recent diagnosis of GCLA
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I have recently been diagnosed with GCLA. After being discharged after one visit at Kings Mill Hospital because my blood test shewed no inflammartory markers. I was seen at Chesterfield Royal Hospital and diagnosed with the above. At both places I was displaying many symptoms and visual problems. I thought at first I had started with a left sided migraine but it continued for two weeks with scalp and temporal tenderness. I was sitting with my eyes closed because of problems focusing but the first Doctor ignored my symptoms. I am now on 40 mgms of prednisalone and visual problems improved very quickly.
I was treated by my GP in the past for a similar attack but not as severe and was given Prednisalone prophylactilly.
I am having a Temporal Biopsy in the next few days though these are not always positive. I had another test similar to the one for colour blindness and was shocked that I could not see the figures in the spotted circles. I'm not sure what this is called. I scored nil for left eye and 13 out of 15 for the right eye.
I have problems with Polymyalgia as well and flare ups occasionally.
Despite this I am a very positive person and try to enjoy life as much as my age will let me. I am a young 79 year old.
I think having this sort of attitude can help a lot to ease pain because life is for living.
2 likes, 14 replies
EileenH maureen63465
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I'm sure there will be others along to welcome you - and you sound to have a very positive attitude which does help a lot!
Look forward to hearing more from you and hope it is all good.
paul45653 EileenH
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EileenH paul45653
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A trial has been done comparing ultrasound of the temporal artery and a couple of other easily accessible arteries and it showed that U/S is as reliable as TAB. That, however, requires a trained and experienced technologist or doctor to do the scan - which will pose a problem in the UK, probably less of one in the US. You can also now find inflammation using PET/CT or PET/MRI scanning - but it requires the special equipment and it is very expensive so only found in highly specialised centres and not really applicable for routine scanning. You can have GCA without it ever affecting the temporal artery or other forms of vasculitis that don't produce giant cells.
And no - there are no known factors that make you more or less likely to develop GCA. In people with bloodwork that suggests inflammation is present some doctors say a higher blood level is more likely to mean more inflammation and so probably GCA. Normal level markers take that out of the equation.
The pre-disposing factors? Already having been diagnosed with PMR, in which case you are more likely than someone without PMR to later develop GCA. Or any form of autoimmune disorder which raises the likelihood of developing another one somewhat. But you can develop GCA without ever showing signs of PMR so in some ways having PMR is an advantage as you are then aware of its existence - most people had never heard of it before it appears. Women are slightly more likely to develop both PMR and GCA than men, about a 2:1 ratio.
Feeling flu-ey plus headache, jaw pain when chewing, scalp pain, any loss of vision are amongst the symptoms that should send you to the doctor - and you don't have to have any or all so anything affecting your vision, however briefly, should trigger an immediate visit to the doctor as an emergency. Even 999 (in the UK) is justified - because visual symptoms can be a sign of stroke and that, like GCA, is a medical emergency.
Guest maureen63465
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maureen63465 Guest
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Anhaga maureen63465
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maureen63465 Anhaga
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Many thanks for your reply. The Doctors have told me I will be on Prednisalone for at least 2 years plus Omeprazole and Calcium tablets.
It is great to have back up support from such nice people on this forum
Thanks once again Maureen. 63465
jeanne333 maureen63465
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EileenH jeanne333
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jeanne333 EileenH
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jeanne333 maureen63465
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maureen63465 jeanne333
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Susanne_M_UK maureen63465
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I was diagnosed with GCA at the end of 2014, following 4 years of PMR which was almost gone.
As others have said, don't let the doctors reduce your pred too quickly. I've had several flares and have been up and down on my dose several times. I've never got below 20mg and am now on methotrexate as well to try to taper the preds more successfully.
It is indeed a long slow journey, but having a positive attitude like you have is a great help I think. I had to give up a job I loved, but the positive has been that I've been able to concentrate on my painting, which is becoming much more than just a small hobby.
Keep in touch on here and let us know how you are doing. It's a great community.
maureen63465 Susanne_M_UK
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Like you, I have also taken up painting. It is a rewarding hobby and you tend to forget problems when doing something interesting