I would suggest that the Royal College of Rheumatologists should recommend this site to their members in order that they will be made aware of the problems experienced by patients with GCA/PMR, and also make them realise the conflicting advice and even wrong advice which is given to patients.
Tomasina
I completely agree Tomasina!
Or make Kate's book required reading. Also for all GPs. Surely some GPs must, statistically, suffer from PMR/GCA?
May we have details on how to get it, please?
Trenny
Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis: a Survival Guide" is available by writing to BM PMRGCAuk, London, WC1N 3XX, enclosing a cheque payable to PMRGCAuk for £7.99 (£5.99 for the book plus £2 P&P) together with a note of the forwarding address.
a great read x
Hello Tomasina .. I totally agree. I have had a conflicting week with GP but my Rheumatologist has come to my rescue ..i am just going off to Rheumy Clinic to have a Depo- medrone injection which my GP refused to give me even though it was ordered by my Rheumy..I have been in pain for ages now due to a Flare caused by a tooth extraction .. Kate's e- book is wonderful but all flares are different and you can forget how quick they attack and how your body shuts down and you are unable to do anything and the exhaustion on top is incredible.. Most of us PMR/GCA Sufferers get a lot of similar symptons so we can't all be dreaming it up . After 10 years I am still made to feel that it is all in my mind .. I've got news for them it isn't and this Pain is for real ..best wishes trish 29
Tomasina - cd you put the link up here, probably for 2nd time, but I'm using an iPhone & can't find it! I broke 5 ribs falling off a horse recently & PMR has seemed worse ever since. V achey & tired. Has anyone tried taking turmeric with discernible results?
I think Kate's book is very good. Nobody can understand how we feel unless they have felt it to. It's not just the pain and the constant threat of loosing your eyesight with gca it's also the horrible effect the steroids have on you, I don't recognise myself anymore.
I am new to this wonderful site. My husband is a GP and although had seem 2 patients with PMR recently missed my diagnosis
as did his partner because I didn't have classic symptoms. I saw my rheumatologist last night who is wonderful, my biopsy was positive for GCA and I had no visual symptoms, she struggles to get Opthamolgists to do them if there are no eye problems and has been saying for ages they are essential. I have told her to use me as evidence.
My impression is these are such complex diseases that much is unknown and the more information that is shared the better. Patient experience is such a valuable part of that.
Can someone let me have details about how I can get the book please?
Best wishes to everyone
Hello EdithWales
Yes you are proof that even without visual symptoms it is possible for a temporal artery biopsy to find large inflammatory cells indicative of GCA. Although GCA often attacks the temporal arteries (also known as Temporal Arteritis), it is also possible that it is just confined to the larger arteries in the body, in which case temporal biopsy will show negative results.
When diagnosed with GCA, you should have 1-2 yearly chest X-rays to rule out aortic aneurism throughout treatment and for a few years after treatment is discontinued.
Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis: a Survival Guide" is available by writing to BM PMRGCAuk, London, WC1N 3XX, enclosing a cheque payable to PMRGCAuk for £7.99 (£5.99 for the book plus £2 P&P) together with a note of the forwarding address.
Thank you Celtic. My rheumatologist is faultless and I have had a chest X-ray as part of my routine investigations, however what you say is interesting about aortic aneurism as I had always suspected my mother died of that, never had a post mortem, was complaining about severe back ache but hadn't seen a doctor for 30 years.
I will send for the book today.
Best wishes
I feel one of the problems is that symptoms are often mentioned as morning stiffness. It gives the impression to the uninitiated we get up stiff for an hour or so and then things get better. Give us steroids and we are fine!! I wish.
I and a few others are fighting this battle with an international research project at the moment - great surprise elicited with the statement "it isn't morning stiffness - it's all day stiffness but everyone is different"! We suspect that there is also great confusion amongst doctors about how pain and stiffness are perceived - I have had 3 people at least tell me in the last few months their rheumy says "PMR doesn't cause pain so what you have can't be PMR".
You don't have pain with PMR!!!! I wish!
Hi Piglette
It so difficult as my mother would have just put it down to old age. The more information out there the better, everyone is learning.
Best wishes
Celtic thank you for your wise information. After 5 years on metho and reducing preds(3mg). I often feel very ill. My chest , body and legs feel so heavy and I ache as though I have flu. However my bloods and blood pressure are ok so I cannot have further tests. It is 5yrs since a PET scan showed inflamation all over my body. I had to have 60gm of pred and methtrexate. They tell me none of my symptons are worth testing and I look at them and say I'm nearly 70 please believe me. So I just carry on trying my best. Having physio exercises now but was so tired yesterday I just sat for three hours feeling sick . But you know I just keep plodding on hoping the meds I'm on will keep me ok. Lovely to hear from everyone . It's just stopped raining so I am going to walk in my overgrown garden.
I went for an appointment with my consultant at Hereford County Hospital and someone had put a notice for this site up in the waiting room, I was very pleased to see it there
I have pmr - but I don't know the symptoms, or lack of them, for cga. What should I be l be looking out for?
Hello Anne. Read this on the PMRGCAuk site and it will explain the symptoms to you:
Rheumatologists and other Medics.
List of rheumatologists
Nutrition advice for pred users
Unable To Take My Advice
