GCA - I am not going to apologise for this long post.

[jinasc]

I replied to Davidcantswim post when he was on holiday in Cyprus, I came late to his post and was horrified to see that he had not gone to hospital, for all others who had posted before me, had urged this course of action. My post was harsh.

He finally did what he should have done instead of posting on this forum and that delay could have ended up with David losing his sight, partially or totally.

If David reads this, and I do so hope that he never has to experience another fright hopefully, he will realise that people with GCA should always seek medical attention quickly. If it turns out you were wrong and there is nothing to worry about, you might feel like you have 'egg on your face................better you have egg on your face' and have been assured you sight is in no danger.

I was extremely lucky, one of the GPs in my practice 30 years, previously at another practice, a patient turned up with GCA.............that patient lost her sight, as they did not recognise GCA and that GP determined that would never happen to her again

I was the next one 30 years later. My practice moved so fast that it was like being in a whirlwind that did not stop for 5 days. I had GCA for 5 years and now into 8th remission.............yes still no cause or cure..............but we will get there, just not in my life time.

GCA is never, ever to be messed with........................once you lose total or partial eyesight, it is gone forever. All people diagnosed with PMR are supposed to be told to watch out for specific symptoms, some are told, some not.

People have fought hard battles to raise awareness of GCA. Too many people in the past, and some of them post of this forum, lost eyesight. It took nearly 11 years to get it recognised that it must be treat as an emergency, just like at stroke.

Family, friends and sometimes total strangers, running, walking, baking cakes, swimming, a 'Gentle Walking Group' set up by a PMR patient, raised over £2500 by giving £1 every time they walked and ended up in a local cafe, some with Nordic Walking Poles. School Children taking part in fund raising as there teacher had PMR, Pensioners, putting what they call 'shrapnel (1p and 5p's)' in a jar, and they are not rich pensioners at all......................none of this would be possible.

Last year the "Queen Elizabeth Hospital Rheumatology Dept asked PMR&GCAuk North East Support, for funding of £10,000, to cover 2 years for training GP’s in the North East & North Cumbria specifically in relation to PMR & GCA". This was given earlier this year and PMR GCA UK will keep us informed in the future.

That small charity has now closed after managing in 10 years to support research to the tune of £19,000 and never with more than 200 members.

Some of the people who post on this forum, can't count the time they have sent people off to A&E and have had to shout and yell at them and they have gone and sight has been saved. Many years ago I did a radio interview for the RNIB, they had told me that at that time nearly 19% of their members who had lost total or partial sight related to undiagnosed GCA. That unrecognition had to change somehow and it has because of 25 people who met in London 11 years ago.

PMR GCA UK came into being and any spare cash you have is welcomed.

All the support groups in the UK are run by volunteers and it is all done on a shoestring. The National Charity is run by 99% volunteers.

We can all make a difference just with our 'shrapnel'.

Thank you to all who have taken the time to read this long post.

I promise never to write such a long post again. I am 81 and well old folks do blather on..................✋

Hel (my Viking name).

[SheffieldJane]

Thank you!

[Hidden]

Well Said jinasc!

It was worrying yesterday & l believe David now realises that now.

It’s a lesson to everyone wether they have PMR &/or GCA so your Post is a good reminder to everyone.

MrsN

[Hidden]

Even with "just" PMR I like to know if I am flaring or something else happening. In the end the instinct to take more pred was right but I would always seek medical advice, especially when early in the cycle of inflammation. We know good and bad stress impact on pmrgca. It's never worth risking sight. When you read message from family of people who have totally lost all their sight because of mis- or no diagnosis it's heartbreaking. A timely reminder - Þakka fyrir

[jinasc in reply to Hidden]

Þakka fyrir - loved it.

I am a mongrel (4 different countries from where my ancestors hail ) who happened to be born on Geordie Soil..........so for my sins an awkward Northern Brit.

[composition]

not at all too long for me; i appreciate the input. My rheumatologist had an arterial ultrasound the first time I saw her and watches closely. Your comments will make me more vigilant. thank you.

[Marijo1951]

Although I like my GP, I remain very resentful that he didn't recognise my GCA, (or PMR for that matter, but the possible outcomes are less frightening) I had to wait 4 months for my first rheumy appointment to find out what was wrong, and it was clear that even when he was told I had GCA, my GP didn't really know what it was. I know many others have waited far longer than that, sometimes resulting in lost sight. When I told my children what had been diagnosed, they consulted Dr Google immediately and were horrified when they found out what could easily have happened. What makes it particularly annoying is that there is an established emergency routine that GPs are supposed to follow - why don't they all know about this? I'm glad to learn that your practice did know about it.

I had two serious GCA flares in the first 6 months after diagnosis and went straight to A&E quoting my hospital number and asking to see somebody from rheumatology. I received excellent treatment both times.

[jinasc in reply to Marijo1951]

"What makes it particularly annoying is that there is an established emergency routine that GPs are supposed to follow - why don't they all know about this? I'm glad to learn that your practice did know about it".

Please can you give the information as I would be very interested to know where they are.

My practice did not know about. I do not know about it either and it certainly did not exist 11 years ago.

They did not exist at that time. It is only because the new kid on the block ( 25 people 22 with PMR & GCA, One eminent Professor and 2 adminstrators) , got together 11 years ago that things have changed, slowly but surely and still ongoing.

This website did not exist, there was only one 'Patient info'.

The Guidelines on the Diagnosis and Treatment of GCA are not issued to GPs via NICE.

Those guidelines are issued by the British Society of Rheumatologists to who are all Rheumatologists who are all members, who pay into that organisation - just like a Trade Union - with a hefty fee as well.

They are also posted on the NHS website and other respected organisations.

It is too long to go into the why where's and...........just do not blame your GP .........

and please remember out of a population of, currently around 60m, only 50,000 at any one time will have GCA.

[Celtic PMRGCAuk volunteer]

I so second jinasc’s post - a recently joined member of my support group here in Surrey has lost vision in both eyes due to non- diagnosis and timely diagnosis of GCA. Another member - with PMR so already aware - rang me describing the feeling of something like a curtain partially blocking her vision in one eye. Straight off to A&E - that turned out to be a detached retina - another emergency situation. Another member with PMR rang enquiring whether waking up from an afternoon nap with blurred vision coukd be GCA or just pressure from the cushion. Straight to A&E - turned out to be a stroke.

Our sports-loving son, then 39, also awoke one day with blurred vision - it turned out to be a stroke, a clot to the brain. No longer able to meet DVLA guidelines but feels blessed nonetheless - now playing ice hockey!!

So, no matter what the cause, never ever ignore an unusual symptom in the eye - A&E every time.

[Purplecrow in reply to Celtic]

Thank You!!!

[Blearyeyed]

Keep writing long posts if they are so helpful and as sensible as this.

I would love everybody to read it .

Because delays today can mean loss of eyesight tomorrow with GCA.

It is hard to get people to realise that holding on or trying things out for a few days if you are already diagnosed ( especially recently ) or there is a possibility of GCA is not the best course of action , seeing someone , GP, Rheumatologist , or A and E swiftly is the key.

GCA is not to be messed with .

The work the charities have done in the UK has been amazing , but sadly still , there is not enough Medical and GP awareness in some areas of the country about the importance of looking out for and diagnosing GCA fast .

Most of humanity don't even know it exists unless they get it or a family member does , and it's the same for PMR.

Asking for advice is sensible and proactive , especially on initial symptoms, or new symptoms once diagnosed , or help to deal with appointments and tapering , or general tips and lifestyle changes , and the help you will get here is invaluable in the fight with GCA/ PMR.

But , it is just advice not actual treatment , and should never take the place of a trip to the GP or A and E , especially when the advice you are receiving is to do just that.

Thanks so much for your post

[DorsetLady PMRGCAuk volunteer]

Well said Hel.....you know my thoughts echo yours...Freyja!

Only just seen this, no notification today!! Feel I may have to create a storm!

[PMRpro Ambassador in reply to DorsetLady]

I've only just got here - my notifications disappeared for more than 20 posts! When I looked at Settings the box for notify me of new posts in my community was blank!! THAT was not an action I had taken believe me!

So Freya and Hel can kick up a storm on my behalf!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

That’s exactly what happened to me!

So I changed it, and things have been okay today, but I will report it!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Sent email to support centre - so we may get some answers.........

[PMRpro Ambassador in reply to DorsetLady]

... or not!

Hardly helpful a moderator being switched off is it?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Not really, no!

[Koalajane]

Well done for this. When my GP diagnosed me with PMR I was not given any information about GCA and only learnt about it from this forum. If I am at all worried when doing a taper I ask for a blood test for my ESR and even this is a struggle. I do see an ophthalmologist regularly who looks into the back of my eyes and hopefully would pick up on any abnormally (other than my macular oedema).

[jinasc in reply to Koalajane]

They will, they are all taught the signs of GCA and if they even suspect it....they call the nearest hospital and tell them you are on the way.

[Grants148]

Thank you ,you have written a very informative post jinasc,l must say my GP has never warned me about GCA,l have inflammation in a blood vessel in my neck resulting in constant tinnitus,the inflammation is suppressed by the prednisolone,but sometimes l get missed heart beats when it flares up . The information on this forum regarding GCA has made me aware of seeking urgent treatment if my vision ever becomes blurred.Thank you everyone !

[jinasc in reply to Grants148]

Did your Tinnitus start before your PMR or after.

Have you been sent to a Consultant to look into that 'inflammation' in the neck?

Oh heck I have diverted and asked a question...............no matter.

[nuigini]

That wasn't a long post at all! You and so many others have done a fantastic job in the UK raising the awareness of GCA. Congratulations! Sadly, we're way behind in Canada in that regard. So much so that I don't think I would trust any Emergency Department to give me the treatment I would need,

[jinasc in reply to nuigini]

You won't believe this, but Ragnar (the man who started the tapering methods) and I met on a Canadian website, run by Arthritis and a thread for GCA & PMR. We called it the Goodship PMRGCA and Ragnar was Captain and I was the Donkey Man. We are still in touch, he lives in Sweden.

[Grants148]

Thank you for your reply Jinask,l have not been sent to a consultant,but was sent to cardiology . I experienced the missed beats and tinnitus before the PMR flared up . The trouble is it does not seem to happen when l am having an ECG,or with a heart monitor. I shall go to A&E when it happens again ,the doctor knows this causes me a lot of distress when it affects my pulse,but just said it is not unusual to miss heart beats ! I shall try and push him for more attention to this problem ,l am supposed to lower my dose of pred but am afraid to do so because my current dose seems to suppress any problems occurring ,so far ,since the last flare up .l am on just 5 mg.of pred .

[Purplecrow]

Jinasc,

Well said,!!!

thank you for the very clear message about GCA and its potential consequences if not recognized and treated!

You are a valuable resource on this forum! Appreciated!

Jerri

[Retailmonkey]

So agree with you Hel - it is vital that at the slightest sign you get to the hospital. Currently 75% of those referred do not have GCA but all of the rheumatologists I have spoken to would rather that than miss a single positive diagnosis. The biggest problem is that not enough of our health authorities have a fast-track response for people referred to them and still less than 50% have ultrasound facilities for an immediate check - more investment in equipment and training needed. Whatever can be done to encourage the investment is really important.

The research by the Queen Elizabeth Hospital that Hel referred to has been delayed by some issues at the hospital but I can assure you that the funds are still there waiting for them to be ready to go ahead and I will make sure you all know when it goes ahead. PMRGCAuk is very involved in TARGET, an organisation of various hospitals and Universities around the country that is coordinating research on all sorts of aspects of GCA (and to a lesser extent PMR) and I can assure you that there is a lot happening.

Please keep supporting PMRGCAuk

Retailmonkey (AKA - [e-mail])

[Jackoh]

Not an unnecessary long post. Such important information. Thank you for the reminder.

[PMRpro Ambassador]

When I finally left the NE of England I went to say goodbye to the GP who failed to recognise PMR for over 5 years (he was a nice guy or I wouldn't have bothered). I and a colleague of his had attempted to educate him but when I asked what he'd do with a suspected GCA patient he said "Give high dose pred and pray ..."

Well, I suppose he'd learnt the first step. Just hope he'd have done a bit more than that!

[Skinnyjonny]

Very interesting few paragraphs, jinasc. I was one of the NE Trustees and I'm now the PMRGCAuk North East support group coordinator and ambassador as I couldn't see the North East not having a support group following our charity closing down. Our next meeting is on Tuesday 16th July 1.00-3.30pm when we have two excellent speakers that are medical professionals who have been heavily involved with the research and patient consultation for over a decade. They are also involved in the development of the Training programme and will provide a talk on "What is the best way for GP's and Doctors to give instructions for long term steroid titration" More information on the meeting is available at pmrgca.co.uk/group-pages/no...

Thank you again for your words x

[PMRpro Ambassador in reply to Skinnyjonny]

First time I've regreted no longer living walking distance from St Aidan's!!!!! Would love to be there with Sarah and Sara!

[Skinnyjonny in reply to PMRpro]

It would be lovely to welcome you to our next week but realise distance, time, etc is against you! Information has been sent to all CCG's and NHS Foundation Trusts in the North East as well as a few Rheumatology Departments and GP Medical Groups. Hopefully we get a great turnout for Sara and Sarah.

[Skinnyjonny]

I listen and talk to individuals (especially in the NE) and it's still amazing to hear such diverse stories of GP support. One lady has received fantastic GP assistance and they were more than willing to receive our "Living with PMR&GCA" booklet produced by the original NE Support Group. However, another GP (different location) turned down point blank the offer of the booklet!! Support Groups can support and work together with the medical professionals ... we just need to education some more than others ... but we'll keep knocking that door down.

[Anniegal]

Address or way to send funds? I am in USA.

[HeronNS in reply to Anniegal]

Info should be somewhere on this website: pmrgca.co.uk/content/home-page

[Fran_Benson Partner in reply to Anniegal]

There's a donate button on the top right hand side of our website.

pmrgca.co.uk/content/home-page

Hope that helps & thank you.

Fran

[cycli in reply to Anniegal]

I retired up North from Hertfordshire to become an upland farmer 9years ago. I live 6 miles from Barnard Castle and our doctors practice finally worked out what I had. Since then their attention and follow up has been exemplary. I've posted an article to cycling mags and national news. Just heard back from one mag whose going to edit it for their letters page. All press is welcome.