The new PMRGCAuk website: Happy New Year everyone... - PMRGCAuk

PMRGCAuk

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The new PMRGCAuk website

Fran_Benson profile image

Happy New Year everyone! Our new website went live over the Christmas break and the address for it is pmrgca.org.uk. We're still working on some of the content but do swing by and let us know what you think. You can reply below or if you see anything that isn't quite right (a link that might not be working or a typo) - do feel free to email us at website@pmrgca.org.uk

Feel free to share this link as well - the more people who know about our new website, the better.

Fran

47 Replies

Hi Fran,Could you remind me please of the exact wording we use for the Charity's name to use when placing orders on Amazon.

It doesn't always come up as an option when I order via Amazon, but the last time it did and tried to enter our name, that didn't work out.

Many thanks

Paddy

Fran_Benson profile image
Fran_BensonPartner in reply to Charlie1boy

Hi Paddy, you need to use the full name: Polymyalgia Rheumatica and Giant Cell Arteritis - you should only need to use it once to set up the Amazon Smile account and then just make sure you use the Smile account when you are ordering stuff - Amazon seems to be pretty good at reminding its users to do that. Hope that helps.

Fran

Thanks Fran. Yes, that does help; I wasn't using the full name - just pmrgcauk.Cheers and Happy New Year.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi Fran - bit disappointed to see the first sentence in the answer to “how long will I have PMR/GCA” -

Most people with PMR need about 1 year and with GCA need 2 years. Approximately 25% of people with PMR may have a more complicated form of the illness which might take longer to get over. The good news is, though, that most people will make a full recovery. It is of great importance that every relapse of disease necessitating a rise in prednisolone is formally diagnosed with assessment from a rheumatologist. Also, the tapering plan will need to change. After all, if you do the same thing again, you are likely to have the same result.

Might give false hope to new patients, but then greater minds than ours obviously put that together.

Other than that, looking good and more modern.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Who on earth wrote that?

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

The eternal optimist!

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

And leaving it to us on the forum to break the news when more than half of patients are still on pred after 5 years that that is absolutely to be expected ...

Charlie1boy profile image
Charlie1boy in reply to PMRpro

Always thought what I was told at diagnosis was helpful."Likely to be two years; may well be longer and could be chronic"

At least it reduced expectation for a good twelve months, and, by then, I was well into the Forum!

If there's one thing I really don't like, it's having expectations raised ( that's just one of Boris's problems too), and not that many seem to get away with a year unless they are very fortunate.

Also, it is my understanding that, unless there are other issues, PMR patients are looked after by the GP rather than a Rheumatologist.

Paddy

PMRpro profile image
PMRproAmbassador in reply to Charlie1boy

Yup - totally agree! If you start with a suppressed expectation you are less likely to be disappointed. My experience is that GCA patients tend to have a shorter journey but are more likely to be seen by rheumies. I don't think a lot of them have a clue about the PMR patient journey. My own rheumy here isn't in the least surprised at long term PMR but most patients do get to a lowish dose even if they then stay there for a long time.

Charlie1boy profile image
Charlie1boy in reply to PMRpro

Thank you for your reply. Just wish more people had your common sense.Paddy

jinasc profile image
jinasc in reply to PMRpro

I want to know that as well. 12 years ago we knew that the diagnosis and treatment paper said 2 years. They were wrong. They are still wrong. OK most men it does take about 2 years..............however as both illnesses are mainly women, in 100 people, around 10 would be male .

We published this extract in August 2008 and after checking with Prof Dasgupta and the people who produced the report.

" Figures (Incidence in Population)

There is a national primary care GPRD database, but this is not accessible without prior research approval.

UK Hospital’s and PCT’s do not record patients on a database. There is no accurate way of providing UK figures. GP’s treat patients without referral to Consultant Rheumatologists, but short of contacting every GP in the UK there is no way of obtaining with hard figures.

The number 84 is only for PMR per year and does not include GCA. Multiplying this by 5 years, we get 400 patients per 100,000 population.

The number of patients has increased with the aging population over the past five years and is continuing to increase. The age profile is also going down, people 50 and over are presenting with PMR as well as 60 and over."

In the past 12 years I have only known 3 who went into remission within the two years. One of them - PMR came back within 1 year. GCA average 5 years, until TCZ came along and not everyone gets or can take TCZ.

Why does everybody look ancient in the photos?

People in their 50's, who now look younger than they did in my day get PMR and GCA.

Which is why we fought to get both PMR and GCA to drop the age range to 50 onwards and won.

If you are going to do a website...........!!!!!!!!!!!!!!

Charlie1boy profile image
Charlie1boy in reply to jinasc

Ok, but I'm a man, and I've had PMR for six years now! There are quite a few men on the forum, but clearly not as many as women.Paddy

jinasc profile image
jinasc in reply to Charlie1boy

Paddy or Charlie1boy.

I edited when I found what I was looking for, I am a bit 😠 at the minute a lot of hard graft has been put in over the years...............

BTW I did say 'most'. I know 4 men, one who is now into his 15th year with both, but they are sort of exceptions and all have underlying problems.

If this is a bit better..................I never understood statistics as they were always quoted at me and then PMRpro explained about 'bell curves' I then learned that the mean average is the top of the bell curve and people fall down on either side. I was then able to play the game when they were quoted at me.

I am sorry you are one of the males not in the mean average.

Charlie1boy profile image
Charlie1boy in reply to jinasc

Hi,I have to say my tongue was in my cheek when I posted that.

Sorry.

Paddy

jinasc profile image
jinasc in reply to Charlie1boy

No apology needed, I should have explained it more and I am NOT 😠 WITH YOU in anyway at all. Stay safe

Charlie1boy profile image
Charlie1boy in reply to jinasc

That's nice. Happy New Year to you.Paddy

Also disappointed to see this:

"PMR has also been known to evolve into rheumatoid arthritis."

Well, no.

They are two different conditions that may initially present with similar symptoms, but RA becomes apparent when joint erosion becomes evident in xrays or other imaging, and be diagnosed in bloodwork where the RA factor is identified. But not all people with RA actually have the factor identified, or it is identified later in the progress of the condition, and is sometimes present in bloodwork with no symptoms.

PMRpro profile image
PMRproAmbassador in reply to GOOD_GRIEF

How can they even think of saying something like that? RA with a polymyalgic onset is fair enough - but since they don't have any definitive way of saying it is PMR they CANNOT make that sort of claim that it "evolves" ...

GOOD_GRIEF profile image
GOOD_GRIEF in reply to PMRpro

Well, I don't know, since PMR is a vasculitis and RA is a disease of the joints. While they theoretically can co-exist, one does not morph into the other.

It's a shame that the new site isn't as reliable as this one. There's enough disinformation in this world without supposed "authorities" disseminating more.

in reply to GOOD_GRIEF

"Well, I don't know, since PMR is a vasculitis and RA is a disease of the joints. While they theoretically can co-exist, one does not morph into the other."

I would say it isn't theoretical. PMR and inflammatory arthritis can and do coexist. At least my rheumatologist stated point blank that he couldn't treat both!

Also, distinguishing one from the other isn't as black and white as you suggest.

emjreviews.com/rheumatology....

One can only hope "they" get it right because of the consequences:

"A definite diagnosis of PMR or seronegative elderly-onset rheumatoid arthritis (SEORA) has significant therapeutic implications, since patients with PMR should be treated with long-term glucocorticoids, and sometimes throughout life, which predisposes the patients to serious side effects. On the contrary, in patients with SEORA, short-term treatment with glucocorticoids should be considered when initiating or changing disease modifying antirheumatic drugs, followed by rapid tapering."

I doubt there are any infallible "experts" regardless of the information source you choose to believe. Supposed "authorities" are everywhere on the internet but they have never actually treated a single patient.

GOOD_GRIEF profile image
GOOD_GRIEF in reply to

Well, all I can say in response is that the paper you reference has this sentence in its conclusion:

"In fact, PMR and SEORA [Seronegative Elderly-Onset Rheumatoid Arthritis, and presumably, other RA categories] must be considered two different diseases with many similarities."

I'm not a medic, but this simple sentence echos what I said.

Longtimer profile image
Longtimer in reply to PMRpro

Who are "they" does anyone know?

PMRpro profile image
PMRproAmbassador in reply to Longtimer

I don't ...

jinasc profile image
jinasc in reply to PMRpro

I don't either but.................

Hi Fran

The style and presentation are great and easy to use/follow.

You might already be aware, the replies to some of the FAQs 'cut off' part way through the answer text.

Also, there is reference to PMR as a syndrome - I haven't heard this term used for PMR before.

Some of your links need rechecking. One I tried on the PMR page kept taking me back to the beginning of the introduction.

Ditto to what Purpleazalia said. I browsed around a bit and liked what I saw.

I am so relieved that when I started my pmr 'journey' the northeastpmrgca forum and website were running. The information and support available was wonderful. I have had a quickish look at this new website and felt so disappointed by how pmr was described, as others have said above. I confess it made me feel angry and I will not bother with it again, despite being a member. This forum is of far more use and relevant.

Thank you for your comments everyone - here and by email.

We are hoping to officially launch the website in spring - at the moment this is what is known as a soft launch and shows the structure and look of the new website but is still incorporating some content from the old website and which we are still working on.

Some of the photos will change - to incorporate younger people - so that job is already in hand.

Thank you for the comments about links and technical issues - these are really helpful.

Fran

nuigini profile image
nuigini in reply to Fran_Benson

Hi Fran. I was happy to see that the membership application will now make it easier for Canadians to apply and become members. I actually completed the form and tried to pay the fee and a healthy donation but when it came time to process it said the site couldn't be reached! Now I know why, it hasn't been fully launched.

Fran_Benson profile image
Fran_BensonPartner in reply to nuigini

Hi nuigini, have you had problems with the membership application since Christmas? We've been testing that a lot and it should be working (we've had quite a few memberships come through) so I'm very interested to know if there are any problems there. Can you message me with any problems and I can look into it - thank you.

nuigini profile image
nuigini in reply to Fran_Benson

I haven't tried for a while as I had given up hope. I'll try again on the current website and let you know.

nuigini profile image
nuigini in reply to Fran_Benson

I'm sending you a private message

Well done on the new website but my only initial response is - why so much grey hair. PMR seems to effect younger folks every day. Should be a mixture of people featured (younger, older, grey, not so grey, diverse). Sorry if I am annoying but I live in London and we are all shapes, sizes and colours.

PMRpro profile image
PMRproAmbassador in reply to whitefishbay

I have seen one image for PMR which was obviously being a bit PC. The lady was black - but PMR predominantly occurs in caucasians and the incidence in black and Asian populations is under 0.5% so really not realistic or appropriate at all.

Fran_Benson profile image
Fran_BensonPartner in reply to PMRpro

Is that on the website?

PMRpro profile image
PMRproAmbassador in reply to Fran_Benson

No, think it is either an NHS one or from versusarthritis or whatever they call themselves these days. Whoever had done it didn't appear to have ever had much to do with anything to do with PMR besides a textbook!

whitefishbay profile image
whitefishbay in reply to PMRpro

I knew I would get a reply. Fair enough but do all the people have to be so grey because I think it makes it look like an old people disease so people care less. WE are not old. We are middle aged plus but super active. I guess I hate being put in the old category before time (yes my hair is def going grey). I am sure I am not explaining what I mean but do you get what I am saying? It is hard enough working when you are 60+ and London is super ageist. Maybe it is me being defensive.

PMRpro profile image
PMRproAmbassador in reply to whitefishbay

I do get what you are saying - but as I said below, looks like me at 51! Remember grey is the "in" colour, most people pay a fortune to get hair like I have free ;)

whitefishbay profile image
whitefishbay in reply to PMRpro

I'm getting trendier by the minute.

Fran_Benson profile image
Fran_BensonPartner in reply to whitefishbay

Don't worry whitefish bay the images will change. Last year our aim had been to arrange some images with our members but with lockdown we were unable to do so. The webdesigner used these ones but we are looking to substitute some of them with younger options too.

I am sure this is personal to me (and others?). Now that I am moving into the 'old' box on any survey I hate society thinking you are not living life to the full but existing. For me the best thing (work place or whatever) is a mix of society and ages.

What a thoroughly depressing picture. It’s bleak, anaemic & shows some poor soul devoid of anything in her life apart from her laptop. How about photoshopping a vase of flowers on the table? Or better still a photo that’s slightly more uplifting.

PMRpro profile image
PMRproAmbassador in reply to 123mossie

Dunno - thought she looked a bit like me at 51! I've been that white since I was 40 and have a similar shirt ... And spend a fair bit of time on the computer for various reasons ...

Here I sit at my laptop (wfh) and I definitely look anaemic but I have much more than work in my life (dreams of future travel!).

Hi Fran, Thank you for sending the new website. I was impressed with the way that you can access different areas of information and liked the layout. However would it be possible to amend the section on symptoms of PMR; I don't think I am unusual in having soreness and stiffness in my neck, arms, hands and legs as well as the sites that you mention. When I first found the NHS sites that mentioned only shoulders and back, I thought there was something really weird about me, but have since discovered that I am not the only one!!

PMRpro profile image
PMRproAmbassador in reply to humlies

Is that what the NHS says? I don't think I have ever seen a list of symptoms that didn't say "hip and/or shoulder girdle stiffness". One, the other or both...

humlies profile image
humlies in reply to PMRpro

I'll dig out the rather sketchy NHS information that my doctor originally sent me!

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