Polymyalgia Rheumatica and Giant Cell Arteritis: A Survival Guide. This book is a must for your bookshelf or kindle

[Skinnyjonny]

Just purchased and read Kate's book ... amazing! It should be on all our bookshelves or at least in our Kindle's at present. Although I'm an atypical PMR sufferer being a very fit and active 51 year old man when I got condition last year I found myself drawn into Kate's book and could not put it down. My first reaction was "that is me" and my second reaction was "that all my family, friends and work colleagues should read the book to have a greater understanding of what I'm going through". I've never had a PMR discussion with another man my age who has gone before me and I really felt alone! This book provides the missing link. Congratulations Kate and the sooner the paperback copy is produced the better.

[Jane1175]

I'm a 55 year old female with gca and pmr and I'm looking forward to the paperback coming out.

[38jf]

Yes I agree, all I could think was wow that's me when I started reading it. I wish my husband would read it. Unless you've suffered from this no one can understand.

[Skinnyjonny]

My wife read the book immediately after me and I intend purchasing several copies to give to family and friends. Over the past 12 months I've maintained timelines and a daily fitness/health log plus a storyboard. It's amazing the similarities. Take care 38jf x

[trish29 in reply to Skinnyjonny]

How I agree with all you say .. Family , friends , GPS anyone that can't understand why can't you pull yourself together ..I am having a real bad week after a flare- up last Saturday night . I am still trying to get dressed since 8 am this morning . Just woken from a nap as I didn't sleep again last night and yet still I say So Sorry I have got this horrible condition and then I switch to my kindle and start to read Kate's e- book and tell myself ( that is how you feel..and relate to other things about the condition ) Well done Kate and I can't wait for the Paperback to come out. Best wishes to all sufferers trish29

[DorsetLady PMRGCAuk volunteer]

Never mind friends and family, should be a copy in every GP's surgery! Oh, I wish! DorsetLady.

[poppysmam]

maybe ATOS should read a copy too.

[BromleyPen]

How about doing the Carrots Night Walk for PMRGCAuk

I have downloaded Kate's book and read the first chapter - saving rest to read on a flight to Czech Republic tomorrow. I am sure you are right that friends, family and colleagues should read the book and DorsetLady is right ... it should be in every GP surgery ..... and public library.

[Skinnyjonny]

To pennyw and poppysmam and DorsetLady - absolutely - Kate's excellent book should be available to all via wide network of public areas and local groups. This will really raise awareness. Carrots Night Walk for PMRGCAuk eh? I've got 306 guests attending our annual Fire and Ice Cabaret Ball (Durham) with members from PMR-GCA NE Support. Also fingers crossed that I may be able to do my 18th Great North Run (13 miles) next September ... but that is another dream at the moment. "Keeping running free with a Smile"

[robinham]

Hello Jonny, I agree it's a great book. I read it last weekend all in one go. It really says it as it is. I am late 60s with PMR for about 30 months. Down to 5mg and 800mg Ibuprofen per day. Lots of people are against Ibuprofen but my Doctor and Specialist prescribe it happily for me provided I don't have tummy problems which I don't. I would be on at least 8mg if I didn't take it. I am told long term Ibuprofen is not as bad as long term pred. Best of luck with getting over it, it's a bit of a black art !!

[trish29 in reply to robinham]

Hello robinham , how interesting about your taking 800mg Ibuprofen a day.. In all the 9 years with PMR I have always been told by a previous Medical team that Ibuprofen should not be taken with Prednisolone because of stomach Bleeding. My new Rheumatologist did say I could take a small dose ie 100- 200mg which I have been very apprehensive to do but I have taken 200mg today as my pain level has been sky high all day. I have left off my normal Solpadol 500 mg painkiller this afternoon to see how I get on.The benefit might not be until the morning. It seems that the Ibuprofen helps you reduce so here's hoping . I see my GP on Monday so I will have another chat with him on this. Best Wishes trish29

[robinham in reply to trish29]

Hello Trish, I have been taking 800 mg Ibuprofen for the last year with my Pred. You must take Omeprazole as well otherwise you will have tummy problems. I have been taking that since I started the Pred with Adcal and Alendronic Acid. All this works for me! As far as I can find out the only problem is Stomach bleeding, as long as you don't get that and it works for you then it's fine. This is how my doctor put it to me. I doubt much less that 800mg is going to make much difference. I get it all on prescription so he know what is going. I do space it 400 in the morning at breakfast and 400 at supper. While the night can be painful it is better than it was before the Ibuprofen. I would probably be on a higher does of Pred with the Ibu. Pred is really affecting my muscle strength and eyesight so I want to keep it right down. I have other theories about flare ups as well but that is for another time. Hope it works for you. Don't give up too early but if you have tummy ache stop immediately. Cheers, Robin

[trish29 in reply to robinham]

Hello Robinham , thank you for your Reply and advice . I have been taking Lansoprazole for a long time now . I took 200 mg of Ibuprofen this morning as I had a better nights sleep last night so I thought I would stay on the Ibuprofen today to see if it will help with my high pain level. I know I am nervous to stay on the lbuprofen but it might help me to get down to the lower doses of steroid. I don't get flare-ups very often but we all know that they can hit you like a bolt out of the blue. thanks trish29

[robinham in reply to trish29]

Hello again Trish, here is some interesting information on Ibuprofen. drugs.com/pro/ibuprofen.html. It definitely says you can take Ibu with Pred and as long as the dose is low, side effects are not common. We are low, max dose is 3200mg per day I am taking 800mg per day so I infer that is fairly safe and my experience is it is and the benefits are huge. I do hope it is working for you. Best Robin.

[trish29 in reply to robinham]

Hello Robinham thank you again for your information . I am having a slightly better day but my pain level is quite high BUT I did manage to get out and get some fresh air and some sunshine.Exhausted when i got back but i least i did it. I am going to persevere with the cocodamol and ibuprofen for the next few days .This Forum is wonderful where we all help each other . thanks. trish 29

[Celtic PMRGCAuk volunteer]

Hello robinham

"I am told long term Ibuprofen is not as bad as long term pred."

Do be careful as it isn't just your tummy that is at risk from taking long term Ibuprofen daily - your kidneys are also at risk. I took a small daily dose of Ibuprofen for some 7 months during my undiagnosed and bed-bound days with PMR, and a few months later was diagnosed with chronic kidney disease. I was warned against taking it by a Pain Management Consultant - alas the warning came too late for me! Do take care.

[trish29 in reply to Celtic]

Hello Celtic .. I am taking in your advice as I remember you telling me before about your problems from taking Ibuprofen and I've heard other peoples stories so I am always apprehensive about taking it too frequently.. This has been a dreadful week re pain level so I just felt I needed that extra something to help the pain . Our lovely Rheumatologist did say I could take it when the pain level was high , so we will see and I am taking the coated version. Hope you are OK ? Love trish29

[Celtic PMRGCAuk volunteer in reply to trish29]

Hi Trish - the small dose that you are taking will probably be ok if your stomach accepts it, but only for a few days each time and not in high doses nor long term on a daily basis. At least this was the view of one medic I spoke to.......and that was before PMR/GCA and steroids! I can so understand people feeling the need to take it when the pain is bad, but am really surprised that it helps as it didn't do much for my pain in my early undiagnosed days. Proof that we are all so different in our response to both the illness and the medication. Do hope you're having a better day. Celticxx

[Hidden in reply to trish29]

Hi Trish,

If the pain is severe you can take ibuprofen with paracetamol or co Codamol. Taking them together makes each of them more effective as they work on pain in different ways. I hope you manage to find some relief soon.

Best wishes

[trish29 in reply to Hidden]

Thank You Keyes.. I have been scared to take ibuprofen and co-codomol together even though the pain is bad enough but maybe its worth a try . Thank you for caring trish29

[Hidden in reply to trish29]

Hi Trish,

Co Codamol won't have any bad side effects on your stomach or kidneys if taken at normal doses. Pain specialists are very keen on using different types of analgesia together to get the best results. Will keep my fingers crossed for you.

[robinham in reply to Celtic]

Here is a very interesting summary of the use of Ibuprofen. drugs.com/pro/ibuprofen.html it clearly shows that low doses say 800mg a day are much safer than high doses and they say they can be taken with Pred type drugs. Max doses per day is 3200mg and that is when problems really occur. In my own case I find them very helpful but of course I want to get off them ASAP. Robin.

[mickt]

Where can I buy the paperback ,don't want kindle version?

[mickt]

Where can I get paperback version ?.Only sells kindle version on amazon .

[Celtic PMRGCAuk volunteer in reply to mickt]

Mick - the paperback isn't out yet but I'm sure Kate will let us all know when it is available.

[mickt]

Im sure she will, thanks Celtic.

[tomasina]

I really enjoyed reading the book, however, was rather disappointed that apart from the very important information regarding loss of sight in the event of having GCA, there was very little about how patients feel when they have GCA and how it affects them. This is probably understandable in view of the fact that Kate is a PMR sufferer, (was). However, well done Kate, and I am pleased you have recovered and wish you many years of good health.

Tomasina x

[tommiesue]

i live in nova scotia and i cant get the book