Hi. I’ve been hiding in the wings here for a while, gleaning information. My GP has now been treating me for PMR and, according to her Temporal arteritis/GCA symptoms for about 3 weeks now but I’ve had symptoms on and off for some time. I’m almost 50 and have always been healthy apart from having Sjogren’s syndrome for about 3 years. I have a positive rheumatoid factor (due to Sjogren’s) but all my other bloods have always come back ‘normal’. Since being on 20mg pred (had to increase from 15) prescribed by my GP my neck, shoulder, upper arm and lower back/girdle pain have cleared up (although not the fatigue). However, other symptoms that I have had on and off for a while have been getting worse for a couple of days now and I feel dreadful today. My neck is sore at the base of my skull radiating up behind my left and right ears, my temples are tender, as are other parts of my scalp, I have a headache and my eyes ‘hurt’ but are not blurry. The worst pain though is in front of my ears down to my jaw and it hurts to touch here. My throat, either side of my trachea is sore and my neck here hurts to touch, my voice has been getting hoarse over the last year. I have had pain in these regions on and off for years that I have always associated with the Sjogren’s due to the proximity to my parotid glands. It improved greatly at first with the steroids but is now back with a vengeance. I had an ultrasound of my temporal artery about a month ago due to headache and jaw pain which was all clear. My usual helpful GP is away until well into January. I have spoken with a duty doctor first thing this morning and he has made me an appointment to go in and see another of his colleagues at 5pm having told me not to increase my pred but if it was GCA then I should be treated as a medical emergency. I have always found these male GPs to dismiss my symptoms and to not take me seriously. I feel like going to A & E but don’t feel up to driving and don’t want to look a fool. Does the ultrasound I had rule out GCA? I don’t know what to do and feel miserable and lonely!!
GCA worries : Hi. I’ve been hiding in the wings... - PMRGCAuk
GCA worries
Oh my dear, I so feel for you. I have no experience of GCA only PMR but my instinct says you need help NOW. I wonder if another route might be to call 111 and see if they can fast track you to A&E. Get a cab if necessary. Good luck and let us know how you are.
I think that as my surgery is open they will just refer me to the duty doctor there. I’ve just spoken to a second duty doctor and he said an emergency’ meant I should be seen later in the day not in the hour 😔. He was so patronising and made me feel stupid.
Thank you for your reply x
Shocking reaction from your surgery. Please have the strength to try 111. The leaflet I have says its function is for clinician advice as well as an out of hours service. Thinking of you and worrying with you.
If your usual doctor says that she is treating you for Temporal Arteritis then your Pred dose is not high enough. Most people are started on around 60 mgs and a referral to a Rheumatologist is usual.
Like you I am not sure if a negative ultrasound result is definitive. PMRPro may know. I know the temporal biopsy can be negative when the wrong artery is tested.
I know that there are overlapping symptoms between Sjögren’s, RA and PMR, so it’s difficult to sort out a diagnosis . GCA stands out with its distinctive symptoms of an unusual headache, pain in the jaw when chewing, tongue claudication and yes ear pain too sometimes. You need urgent treatment and if you cannot make the other GPs in the surgery take this seriously, what about taking a taxi to your nearest A&E or even phoning an Ambulance. You wouldn’t hesitate if you had the symptoms of a stroke. This is potentially as urgent as that. Wishing you well, this is a horrid state of worry to be in.
PS Welcome for coming out of the wings. We will never patronise you or dismiss you.
It may have ruled it out when it was done - but those symptoms are not the sort that can be left, the GCA can progress, like any illness and you are now 4 weeks on.
You do actually have justification in calling 999 - paramedics in Yorkshire are taught to recognise GCA and to treat it with the same urgency as a heart attack/stroke. If you feel really ill you aren't safe to drive and there is also a risk of loss of vision which isn't a good look when driving.
See the patronising "gentleman" you spoke to? If you see him, ask him if he would say that to a potential heart attack or stroke patient - because GCA is also a potential ischaemic event and the ultimate result is as irreversible as those of a stroke that was ignored. We have often told patients who couldn't be seen "now" at the GP to go to A&E. You may meet an ignoramus there too - but there is a wider choice if you make a fuss.
Like the biopsy, the ultrasound is only any good when the GCA is present in that artery - it may not be or may not have been then. Did they look at any other arteries? Under your arm for example?
Thank you for your reply. I’ve decided I’m definitely not going to the surgery after the way the second doctor was with me. I’m going to lie quietly for a while and hope to pluck up the courage to call 999. I also have pain in my face where you would normally have sinus pain and it’s tender below my nose but further out, sort of above two of my outer top teeth - could this be associated with GCA at all?
It could but it is impossible to tell. I think you should at least give the 3rd doctor a chance - the first one was fairly on the ball even if the second was decidedly off. But I wouldn't leave it too long before calling 999. Remember to tell them that one doctor did consider it could be GCA and was a medical emergency even if he didn't tell you to go to hospital and that you are alone and unable to drive there.
Make that telephone call now...................if your sight goes either partially or totally, that is it.
Yes that sounds harsh, but it is true.
It happened to many people in the past and these forums have been set up to help.
Do it now please, PMRpro has given you good advice.
Thanks for all your help, I’ve decided to drive to A & E though rather than call 999 or see the doctor. That way I’ll feel less like a fool!! I’ll keep you updated and do appreciate all of your advice xxx
Please never worry about going to A&E. You aren’t meant to be a doctor and recognise an emergency. No one will judge you.
You are not alone, please don’t let yourself feel you are. I know it isn’t easy to make yourself feel something you don’t feel but put it like this, I bet if I wrote the post you did! you would be responding - of course you should go to A& E if you have any doubt at all.
I don't know much about Gca but do go to A&E, you have every right & very sensible with those symptoms. You need assessment and reassurance. That's what it's there for. Hope you feel better soon x
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