Books on PMR/GCA and Prednisone

[Ligtocicar]

I've already read Polymyalgia Rheumatica and Giant Cell Arteritis a survival guide, by Kate Gilbert. Is there any other good books out there, on the subject and also on the use and side effects of prednisone? Would appreciate any information.

Gil

[polkadotcom]

There are several, although I can't remember titles right now. Do an Amazon search on 'polymyalgia' and that should bring up a list. But be careful now; some of them not helpful!

[Celtic PMRGCAuk volunteer]

Gil, take a look at "Polymyalgia Rheumatica and Giant Cell Arteritis" available from Oxford Rheumatology Library and edited by Christian Dejaco together with Bhaskar Dasgupta, Professor of Rheumatology and President of our National Organisation, PMRGCAuk.

[PMRpro Ambassador in reply to Celtic]

Warning though: this is a book written for healthcare professionals, part of the pocket book series from OUP, intended for carrying in your pocket during clinic! Unless you have a good background in medical/scientific language you will find it hard work and possibly even confusing.

[trish29]

Good Morning Ligtocicar.. I have got 2 Good Books on my Kindle on my tablet .No1 choice is Kate Gilbert's Survival guide which helps me so much !! and No 2 choice which isn't advertised a lot but I find it interesting and helpful .it is Polymyalgia Rheumatica -Why Me? by Bren Ryan. I keep Kate Gilbert's Book with me whenever I go away as if any flare or problem arises I usually find the answers and comfort ..At this precise moment I have been going through more PMR problems and have been able to read these books for consolation. I keep meaning to buy the Bren Ryan book in Paperback if it's available..i must check on Amazon.. Best wishes trish29

[jinasc]

Yes and you can buy it by ordering ir from PMR&GCAuk North East SUpport. Charity Reg No 1138409. via via the website pmr-gca-northeast.org.uk. Click on 'Support Us' for the drop down menu.

It is not available anywhere else.

It was co-written by Pmrpro and other patients No jargon.

Have just read "Living with PMR and GCA", a new booklet by North East Support. It really is superb - a book for patients written by patients who know what sufferers are going through and need to know. Cannot praise it highly enough. Wish I'd had it when I was first diagnosed with GCA five years ago.

Eric Clark

Award Winning Author and Journalist.

ericclark.net

sample of contents : 'The Slippery Slope of Reduction', 'Tips and Tricks'

I have the book Celtic refers to, but it is really for medical people, except for a couple of chapters. One written by Kate Gilbet.

You can find out where Support Groups are operating from PMR&GCA UK's website

On the Home Page of the North East website there is a Map of the UK where you can click on, in your area, and find the nearest support group to you.

There is nothing like a support group where you can find others and realise

'You Are Not Alone'.

[PMRpro Ambassador]

I doubt there is a text on the side effects of prednisone/prednisolone! They are listed on the data sheets and are fairly self-explanatory.

[Polywotsit PMRGCAuk team member]

Hi there! It's great to know that the book is useful for you, and it's humbling to know you take it away with you Trish! At the risk of being accused of self-promotion, the second edition of the book has a full list of references of all the sources that I used. This is missing from the first edition because I mistakenly thought that readers wouldn't want 'too much information'. While doing the research, I did read a book about the experience of being on steroids. For me it was a bit disappointing because the authors seemed particularly hung up on weight gain and 'moon face', which for me aren't quite as important as what pred is doing to our bodies on the inside. But each to their own! Read as much as you can get hold of, because every author has their own angle on a topic.

[trish29 in reply to Polywotsit]

Hello Kate Gilbert..it was a nice surprise to see your reply to me .i did wonder if I had contradicted myself re having your Book on my tablet as well as in paperback, but I always put the paperback version in my handbag when I go away as my Flares seem to happen suddenly and if necessary I look things up but my Partner is very Sceptical about reading up on other sufferers posts..he thinks if I read about what they have got then I will think I have it too.. I know what I have and how much I am suffering .. Negativity has kept me away from my Medical Practice this year in particular but Being with a Very Good Rheumatologist I have managed to carry on Regardless but not able to get past certain hurdles in my reduction, but through having recent flare-ups in my legs I decided to go and get GP advice and for the first time Ever in my time with PMR I have met a Lovely Lady GP who understood PMR and was very sympathetic to me..the only blip is that she is just going off on Maternity Leave but hopefully be back to the practice ..Re reducing she said that not to rush it as Quality of life is very important and she has referred me for a Dexa Scan which I am pleased about ..i was disappointed that I haven't had Blood tests done yet and had to go back yesterday for her to look at my legs again ..They are slightly better ,soreness under control, but Blood tests are due to be done Next Wednesday 28Sept ..i feel this is so long when I can inflammation in my body and don't want to go up any higher on the steroid ..i am taking 16.05 mg but she feels that I have had a Viral Infection as well .It was just so nice to find someone who cared.. Maybe one day this Nightmare will be over and light at the end of the tunnel...i wish !! Thank you Kate and I was so Disappointed that I missed out on Yesterday's meeting at Chertsey .. trish29

[Celtic PMRGCAuk volunteer in reply to trish29]

Missed you too, Trish, but didn't have chance to get in touch as had to head straight off to my beloved aunt's funeral in Wales.

Great news to hear that you now have a great GP as well as our wonderful Rheumy but with any luck you won't be needing her by the time she returns from maternity leave - fingers crossed, and stay positive.

[trish29 in reply to Celtic]

Hi Celtic ..so sorry you're lovely Auntie has passed away and I hope you are ok. It has been very hard the last few weeks to stay Positive. Fighting one thing and another but as Always there seems to be something positive on this PMR journey..Ist thing is I'm pleased that I haven't got an infection in the legs and the second is the Dexa Scan I am waiting for I have wanted for some time. I have also got to wait until after the scan and Blood Tests before going back on the Calcium and Vitamin D. I was upset to miss Tuesdays meeting but Judy sent me an e-mail to see how I was and that the meeting went well.. I Don't want to miss the Next One..Take care lol trish

[HeronNS]

I'm trying again to get my public library to order the book. So far they haven't because it's "self published". Maybe seeing a 2nd edition has been made will help them change their minds! The library has nothing specific on the subject, although polymyalgia (not giant cell arteritis) shows up as part of a larger book on arthritis published in 2009.

[Polywotsit PMRGCAuk team member in reply to HeronNS]

Hi. I know where the library is coming from, but it's a pity. It's self-published so that it can always be available and won't go out of print. If it had been handed over to a publishing company they would have done one print run and then sold it to 'The Works' as a remaindered item. But it does have a bona fide ISBN.

[HeronNS in reply to Polywotsit]

If they reject it again I'll go in person and insist! I used to work there so I know people.