My 89 year old mum lost her sight literally overnight in January to GCA, she was diagnosed in 2009 with PMR but her symptoms were relieved by a 2 week course of Prednisolone and as she had no further problems we had no reason to think any more about it.
Following her first visit to Rheumatology a few months ago the doctor asked her if she would be prepared to take part in a study to which she happily agreed. We have been to our local Research & Development department today and as the study consists of just a one off visit to answer a series of questions and a blood test I wanted to raise awareness in the event other people might be interested in taking part.
It is a voluntary trial and the Chief Investigator is Professor Ann Morgan at Leeds University but I'm guessing you will need to be invited by a doctor or nurse, although I don't know if all hospitals are taking part.
The purpose of the study is to find out more about the causes and how to predict if someone with one of the conditions will be more severely or only mildly affected, it is hoped the findings will help others in the future and lead to better treatments with fewer side effects than the steroid treatment that is currently standard.
Hopefully to also raise awareness, we had never heard of GCA and may have been able to save mums sight if we had known what symptoms to look out for and she wouldn't have had to go into residential care.
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4sibbs
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Hi 4 Sibbs, I live in the SouthEast but have also been invited to take part in a different study by a different specialist at Leeds University Hospital. It is a study looking at why some people get lots of side effects and others don't , and looking to see if they can identify markers that can be used to measure and monitor steroid related side effects. Mine involves 2 separate days to undergo a variety of tests. I'm looking forward to doing my part in understanding steroids better. It seems Leeds are known internationally for the research they undertake in relation to PMR and GCA.
I know both the people mentioned here - I can only support what 4sibbs and runrig are saying - it is a brilliant department and both these studies will make a big difference to PMR/GCA care in the long term. If you are ever invited to join in a study please do so. Sometimes the things they need to you do are simple, sometimes they sound a bit more daunting, but all will contribute to what is known about the causes of and treatments for our illnesses.
Little drops of water, little grains of sand, make a might ocean and a pleasant land - and every bit of information about autoimmune disorders in general and PMR and GCA in particular can only make the outlook for our children better if they ever get to where we are now. It probably won't make much difference for us as most studies take at least 5 or 6 years to give answers - but sometimes they find surprising things very quickly.
Good to heAr of any research into PMR/GCA. so sorry to hear of your mothers misfortune too and wish her well.
PMR&GCA North East Support contributed £8,000 towards research into GCA at Leeds.
You can read about it if you follow this link. pmr-gca-northeast.org.uk/gr... page 5 and there will be an update shortly.
Currently there is more research being done into these two illnesses and if you want to find out more, go the the PMRGCAUK website and if asked to participate do so and you can also register with your GP that you will be interested in taking part in any Clinical Trials.
It always helps if you join you nearest support group.
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A tragic but inspiring and heartwarming story about someone running to raise money for PMRGCAuk after a friend lost her sight from GCA
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