Is there anything written by the way of a history of PMR/GCA?

[LIVEORDIEHEREIAM]

Is there a written history of PMR/GCA? What did people do for it back in the 1950s? When were they recognized as separate but very closely related autoimmune diseases?

[SheffieldJane]

Have you read Kate Gilbert’s book on PMR? (Amazon or similar) Pretty comprehensive. I can’t remember if she included a history though. It is the kind of thing PMRPro knows. DorsetLady is your person for the Viking origin of the disease.

I have a grandma and great grandma in whom, I am guessing, the diagnosis of GCA was missed, both lost sight, 1940/50s.

[LIVEORDIEHEREIAM in reply to SheffieldJane]

Thanks SJ.

I have not read the book. Did she include anything about GCA? I have both.

I ask because reading a book right now is not possible as my cataracts are making it too difficult. Surgery on both eyes was scheduled last week. After that heals up, I'll get a copy!

Thanks again!

[SheffieldJane in reply to LIVEORDIEHEREIAM]

I believe so. It has been a few years since I read it. I wonder if there is an audio version?

The very best of luck with your cataract operation. I have heard nothing but good things about it. I face the same thing at some future date.

[Richnroo in reply to LIVEORDIEHEREIAM]

I just got this book and yes it includes GCA.

[LIVEORDIEHEREIAM in reply to Richnroo]

Thanks Richnroo!

That is even more incentive to get a copy!

[Richnroo in reply to LIVEORDIEHEREIAM]

They do have a kindle version on Amazon, if that would help with your eyes any. I actually ordered kindle and paperback both

[Daffodilia in reply to LIVEORDIEHEREIAM]

Hi I have it on Kindle and used large print when waiting for cataracts to be done - it is great when they have been - simple procedure too - good luck

[Richnroo in reply to SheffieldJane]

SheffieldJane you recommended this book and I find it to be excellent.

[DorsetLady PMRGCAuk volunteer]

Couple of articles, 2nd is in much more depth and a bit heavy -

academic.oup.com/rheumatolo...

mayoclinicproceedings.org/a...

This last sentence from 1st article is still true!!

However, much more knowledge is needed and only waits to be discovered by the skilled, inquiring, and dedicated scientist.

[SnazzyD in reply to DorsetLady]

Really fascinating. Must have been awful to have had GCA and PMR back in the day.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

Well as we’re always saying most of the time it was a mystery - so put down to old age

But one wonders how many people lived into their 70s or 80s early last century or end of 19thC and where the original “age” definition came from. It must have been really awful if people got it in their 50s.

[PMRpro Ambassador in reply to DorsetLady]

Bear in mind that people in their 50s then were much "older" than we were in our 50s. For all sorts of reasons - even today, the life expectancy in one area of Glasgow is 28 years less than in another area only 8km away.

en.wikipedia.org/wiki/Life_...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes that was what I was alluding to (not very clearly obs!)so wondered where the “70 year old” comes in, as many wouldn’t have made it that far.

[PMRpro Ambassador in reply to DorsetLady]

I think it is from some of the fairly early work done in Olmsted County in Minnesota - big Scandinavian cohort within a very stable population there so lots of patients to look at and handy to the Mayo and its epidemiology centre:

mayoclinicproceedings.org/a...

The 70 bit is the average age of diagnosis - more common in older patients so that skews it, and DIAGNOSIS isn't the same as age of onset. I was more than 5 years older by the time it got a label, you were probably 2 years older.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

True.

[HeronNS in reply to PMRpro]

I think it is also the reason the Scandinavians are blamed for having PMR more than other groups. It may only be an effect of a more limited gene pool in that area. There is a disease in a community in Quebec which worldwide is very rare but common in that area and it is put down to the fact that original settlers brought it with them and passed it on to their progeny with a more limited gene pool than in the homeland. There is a name for his effect but I can't remember it.

[LIVEORDIEHEREIAM in reply to DorsetLady]

I read the first one (abstract only!). That tells me exactly the thing that was on my mind. Anyone who got it back before we were born had one choice: live with it! Imagine the suffering!

Hmmm... Pred made my life livable even if not perfect!

Thank you DorsetLady! You win the prize!

[DorsetLady PMRGCAuk volunteer in reply to LIVEORDIEHEREIAM]

Oh deep joy...pray tell what it is...a pack of Pred? 😂🤣😂. If so, put it back, no longer required 😊

[PMRpro Ambassador]

My grandfather almost certainly had it in the late 50s early 60s - he had all the classical signs and symtoms. He lived with it.

There is a story that in the early days of pred it was given to patients in wheelchairs and they got up and walked. PMR?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Very possibly.

[Mgt1234]

Hi, I’ve had PMR and GCA for over 10 years. It was only when I began with this life changing condition, that I discovered by grandma too had suffered the same .. but as knowledge was limited at that time (Mid 1960s) .. within the space of a couple of weeks she lost the sight in both eyes (aged 66) .

[DorsetLady PMRGCAuk volunteer in reply to Mgt1234]

Sorry to hear about your grandma, but unfortunately it still happens - 60 years on....

[LIVEORDIEHEREIAM in reply to Mgt1234]

A. So sad that your Grandma had that happen. And here we are complaining about side effects of pred! Maybe I can do a little less of that, given the historic perspective.

Thanks for sharing Mgt1234!

[DorsetLady PMRGCAuk volunteer in reply to LIVEORDIEHEREIAM]

You wouldn’t have wanted to be treated by Dr Bruce - see reply further down!

[Mgt1234]

Sadly it does. I believe my sight was saved due to one particular GP at my practice. I was on steroids to manage PMR but started with the most dreadful head pain, jaw pain, pain around my right temple. I made several trips within as many days to see my GP, he had me on migraine tablets, beta blockers etc but none were helping. Fortunately at my next desperate appointment he was away and I saw a lady GP who said she knew exactly what was happening and immediately phoned my Rheumatologist. I was put on 60mg of Prednisolone and within a few hours the pain had gone. Gratitude does not possibly cover my feelings to the lady GP. When I look back I had very obvious classic signs. It’s vitally important that when given a diagnosis of any chronic condition we have to learn all about it. I am so very thankful for this wonderful forum and valuable information. Needless to say the lady GP is now my go to GP.

[DorsetLady PMRGCAuk volunteer in reply to Mgt1234]

Unfortunately my GP wasn’t so switched on - and completed missed diagnosis.

Result - after 18 months of being treated for something, lost sight in right eye.

I agree it’s important to find out as much as you can about your illness - but when you don’t have the correct diagnosis that’s neigh impossible.

[Mgt1234]

Absolutely.. I read about your dreadful outcome and pray other Doctors learn from it. Take care xx

[DorsetLady PMRGCAuk volunteer in reply to Mgt1234]

Certainly hope my original GP -and surgery did.

That’s all you can hope for.

[Marijo1951]

Google 'Senile Rheumatic Gout' which is the name given to PMR in 1888 by Dr Bruce, the first person to identify the disease. I'm grateful to him but so glad that we no longer use the name he came up with. I've just googled it and there do appear to be quite a few articles on the history of both conditions that might be of interest to you.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

Or more particularly his treatment methods - thank goodness for Pred is all I can say!

ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to DorsetLady]

"There is, perhaps, no disease as to which professional opinion differs more than to rheumatic gout. This diversity of views is unfortunate, as it affects the kind of treatment and mode of life of the patient, and it disturbs the lay mind and gives occasions for remarks as to the uncertainties of medicine."

Plus ca change ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

😳🤦🏻‍♀️

[Marijo1951 in reply to DorsetLady]

Just had a quick whizz through - it doesn't seem to have much to do at all with modern medicine. I agree, despite the 80-odd possible side effects, thank goodness for pred!

I'm also struck by the fact that all his examples are men, when we know that most sufferers are women and presumably this was the case in the 1880s.

[PMRpro Ambassador in reply to Marijo1951]

Women didn't get a look in then - it was all hysteria! Some things haven't changed a lot - drug trials still concentrate on men. The hormones mess with the results they want for good sales figures! If it works for men - it must work for women too. Right?????????

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

As PMRpro has said - women had even less status then than they do now! And it would probably have been down to “women’s problems” whatever they had.

By the time they’d got out the kitchen or out of pregnancy they didn’t have time or energy to go to doctors.😳

[Marijo1951 in reply to Marijo1951]

I bought my granddaughter Caroline Criado Perez's book 'Invisible Women' for Christmas. I skim-read it myself before wrapping it up and was horrified, though not really surprised, by the number of ways in which women's needs are ignored and minimised even when we are supposed to have achieved equality.

[DorsetLady PMRGCAuk volunteer in reply to Marijo1951]

Not so much breaking through the glass ceiling as breaking through the Great Wall of China.

[PMRpro Ambassador in reply to DorsetLady]

And it is decidedly up and down ...

[LIVEORDIEHEREIAM in reply to Marijo1951]

Thanks Marijo1951! I will follow up on these. Now I have hours and hours of history to dig into!

[Smokygirl]

My maternal Grandma suffered from what she called Rheumatism. Her symptoms were exactly like mine were before Pred. Pain across biceps , shoulders, hips , stiffness etc. She lived until she was 85 and died of stomach cancer.

I was only in my very early teens, but remember her having difficulty getting out of bed in the mornings when she stayed with us in the late 50s. So I’m pretty sure she can’t have been on steroids.

[DorsetLady PMRGCAuk volunteer in reply to Smokygirl]

I bet she wasn’t either, put down to old age by the medics. But I suppose it shows you can get through PMR without steroids - although extremely painfully.