Just a quick one. Tomorrow I'm talking about the patient experience in an international symposium on PMR and GCA in Chelmsford, organised by our President Prof Bhaskar Dasgupta. There will be getting on for 100 GPs and rheumatology clinicians there, so it's a good chance to make our opinions heard! If you have a few minutes in the next couple of hours please please go onto the polls and vote! That will up the numbers for the figures I am going to give them. For example, 56% of GCA patients are satisfied with their treatment overall, but only 50% of PMR patients are satisfied with their treatment, What's that about?
Please answer all the polls if you have a minute - thanks so much!
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Polywotsit
PMRGCAuk team member
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Very good treatment for poly myalgia once it was diagnosed, but I had to go back 3 times to three different GPs before they took much interest. One Dr. said it is a matter of mind over matter.as I had had pneumonia and he thought this was the cause of my pains. At 7mg had a flare up GP said we must have dropped too quickly. Would have been good if he had known this. I then had symptoms of GCA stiff jaw, ear ache, teeth ache, headaches but it took three trips to GP and only after losing sight in one eye twice for 10 minutes within a week did he send me to hospital for suspected stroke. Stroke Dr. said I think you have GCA and I said so do I and was transferred to the eye clinic. Dr. there wasn't sure but prescribed 60 mg pred daily (I had been on 15mg) and I was better within a few hours. My GP said I should have had a biopsy and he arranged this and GCA was confirmed, but this was 3 weeks after I went to the eye clinic. Have now been referred to a rheumatologist who said I should have had the biopsy straight away and the aeye doctor should have arranged it.
It took two years to get PMR diagnosed despite seeing five or six different GP's. They should have found it earlier! Only when I crept into the surgery on hands and knees was it treated seriously and diagnosed tentatively and correctly 30 minutes later. From there on generally good progress these past 20 months but only seen the rheumy once, despite asking for his help over the past 18 month. Neither was I offered a bone scan until reading your poll results, I realized what I was missing. Tested 5 weeks ago, still awaiting results whilst teeth continue to drop out as do new fillings! Body pains much reduced due to getting pred schedule reduced gradually - initially the reduction was too severe. My greatest helper has been the PMRGCAUK - thanks from a 74 year old male who is enjoying life more now. Thanks to all
I'm a septuagenarian GCA suffererer and feel my treatment has been mediocre
from the word go. 2.5 dreadful months to diagnose (though that was a guess, no biopsy) and more or less left to my own judgement on steroids; no rhematologist involved and no blood tests after steroids were prescribed.
This is my second bout, my first 6 years ago went unrecognised and undiagnosed and 'cured' itself; eight/nine months then, twenty-two months so far this time, although I am definitely seeing light at the end of the tunnel. No thanks to the medical profession though!
Being widowed and on my own it would take paragraphs to convey the over-
all effect this illness has had on my life, home, (squalor at times!) and bank balance! At the very least, GPs should be made more aware of it.
I wonder if there is not much interest because it is a condition of the 'the elderly' but not fatal. Mind you, if it ever comes knocking at my door again it may well be for me!
Kate, I think I'm a little late to wish you well at the symposium but hope there will be others. You're performing a grand service.
Thanks for your responses, and Penny, I'll have a look and see what was causing the error message, if I can work it out. Mega so sorry to hear it has come back. That's rotten bad luck. The symposium last week went really well, in the sense that it was very well attended. We are working now to bring together a summary of the key points, which we'll post as soon as we can.
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PMR/GCA Unicorns! Share your goals for your recovery or give advice for people's goals and let's help members PMR wishes come true.
GCA some interesting info in large Swedish study
