GCA case studies needed for article

[Dev_Director]

The Daily Mail is writing an article on GCA, focussing on the need for a quick diagnosis. We realise this is a painful subject, but if anyone has had experience of the problems caused by late (or mis) diagnosis (i.e. sight loss), and would like to share their story, please can you let us know? You can call Sophy at PMRGCAuk on 0300 999 5090. We want to use this opportunity to create more awareness of GCA, and hopefully persuade the NHS to be more proactive in educating GPs - improving treatment outcomes as a result.

[raymck]

Hi Sophy, My sight-loss due to GCA is told in the PMR/GCA Newsletter [Southwest] for Autumn 2012 as "Ray's Story" pp4. Can't find the original doc. just a jpeg image of it which is poor quality. I have hard copy which could be mailed if you wish to pass on the address. Sequel to the story is Nov/2012 new driving license issued, which is the best part of the whole saga as you will realise. Still driving today luckily, so am very thankful for that and have joined "Club Zero" having come off steroids!

raymck

[Richard2012]

Dear Sophy,

I don't know whether you will be interested in my contribution to the submissions or not. In brief, my doctor suspected GCA/Temporal arteritis when I suffered three episodes of double vision following on from what had been previously diagnosed as headache associated with a viral infection. My doctor and the local hospital have been exceptionally good in follow up - I would say outstanding. I will explain this if it is of interest.

I am now down to just a 2mg dose of Prednisolone with a steady but slow taper down ;start level was 60 mg with a rapid drop to12 mg and then a slow taper. Apart from three times when I have had to hold my dose of Prednisolone steady for a short while I am problem free though I still have a slight headache, albeit now quite slight, this being at three years and a month after the start of treatment. I believe that I have been very fortunate indeed when I read on the PMRGCAuk site of the problems experienced by many other GCA patients.

My Doctors advice has included supporting my move to a 5+2 diet plus recommending me to go on a wheat-free diet. He supplied a diet sheet to me and I believe it has helped me greatly - the diet addresses a range of conditions and acts against prolonged inflammation. I believe these diets have worked well for me and I continue with them for good now.

The above may not fit directly in with a newspaper story which focusses on sight loss / impairment, so that is why I pose the question of my contribution to you. However, once I have finished with Prednisolone I intend to write a paper describing in detail my passage through my GCA illness. My intention is to provide a story of guidance to patients and doctors alike. I have learnt much along the way and desire to pass these lessons on.

Regards,

Richard P

[4sibbs]

Hello Sophy I posted on here about a year ago (original post can be found in GCA Symptoms) in brief my elderly mum lost her eyesight at the age of 88 literally overnight, she had complained of a feeling of pressure on her head in Dec 2013 but wouldn't go to the Dr as she didn't think they could do anything!! then early January she saw a locum GP after complaining of jaw and ear pain, he diagnosed an ear infection. She then had a fall on 8 Jan & needed stitches a few days later she complained of blurred vision, luckily I took her to eye casualty where they did a CT scan and took blood tests.

They seemed to be undecided as to the cause but after being there all day a consultant who she had not previously seen said although her symptoms weren't typical he wanted to treat her for GCA & put her on high dose prednisolone, a subsequent biopsy confirmed the condition, mum's character changed and she spiralled into depression when her eyesight did not recover.

The consultant has said it is very rare not to be able to save the eyesight with steroids so she is a bit of a mystery, she is now registered blind one eye is blurred she says the other has a film across she cannot see detail but is not black blind. Her confidence went & at her age could do nothing for herself therefore could not be left. She was admitted to hospital in May 2013 with a bad urine infection & didn't want to go home, mum is now in a care home we visit every day as she stays in her room with just her radio as company.

This condition has ended the life she had before, whilst she is on antidepressants I have no idea how she copes mentally, could her eyesight have been saved possibly if the locum GP had recognised some of her other symptoms but he put the jaw pain down to the ear infection my guess is very few GP's would have treated her differently, there is definately a need for raised awareness especially of multiple symptoms.

[Dev_Director]

Thank you so much for getting in touch, and for everyone else who posted here or called/e-mailed me. We had a great response and it was extremely interesting (and moving) to hear about your experiences. The journalist concerned feels he has enough material now, but we'd really like to collect your experiences and use them for future articles, or as part of a campaign to help raise awareness of GCA. I hope this is OK with everyone - do let me know if not.