Your story needed!

[Polywotsit]

First off, many thanks to Catie for stepping forward to be a moderator. She is a great example of the old adage 'If you want something done ask a busy woman', because Catie has been involved with forums for a good long while, as well as helping to run a local group.

Anyway, we have been approached by a Sarah Mackie, a research rheumatologist, who has been invited to write an article for a GP readership on PMR. Sarah is going to be speaking at our Members' Day next week, by the way. The editors of this GP publication would like a 'box' with a patient story in it - a kind of 'My experience with PMR', in about 200 words. Thing is, what is needed is something not too atypical. In other words, somebody over 50 when diagnosed, with a fairly normal bloods profile e.g.elevated CRP and ESR, and fairly good response to steroids in terms of the PMR symptoms. Do you think you fill the bill? Could you write around 200 words about your experience of symptoms, diagnosis and treatment? We can certainly use your story in many ways, whether it is 'the one' chosen for this article or not. So if you feel up to writing a short piece, please email it to us at info@pmrgcauk, with the subject 'Sarah's box'.

Many thanks, and looking forward to reading your stories!

Kate

[m33ary]

Hi Kate, Sorry my story is not typical as you know. If you ever need a story of resistant PMR let me know. I could write a book!! Hope you are well.

[Celtic PMRGCAuk volunteer]

Hi Kate

Does this include those sufferers with both PMR and GCA, and those with 'just' GCA, please?

Shirley

[tourdefrance]

Will certainly like to try, but think you might have left two zero's off the word count!! 200 words will cover the first hour all those years ago.

Sun shining; have a good day fellow sufferers

[Annodomini]

Hi Kate, I have had a go at writing something but my email provider won't recognise the email address you have given!

Anno

[GreyOwl in reply to Annodomini]

Hi Anno

I think the full address to mail is [e-mail]

Did you try that?

Take care

Grey Owl

[ianR]

I am new to pmr gca diagnosed yesterday by local eye specialist. I am not typical my esr has been 3mm and 5mm before pred. As I have been on pred for about a month he felt it would only be looking for a negative if he performed a biopsy and he would still keep me on pred because of my symptoms and I have improved on pred.

As I do not fit the ideal criterea do I have pmr gca. If only ideal cases are put forward for research will this not maintain the narrow view of many dr's.

I have read that about 20% of cases do not have a raised esr. One gp told me it would be veryunusual for a patient to be given a diagnosis with a normal esr. An average 20% would not seem unusual to me I expect this is me miss understanding something please can you help me understand this better. Confused from North Wales!!!!!!!!

[masonc3 in reply to ianR]

ianR: GCA without elevated ESR is rare, possibly never. What symptoms lead your doctor to believe you have GCA?

masonc3

[polkadotcom]

But I have both PMR and GCA and my blood markers have never ever been raised, I'm one of the 20%. I'm well into my 12th year on steroids and really don't want to spend more time refuting mischievous claims.

Certainly before diagnosis I was referred to a rheumatologist simply because I had no raised markers but had every other single classical symptom. My then GP said that until then she had not seen such a presentation, but learned from me that no two PMR cases are the same.

Before you all start hopping about and thinking that you will also take 12+ years to get through PMR/GCA - you won't! I have had a myriad of other medical problems cropping up through the time which have muddied the water well and truly

However two things I am sure about - that is that I do not have raised blood inflammation markers, never have had, but most definitely DO have both PMR and GCA.

[Hidden]

Hi Kate,

My initial symptoms were all my very experienced specialist needed to diagnose me with PMR, without any raised markers in my blood tests - classic case as far as he was concerned. The response to 30mg of pred left no doubt. Symptoms gone in 3 hours.

I feel that it's about time that some GPs and younger so called Specialists are given more directions as to how to manage this difficult illness and it's 'cure' (how many of them can't understand that that word should never be used when treating PMR/GCA.)

Prednisolone - what can I say - ' the agony and the extasy'.

My take on it all is this - so many doctors in the past have not recognised this illness to it's full extent, i.e. a disease of elderly ladies mostly, and 'lets face it, most of them will be dead soon, so why bother.'

How wrong that evaluation is now and was ever so!

I won't be in Sarah's survey - no raised blood markers, but, this has been one hell of a battle and still is as I play the referee between my sleepy adrenals and the present deminishing doses of steroids. It hasn't got easier, just different. The pain of PMR has mostly gone, but I'm scared - my 'love, hate' relationship with pred is tangible. I feel like a heroin adict that will be forced to be parted from her very devious 'friend'. Alone at last------?

Bring on the surveys.

Pats.