GPs need to be aware!

[PMRpro Ambassador in reply to Dochaz]

So we keep saying!!!!

[winfong]

I had to fire my GPA before I could even start on the road to a real diagnosis. Definitely the "take tow aspirin and call me in the morning" type. He retired a year later. Definitely just phoning it in, I'm sure.