Now, the Daily Mail isn't normally my favourite newspaper, but today it definitely is. The Mail has published a long and really good feature on Giant Cell Arteritis, the tragedy of people who lose their sight because of it not being diagnosed, and the scandal of doctors who don't see what is right in front of their noses.
Some of these stories make really sad reading, and it is terrible to think that it is such a waste, because but for the sake of steroids costing a few pence, and a doctor having the wit to try it out, somebody has gone blind forever and there is nothing that can be done to put it right.
Please read this article. If you have GCA, tell us how you got on with the diagnosis. If you have PMR and are under treatment, thank your lucky stars that you are probably safe from any danger of this happening to you (but be aware). And above all, tell all your friends and everyone you care about what the symptoms are. And hopefully within the next five years we can Stop GCA Blindness!
I got a headache today and tenderness in my scalp. I was diagnosed with PMR 18 months ago, therefore, am on guard for any symptom that might be GCA. 2 ibuprofen sorted the pain. I will still be on guard for any head pain in the next few days. Because I have PMR and am on 7mgs of pred I am pre-warned as to how the illness could excelerate. I have just got over a virus in 4 days. I suppose the headache could be part of the virus or caused by the very humid weather we are having in the west country at the moment.
You are right. The symptoms of this tragic illness, GCA, and what is frequently it's precursor PMR are often missed.
Since developing PMR 18 months ago, I have realised that many G.Ps. are so uncertain as to how to prescribe steroids and so wary when confronted with the potential side effects that they shy away from giving them in the first place. I feel that I was given a pretty high dose initially, 30mgs, which knocked my PMR for six. The G.P. who prescribed this dose had a good experience of this illness. She was right. I was down to 20mgs in two weeks. Sorted. Oh no. When I saw my own G.P. he said he didn't think I had PMR, just a wrench injury. I came down too quickly on the pred. and by the time I saw a very experienced Rheumy 7 weeks later I was only on 3mgs. He was certain I would have a relapse, and I did. Back up to 30mgs again.
I'm now down to 7mgs and taking the drops real easy. I have my off days, and I don't push my body. It's true, I've had a lot of side effects, but knowing the cause is half the battle. I know that if I pace myself and drop the Pred. in tune with my symptoms, I will be in with a chance of beating this illness.
I read the article online. I am eternally grateful that my doctor decided to test me for GCA when I had earache, headaches and very stiff shoulders. Her words to me when I had no dental problems, no swollen glands and no sore throat, were "There is just one other possibility so I'll do a blood test. I don't think for a minute you've got it, but we'll rule it out anyway." The next morning I got an urgent phone call to go to the surgery immediately and put straight on to 30mg steroids, which seemed like an instant cure at that time.
Little did I know then but 3 years later I am now on my 4th cycle of high dose and reduction because each time I reach 5mg the symptoms all come back. I have just had a brain scan and am awaiting results. Personally I'm still convinced that I have PMR/GCA and with painkillers, am living with it and enjoying life.
I'm taking my 2 grandsons to plenty of Olympic events in the next three weeks and looking forward to cheering with the rest of the GB supporters, even if I am exhausted by the 10th August. At least I have my sight and can watch these events!!!
i found out i had GCA through the fact that i couldnt even put my head on the pillow it hurt far too much, its not like a headache is a terrible pain (soreness and pain) totally different from a bad headache, i was 46 when i was diagnosed thank goodness i had a doctor that trusted her own instincts rather than the specialist she sent me to who trusted the books, my doctor has been amazing and i am now down to 11 mg predneselone daily and 8 methotrexate a week
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