Christmas Greetings.......

[Ida-June128]

Sometimes I look at this forum and I am amazed that we can be in daily contact with so many sufferer all over the globe. I have learnt so much from you all over the past few months which has contributed to my positive attitude towards what is happening to my body.....I just never expected to fall apart so suddenly almost four years ago. It pains me to see so many new posts every day; so many of them having been mis-diagnosed and waited so long for any pain relief. Is no one able to produce definitive guidelines for GP's and rheumatologists to study so that these symptoms can be assessed faster? In a previous life I was involved with producing consultant and pharmacist information leaflets for a major healthcare company, it's not an expensive procedure and surely with all our technology today this is not impossible. Easy for me to say sitting at home I know.

Thank you all for your wonderful information, sense of humour, and positivity.....may it last long into the New Year.

Have a happy and peaceful Chrismtas, swerve the stress - "I'm just going to lie down for a while", and I wish you all the most pain free future that is possible.

Ida

[PMRpro Ambassador]

The BSR have guidelines, which are about to be re-issued with stuff added that the support group have contributed. These guidelines are actually drawn up by international working groups so apply more or less the same in all countries and there are a couple of international groups working on getting together criteria for identifying PMR and GCA more accurately and then managing it better. Patient representatives are included in these meetings - one we go to is the OMERACT (Outcome MEasurements in Rheumatology) meeting held every second year, this year in Whistler, where doctors and patient consider how best to assess how effective treatments for various diseases are. That means they learn about the real symptoms and problems in how it affects us - much of which comes as a surprise it has to be said!

It is a difficult problem to sort out - no two patients present in the same way and there is no blood test to give a concrete answer. Some have raised ESR/CRP, some don't. symptoms vary - only something like 17% of patients with GCA turn up to the doctor complaining of headache as their main symptoms although about 40% will develop a headache at some point. But even then - that leaves 60% of patients who do have GCA who don't have headache but many doctors think you MUST have a headache.

The guidelines are there - but GPs, who form the front gate of diagnosis, don't have time to read the updates and all the rest of the review articles and simply don't know. It isn't helped of course by the fact many doctors get very touchy when Joe Patient turns up with information he gleaned on the internet - because this forum is the internet too even though the information disseminated is generally from reliable sources and - even more to the point - the experiences of hundreds of patients. And then, in the case of GCA, it is so rare that many practices have never seen a case in years so they don't have personal experience. Plus, the lack of continuity of care means they don't see the whole story for any given patient, never mind as many as we see.

It is improving though - honestly!