I finally got to see my GP following a GCA flare following a GA for a colonoscopy/endoscopy 7 weeks ago. I have been treating myself following headaches and a touch of jaw claudication but aware that if things got worse I'm close to the hospital. I started taking 25 mg prednisone which is the same I took initially 4 years ago after diagnosis but have been see sawing up to 30 and 35 to try and rid myself of some scalp tenderness.Anyway GP now a bit nervous of the GCA. He was happy to assist with PMR, the only symptoms I had for 4 years and a taper down to 3.5mg. So he wants me back with a rheumie. The first 2 sounded wonderful but the first appts I could get were 12 months and 10 months. I now have a cancellation at the end of March. They're like hens teeth here in Sydney. Not a popular profession. Now just waiting for results of blood test and I'll battle on.
Reporting back: I finally got to see my GP... - PMRGCAuk
Reporting back
That really is ridiculous! Even in the UK you would get advice from a rheumatologist if you went to the ED. GCA is a medical emergency - just like a stroke or a heart attack. Would you have to wait a year if you had one of them?
If I'd gone to ED I guess I would have seen one or still could.
I'm not sure you would Pro! I had cause to get some headaches and a visual 'disturbance' I'd experienced, checked out on Saturday. I went to my opticians first, where a 'Saturday boy'!! triaged me with a form, took it to show optician who then told him to tell me to book an appointment this week!!..... despite me explaining the urgency of a check for potential pointers for GCA.
I then took myself to Urgent Care. Filled in another form where I explained my concerns (verbally too) but again, no one seemed to understand the urgency of the situation and I waited THREE HOURS to just be triaged and then be told by a nurse there was no eye specialist or rheumatologist on site to see or speak to me.
She was very dismissive of my sense of urgency and clearly had absolutely no understanding of the implications for sight loss should my symptoms be GCA. No blood tests were offered and certainly no scans. It was incredibly scary.
I've since been attended by an ambulance crew and been seen by my own GP today. All is okay. Full eye test & review tomorrow.
So frustrating to be made to feel like you're just an over dramatic, neurotic patient who's just a hypochondriac!!
Sorry to hear this Kendrew! Not good enough is it?
Glad all is well though x
That's not at all reassuring Kendrew. I suspect it would be the same here. You're never 'urgent' unless you come in an ambulance!
You aren't necessarily "urgent" if you arrive in an ambo either - if the paramedics consider you to need urgent treatment they pre-alert the ED. Otherwise it does depend on the reason you called that ambo. Even a broken leg isn't urgent if it isn't open or displaced and causing critical ischaemia or potentially bleeding. You might be triaged more quickly.
CUES and UC are not the ED though - and at night or the weekend the ED doesn't have a rheumatologist or ophthalmologist on duty on site unless it is a 24/7 one in an Eye Casualty, and they are few and far between, But there IS one at the end of a phone who would come in if deemed appropriate by the ED consultant. And the best pathway is via 111, to whom you CAN explain the urgency and then you would go to the OOH doctors or be pre-alerted at the ED.
Was that a CUES optician? If so, they should be reported for not appreciating the urgency.
It used to be that patients were told to always keep a single high dose of pred to hand, checking the expiry date, and then if they had visual symptoms to take it and seek medical advice. That one dose buys you time.
I visited my optician on the Sat afternoon and when I went to UC the information sheet they sent me home with showed them listed as part of the CUES opticians scheme.I had actually tried NHS111 but the call dropped five times before I even got to an 'option' to speak to someone. Hence going to UC.
The night the paramedics came, they were happy for me to stay at home and see my GP next morning, and said when they'd left Colchester ED to come to me, there'd been twelve ambulances unable to 'hand over' because it was full...... mainly flu, covid & norovirus. So challenging for them..... and the ridiculous thing was, that I had THREE paramedics attend me! This was simply because they had a large number of staff on duty but not enough ambulances to accommodate them all, so they were having to put an extra crew member with some of the normal teams of two! How absurd is that.
Says it all - my daughter has been on nights in the ED and it has been manic. It isn't the ED that is the problem - it is the main hospital doesn't have enough beds so no flow. We've been saying this for about 10 years - I saw a post of mine in my Memories on FB.
The two nearest hospitals to me (one is Southampton - a large hospital) have put huge signs onto social media, & other communications saying they are filled beyond capacity 24/7. They had said you must only attend their A&E in a life threatening emergency or a likelihood of losing a limb. For anything else, travel to a different hospital, or use local medical facilities. We realise that signs of GCA are urgent, but I think we’d be turned away here…don’t think we’d get triaged in 3 hours…I’m not saying you had the correct treatment, I’m just saying that I don’t think people realise what a state the hospital system is in atm. Getting an ambulance is quite unlikely as they can’t unload the other end. The system is ‘blocked up’, basically! As PMR Pro says, there is no flow…the input has to close if you can’t get throughout & discharge people! A friend if mine’s father was discharged with heart problems while his BP was 220 systolic. Just warned he was in stroke range. They needed his bed for somebody sicker. A sad time.
That's so scary and incredibly challenging. I understand completely about the 'flow' issue and wasn't in any way criticising the staff. I was just hilighting how impossible it is to source what you need at the moment. I know that the paramedics were really disillusioned and fed up too. Everyone is just trying their best in a system that's on its knees.
So many poorly people.
It’s no fun. David is coughing badly, & had pneumonia twice last year. We are shielding, if we go anywhere, it’s white FFP2 masks. Neither of us dare catch even a cold! When I fall down I just hope I’m not injured (currently being referred for 3 ultrasounds for swollen foot, shoulder with hardly any movement & swollen forearm with lump in elbow). Fortunately, after waiting 3 months I got a 45 minute consult with my Dr yesterday, & now have a direct means of reaching him & bypassing others. He called it a ‘mammoth consultation’ in my notes. My BP is too high, but he daren’t up my meds as my hypotension is bad atm (stood up & passed out into a corner of the wall & the Sainsburys guy wanted to call 999!! David was out). Oh, don’t worry, I know you weren’t criticising the system. But just as your post highlighted the conditions to rest of uk folk on the forum, I added mine to alert people to a real problem. I’m not so sure many people realise how bad it is, & more people may wish to prevent sickness (mask wearing, no indoor crowds etc). Much of the problem appears to be flu that is so bad people need hospitalisation, covid & RSV. It helps to know the issues if you go to A&E, too…food, drink, phone fully charged, mask etc! Take care, & i hope you are OK, & don’t have GCA. S x
Sorry you're dealing with so much too.You're right when you suggested that more people should take precautionary measures to protect themselves. We have to take responsibility for keeping ourselves as safe as possible from contracting these viruses and bugs.
Hope you're okay too.
Kind of you, thanks. This is normal for me now, sadly. With 12 named diseases, oh & now costochondritis & other issues, there’s something going wrong all the time! For me, polymyalgia is the easiest to manage. I’m used to the side effects of steroids, &, thanks to this forum, know what to do for tapering & flare ups. Hypermobility is giving me more problems, when a joint is dislocated & you are just expected to ‘pop it back in, it will be easy’, & sprains & strains happen often & I hadn’t realised,until yesterday, that it affects all your tendons, they become loose & ‘float around’& tendonitis is likely to be frequent. I had 4 vials of depo medrone pumped into me to help bad arthritis in mid December, that helped a bit. Mainly, its a right pain! Just hope you’ve escaped GCA. It’s something I keep in the back of my mind for urgent action, for sure…but preferably not at a weekend! Thanks, S xx
The ambo service was getting the blame - but this last week or so a study has broadcast the truth that it is the lack of hospital beds and people to staff them. Not the ambos - a policy of cutting beds over the last 15 years. The thought of returning to the UK as it is is really scary.
Oh my days K,unbelievable to say the least!Supposing it had been worse?Just don’t get it do they eh?Maybe need reporting to PALS.So glad you are ok though.Taje care eh?xxxx💐💐💐😜
Sorry you have been left without proper support. In light of this I will describe the regime I have gone on following two GCA flares (increase autoimmune activity following other illnesses) this year, the first from almost 0 pred.
The first move was to use the protocol described on the forum - it's in FACs - of increasing by 5mg. As this did not work, I contacted rheumy and basically went up in 5mgs until the symptoms were controlled. First time they were very quickly controlled on 15mg. Second time I had to go to 20mg; I was still experiencing symptoms at the end of a month but went down to 17.5 and they are now much better.
Seesawing is not good. If you are going up and down from 25 to 30 and 35 to get rid of every last bit of scalp tenderness you are likely to be counter productive. Pred may only control up to 70 per cent of symptoms. I have had previous experience of going up to 30mg which made no difference to minor symptoms but made me feel muzzy and hideously ill.
Here is something to discuss with your GP until you see rheumy. Can you find a dose that manages most of the symptoms and stick on it for a month and monitor how it goes? Perhaps 20 or 25mg. You need to feel GCA is getting stable, rather than worse. However, it is important to note that it can vary a lot day to day - it's an overview across the month that is needed. (I don't know where you are now but you can go down from 35 or 30 at 5 a week - may feel a bit rough, though. If you have been on higher dose for around ten days or less you can go down to your previous dose.)
On the tapering side, for future info once you are stabilised, because this is not my first bout (4 years in) rheumy is taking me down at 2 week intervals, dependent on symptoms of course. This would be something to consider with rheumy in March.
I'd be grateful for PRO and DL and other experts' views on this.
Thank you Viveka. That makes sense. I'm desperate to get back to a lower dose as I'm trying to get by with 2 to 3 hrs sleep. I'm at 30 again for 2 days and no scalp tenderness. I was going to try 25 today .
Hi. There is a vasculitis specialist located at Randwick in Sydney, his name is Professor Anthony Sammel. I came across him when I was living in Sydney.
I now live in Tasmania and am fortunate enough to have a physician who specialises in vasculitis who sees me every 2 months.
I have GCA.
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