Fantastic Book for PMR and GCA

[Andymegv]

On one of my earlier posts, a poster referred me to a book about PMR and GCA. My husband, 73 has been diagnosed with PMR. She recommended this book and it has been fantastic and eye opening and in many ways a Godsend, particularly for asking questions of the rheumatologist and his proactive GP who referred him to the rheumatologist. It answers so many questions. Highly recommend. Only on page 38, but so far it has already answered so many questions that I would have otherwise posted here for answers! "Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide." 2nd edition by Kate Gilbert

[PMRpro Ambassador]

Remember though that it is Kate's story of HER journey and not everything applies to everyone, There are also some things that are out of date just because a lot has been learned and done since 2016 when she published the revised version.

In case you didn't know, Kate was one of the original group of 5 ladies who helped get the national charity up and running - there was already a charity in Scotland and one in the NE of England. She also got the charity to start this forum - although the NE charity already had one and they had met on the patient.info PMRGCA forum. Over time this forum has gathered the active members of the other two.

[Andymegv in reply to PMRpro]

Thank you for that information, PMRpro for that very important distinction. It will be read with those important points in mind. Seven years is a long time in the research world, I would guess.

[PMRpro Ambassador in reply to Andymegv]

Especially in comparison with the time before it!

[Andymegv in reply to PMRpro]

Indeed!

[Hidden in reply to PMRpro]

I follow your advice and try not to read stuff, especially online , that’s older than two years. It makes good sense given the speed of chance upon a new discovery or method.

[PMRpro Ambassador in reply to Hidden]

Sometimes you can stick with older publications - it is important to find out if there is anything more up-to-date - but Quick and Kirwan's tapering paper is still being used by Quick today, because it works. Why reinvent the wheel?

[Andymegv in reply to PMRpro]

Now PMRpro, I must know where to find Quick and Kirwan's tapering paper! Forgive me, if you have already posted it.

[PMRpro Ambassador in reply to Andymegv]

Repeatedly ...

rcpe.ac.uk/sites/default/fi...

[Andymegv in reply to PMRpro]

Thank you for your trouble. 😊

[PMRpro Ambassador in reply to Andymegv]

It's no problem - that's on speed dial!

[Andymegv in reply to PMRpro]

Laughing! I am really trying to navigate this site, but the information is voluminous. So much, it makes one's head spin. And, we don't need two in this household with ailments, at the moment. {Grinning}

[tempusfugi in reply to PMRpro]

PMRpro, I've been wondering how to search items easily on this site, which I've found so enormously helpful, as so many have. I realise that the same questions must and do come up continually, so I check out FAQs and then the Healthunlocked search engine, which really isn't much help because it covers so many subjects, of course. One can spend a lot of time searching around sites, of coursse.

Whoops! I was just going to give you an example of trying to find something on the subject of Balance and have found the PMRGCAuk search engine, when I checked out All Posts!! How funny...now the question is will I remember where to find it when I next need it🤣

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

Once you’ve found a post you want to keep -just follow advice in this one - and Save it…always available to you then -

healthunlocked.com/pmrgcauk...

[tempusfugi in reply to DorsetLady]

and TY, DorsetLady..

[PMRpro Ambassador in reply to tempusfugi]

I don't think there is an easy way - even when you narrow the HU search engine down to just PMRGCAuk! I have searched my own posts with the exact wording of the titles and it tells me no match found or offers me practically every post on the forum! In fact, for some I find them faster on google.

That's why we compiled the FAQs but people don't look first ...

[tempusfugi in reply to PMRpro]

Frustrating at times but I guess that's life (with apologies to Mr Sinatra)!

[SheffieldJane]

Required reading in the early days.

[Andymegv]

Thank you SheffieldJane!

[Ridge]

Yes. A blessed book and one I took a long time to get. It led me to this forum and this charity. PMRpro is right but I believe she is up dating the book. I had notice that there is a zoom meeting on the 22nd March where she is on line asking us all questions. Frustratingly I can’t attend. Can anyone out there up load the link? I will try but …..!

[Ridge]

google.com/url?q=https://us...

I think this could be the link???? It is on Wed 22nd 3 - 4.30pm

[DorsetLady PMRGCAuk volunteer in reply to Ridge]

Hi,

Can I ask where you got the notification and this link from please? Not sure it’s widely available unless I’ve missed it….

[Ridge in reply to DorsetLady]

Through our local PMRGCA new formed group. I hope I haven’t stepped out of line.

[DorsetLady PMRGCAuk volunteer in reply to Ridge]

No…sure you haven’t., just thought it was odd it hadn’t been mentioned on here or on f/b page by charity…

PS -just realised it’s part of monthly zoom meetings…

[tempusfugi in reply to DorsetLady]

Yes, Kate Gilbert will be attending the Zoom meeting that Penny hosts on 22 March which, unfortunately, I'm unable to attend this month. As has been mentioned, she is producing a new edition of her book, which has proved to be so enormously popular.😀

[DorsetLady PMRGCAuk volunteer in reply to tempusfugi]

TY

[DorsetLady PMRGCAuk volunteer in reply to Ridge]

Got myself in the system now 😀

[PipandDots]

What's the title of the book?

[Sophiestree in reply to PipandDots]

Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.

[Sophiestree in reply to PipandDots]

By Kate Gilbert

[PipandDots in reply to Sophiestree]

Thanks I'll take a look

[Shanghi]

Yes, I have it thank you.

[misnomer]

I also read this book 2 years ago and realised that most of the people treating me know less about the condition than I now do, and yes I found the book incredibly helpful. I have also read a lot of the research and guidelines available via PMRGCA UK also very informative.

[Andymegv in reply to misnomer]

Knowledge is power!!

[Whitner]

yes it’s an excellent book and this forum is a real blessing too ❤️

[Andymegv in reply to Whitner]

Blessing is the right word!!

[colmarin]

Has anyone come across any other helpful books about PMR?

[Andymegv in reply to colmarin]

Great question- I was wondering the same!

[DorsetLady PMRGCAuk volunteer]

This was written by a fellow American who had PMR not quite in the same vein as Kate’s -

healthunlocked.com/pmrgcauk...

[Andymegv in reply to DorsetLady]

Thank you DorsetLady!!

[colmarin]

Yes, thanks Dorset Lady. I just placed an order.

When I was first struck with PMR I was desperate to learn more about a condition that had totally turned my life upside down. I ordered the books that I could find at that time. "Polymyalgia Rheumatica and Giant Cell Arteritis" edited by Bhaskar Dasgupta and Christian Dejaco. This is really more of a medical textbook I would say and challenging for the layperson. I also ordered "Polymyalgia Rheumatica - Why Me" by Bren Ryan. She shares what is a bit of a journal of her experience with the disorder. Kate Gilbert's book "PMR and GCA: A survival guide" was both very readable and informative.

I'm now 5 years in and have managed to get down to 3.5mg of pred. Still perplexed by the lack of information I've encountered and also the lack of awareness and support even from the medical field. Thankful for this PMR/GCA UK group though as you....the moderators and subscribers.....have been the guiding light in all of this.

[PMRpro Ambassador in reply to colmarin]

Bhaskar Dasgupta was involved in the founding of the PMRGCAuk charity and has been on the Board since its inception. Christian is my rheumatologist - and a source of advice for me here, we spend most of my appointments talking PMR research - I have an autographed copy of the book, as a medical scientist I understand most of it but for most patients it is not worth it.

[colmarin in reply to PMRpro]

Grateful for Dr. Dasgupta and all of the work he has done in the area of PMR/GCA research and treatment. He's been on the frontline and certainly made a huge contribution by helping to establish this group. How wonderful that Christian is your rheumatologist. You are in good hands.