"Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide" is now available as an e-book on Amazon
amzn.to/1ff8LA7. Online you can read the start of the book, including the whole of the introduction chapter.
Unfortunately there are a few illustrations that have not followed through onto the kindle version so people who download it will find that the illustrations are not there. However, none of them are essential, and this will be dealt with on Monday.
(If this link doesn't work because you are not in the UK, search Kindle Store for polymyalgia.) The price for the e-book is £4.30 or US$6.99, and 75% of this will go to PMRGCAuk. Even if you do not have a kindle, it is possible to download the book for reading on a pc, smartphone or tablet.
Thanks so much for letting us know that you would like a print edition. This should be available for order later next week and I'll post again here about how to order it.
Many thanks
Kate
Written by
Polywotsit
PMRGCAuk team member
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Thank you Kate.. I look forward to reading your book and I have decided to buy it in both Formats as and when they are released.. I wish that there could be a miracle cure for this condition but having this Forum and fellow sufferers like yourself to help us get through our day to day struggle with PMR/GCA is a great comfort. I don't have GCA but feel very much for the people that do. I missed yesterdays article in the Mail on GCA. I didn't go out because of a high pain level so didn't buy a paper. I usually collect the Newspaper cuttings. Good Luck with the Book I am sure its going to be a big seller. trish29
Thanks Kate. I have downloaded it to my Kindle and have read a fair bit already. It's brilliant. I love the way it is written!
I hope you don't mind questions about the content. You differentiate between your PMR pain being on the ridge of the shoulders spreading into upper arms and your customary (non-PMR) shoulder ache being around the shoulder blades. This has worried me a little as my pain has always been around the shoulder blades, upper back and sometimes tops of my arms. I don't remember having it on the ridge of my shoulders at all or neck. So, I am wondering whether it is PMR after all that I have.
No, I was aware while writing that in giving my own experience I might be setting that up as the 'classic' or 'correct' way that PMR presents, but I'm just saying that's what it was like for me. I'm pretty sure it's different for different people. For example, I have been talking with a man who hasn't had it in his hips at all, but I used to feel like I had a giant elastic band round my bum that was being pulled tighter and tighter. Perhaps in the next revision I'll have to be clearer about that - thank you!
Thanks very much Kate for your reassurance. The 'Chinese burn' thing is definitely how it felt though! It was good to see the type of pain described as being just like mine.
No need to worry - my pain was so bad in my shoulder blades at one stage that I couldn't sit back against a chair. It was when I was on the very low doses. An excellent physiotherapist located several knots (we injure easily with PMR and steroid-weakened muscles) and sorted it with gentle massage, ultrasound and heat treatment.
Hi Kate, I have also downloaded it and read a fair bit of it today. Very well done, it is very well written, and I have learned a few more things along the way. I was particularly interested to read about the new drug available that combines Prednisolone and dipyridramole, and enhances the effect of Pred by 10 times. Im used to using Dipyridamole for its anti-platelet properties for use in heart patients. If this was found to work it would hopefully help with steroid reductions, and perhaps offer GCA protection against clots forming. Is there details of research currently being undertaken on the PMRGCAuk web? Will read some more this evening, as bedtime reading
Thank you Kate .. I managed to get the e-book downloaded to my Kindle this afternoon.. Very interesting reading and I think I will book an appointment with my GP to see if I can get some tests done on my Adrenal Glands as I think they aren't working properly after 9 years on Prednisolone.. What interesting reading about the different new medications. Its nice to think that theres more medicines out there to help reduce the steroids but nothing seems to work on me. I have a very sensitive stomach which doesn't help. I like the way you describe the Steriod Head. I always feel that I'm not in control and out on my own . Its so nice to get a book that is written in the way you can understand it. Best wishes. trish29
Just read it Wish it had been around when I was first diagnosed 3.5 years ago . Now down to 4 and am going to start the drop to 3 by doing the one day a week reduction
A question was asked about the dipyridamole/pred mix - there was a study underway using it in RA which was cut short in 2012 because it didn't reach the end point - i.e. it failed to do what they hoped it would do:
"This study has been terminated.
(missed endpoint of meaningful clinical benefit, compared to prednisolone 2.7mg)"
There is a further study which started in early 2012 and should have finished by now but there has been no update on it since September 2012.
I think it is fair to say that most such trials disappear into the ether and nothing is ever published.
Yes I'm trying to follow up on it because you're right, it has all gone very quiet, and PMRGCAuk wrote a letter of endorsement to the research funders for this study.
Thank you Kate maybe my family and friends will understand a little better when they read your book, they are all very good but I don't think they know how I feel. I have had GCA and PMR for six years, a pain free day would be lovely.
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