GCA
Posted , 9 users are following.
i have had Polymyalgia for a year and due to stomach problems I am having steroids by injection rather than taking Prednisilone. On Friday evening I started with a severe headache, tenderness on my scalp, down the side of my face and in my Jaw. By morning the symptoms were worse. Knowing the risks of GCA I rang 111 who directed me to A and E. I had blood tests and everything was normal and was sent home with painkillers. Today the symptoms are still as Bad. Is it possible to have GCA without bloods showing anything abnormal. What do you suggest I do?
0 likes, 16 replies
ptolemy hilary_76724
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hilary_76724 ptolemy
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EileenH hilary_76724
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As ptolemy says, 1 in 5 never have raised results and even if you did at the start the fact you are still having pred injections can stop them rising again. The dose you are on at present is almost certainly not enough to prevent a progression to GCA if it is going to happen.
Does your A&E hospital have a rheumatology or eye department? Where is the nearest that does? I can't even suggest taking an emergency dose of pred which is what good rheumies tell us to do - if it helps then it is more suggestive of GCA than just a "headache" and keeps you going a bit longer until you see a decent doctor.
Ptolemy - even some rheumies don't know you can have GCA and no raised blood markers, some refuse to accept the idea at all saying it can't be GCA/PMR.
hilary_76724 EileenH
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EileenH hilary_76724
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Can't remember where you are. If 111 said to go to A&E you could ring them again and tell them you need to speak to an on-call doctor urgently and tell them what has happened and that the symptoms are worsening. Emphasise the risk of visual loss to the call handler. They got it right the first time - maybe a OOH doctor referral might help.
hilary_76724 EileenH
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EileenH hilary_76724
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It ALWAYS happens at the weekend - I've lost count of the number of posts like yours I've seen at weekends. I know it is tempting to go to the nearest A&E - but if you are already "on the books" at a hospital it is worth going there with a flare.
Now have a nice relaxing evening - or do the injections make you hyper?
hilary_76724 EileenH
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EileenH hilary_76724
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Last week a patient was told it definitely wasn't GCA because the biopsy was negative - and that was the "gold standard". Yes, if it is positive it is 100% certain - that's all, it isn't a reliable negative test. And an eye specialist said it couldn't be GCA as it was transient visual loss - which is typical in the week before permanent visual loss.
Heaven knows how we can spread the word - other than what we did this afternoon! Good luck tomorrow and do tell us what the man says in clinic.
hilary_76724 EileenH
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EileenH hilary_76724
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HOSPITALS ARE OPEN 27/7. THEY HAVE BEEN FOR YEARS AND WILL CONTINUE TO BE UNLESS THIS GOVERNMENT CHANGES IT.
They are misquoting the study about weekend admissions and death rates - the authors say so and I think we can believe THEM.
Wonder what my BP is...
Sorry for shouting and ranting...
bri21 hilary_76724
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EileenH bri21
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I'll just keep pluggin on...
bri21 hilary_76724
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was set to hospitail and started on 60 mg pred for GCA .I had tenderness to scalp and temple .no problems with jaw .test to prove condiction did not come true as hid by pred .
after 5 years have lots of problems and posibley never had neither , You have to got advise as GCA can be dangerous .But ask Question you are not a number .this site give good advise and support .They are people no better then us just a diffrent
profession
maureen63465 hilary_76724
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you have been treated very badly and they should have erred on the side of caution. A similar thing happened to me nearly 3 weeks ago but thankfully my GP made sure I was treated.