Well had a flare-up of GCA last night - came on suddenly at about 6 pm - severe pain over right temple - terrible pain on moving head. Rushed to A & E - had difficulty explaining to receptionist but only had to wait 10 minutes to see the triage nurse and told her that it was an emergency as I did not want to lose sight. Saw doctor 5 minutes after this. He sat me down and said so you have GCA - well I will up your dosage immediately - take blood samples - he was very knowledgeable about the illness and moved swiftly to give me 60mgs of preds and to get the blood samples taken. Long wait for results of blood tests but at least I had got the preds down and felt very safe. Doctor checked me every 15 minutes whilst waiting and finally he got the results through - ESR was 20, down by 6 from the last test 2 weeks ago but the doctor took me to the receptionist and insisted that she made an appointment for me to see the ophthalmologist tomorrow. In the meantime whilst waiting for all the results to come through the doctor had been to give a talk to the receptionists and nursing staff about GCA and how it must be treated as a matter of great urgency. Well done that doctor!
It turns out that he had diagnosed a patient with GCA - put her on preds immediately and referred her urgently to the ophthalmologist the next day - who changed the diagnosis and took the patient off the preds - patient lost the sight in both eyes and sued the hospital! Doctor adamant that this was not going to happen again on his watch!
Wow! As you say, well done that doctor. Hope everything goes well with the ophthalmologist tomorrow. 60mg is a bit fierce (been there, got the t-shirt, but kept one eye, so it was worth it). Although I wasn't too sure at times! Good Luck. Keep us informed please. Dorset Lady
Thanks for your support. It just makes me so angry that losing your sight can be prevented, even by taking the devil's pills, but people like you have had to suffer. I admire your courage and value your support.
Oh Margaret, what a disappointment for you but, unfortunately, flares are quite common in the first 12-18 months of treatment. Well done on seeking prompt investigation, and what luck to come across such a caring and knowledgeable Doctor. I hope the ophthalmologist is just as knowledgeable tomorrow. I hope all the pain has resolved with the extra steroids.
Yes, it was a huge disappointment to have cut down so far to have this flare-up and go backwards with the treatment but reassuring to have come across the correct and prompt treatment without a fight. Headache gone now but now the side effects of the preds are cutting in again, but at least I have the sight of both eyes so am very lucky. Thanks for your support it means a lot.
Margaret - I'm so pleased to hear that the headache has resolved. The side effects are not any fun but with any luck you may find you are able to get down on the steroids a little faster this second time around, at least down to the dose at which you last felt pain-free. Not quite so easy, I know, when you don't have ESR and CRP blood test markers to guide you, but at least you did have the warnings of the head and temple pain and were able to act swiftly. Take care.
So sorry you had a flare up and this scare. I have had one major flare up in the 18 months Since being diagnosed with GCA. Thank goodness your doctor was on the ball.
We need to spread the word re PMR and GCA and make everyone aware, not just the medics, of how serious these conditions are and how to manage them.
Thanks for your support - I belong to a knitting forum which covers the world and I am going to spread the word on there - I feel so strongly that the message about this illness should be spread far and wide.
So pleased you were treated by such an efficient doctor. It is so important for us to ensure we are listened to and that takes some strength of character. I have been to several doctors and the practice nurse in our practice and they admit to not knowing about GCA, I find this appalling.Thankfully I have a great Consultant and there are some in the practice who do understand the condition.
Hope things settle down for you soon and well done for acting promptly.
I was advised always to carry 40 mgs of pred as an emergency supply. I used them once as I knew the symptoms well. It is not uncommon to have a couple of flares within the first 18 months.
Really glad you found a doctor with sense, i had the same in Harrogate during Christmas and New year and i had the same service so maybe PMR and GCA is finally getting noticed as being in need of urgent attention.
Great to know ER are away of GCR i lost sight in one eye and as Pat say,s i still live in fear of any thing happening to other ,in my case i had so little warning ,happened over night few symptoms ,still and will remain on predisolone for life ,,maybe if we where given more iinformation we could protect our self,.So glad al well with you Take care
Hi Margret,
What a story! I too had a relapse whilst on hols in Snowdonia in 2011, and at the local A&E a GP who really knew his stuff had no hesitation in slapping my pred up high again because of my symptoms. He, like your great doctor, was taking no chances. It worked - the GCA symptoms went away.
It's been a rocky old ride down the doses ever since, but now on 6.5mg and the PMR seems to have dozed off.
There are many docs, I'm sure, who understand this illness, but in many ways, it's the luck of the draw.
I remember that, right from the start, you've had to fight hard. Well done!!!!
Pats.
Thank you everyone for your support and comments - what would we do without this 'family' of sufferers. Opthalmologist have given me the okay today - no damage to the eyes. Rheumatologist rang me and has given me a new schedule for tapering the steroids.
Thanks everyone and I hope that you are all feeling better soon.
That's good news indeed from the ophthalmologist and just what you needed to hear after the trauma of the last few days. Good care from the rheumy too - does the new tapering schedule appear a little faster this time around?
Although those of us over a certain age are entitled to a free eye check once a year, anyone with GCA can be seen twice a year, plus my optician told me to come in at any time I felt concerned.
Hi Margaret,its good to know you got the right treatment immediately, I dread the first time I get a flair up,like most of us with this scarey disease i too am terrified,that's gold advice regard taking some extra preds in handbag,
hope you are feeling better very soon.I went to options on Friday only to find out a have got cateracts starting in both eyes,due to the high dose of steroids have been on for such a long time now.along with all the other things that have happened since I got GCA last year.any way margaret I do hope you continue to improve, kind regards Anne (ritter)
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