The added 5mg has done very little for my flare after 5 days. I therefore phoned rhematology department and was told next appointment was scheduled in 7 1/2 months time ! I’m flippin furuous - saw rheumatologist mid February because of suspected inflammation (had stiffness but no pain back then) who ordered lots of blood tests and said he would see me after the results. Maybe tests were OK but is leaving me until a flare develops really a good strategy ? The rheumatology department has been closed for a fortnight due to staff sickness and so I’ve been told to go to A&E. Whilst the rheumatologist does not think I have GCA, if I go to the GP with these symptoms they will probably have to whack me up to 50mg again just in case. Dad asked me how I was feeling earlier and just burst into tears.
Have to go to A&E to manage my PMR: The added 5mg... - PMRGCAuk
Have to go to A&E to manage my PMR
What exactly do you mean by - The added 5mg has done very little for my flare after 5 days.
Many find they need longer, which is why we say you can stay on the increased dose for up to 14 days. So I’d be inclined to give it a bit longer. Do you have any GCA type symptoms?
I think if you rock up at A&E they are likely to either up your dose to much higher if they think it’s GCA - or send you home with paracetamol if they don’t think it is.
If Rheumy department is shut due to sickness, there may not be a Rheumy on call, however they should be able to access your records and see markers are okay and that Rheumy doesn’t think you have GCA.
Your best bet may be to ring NHS111 - unless you DO have GCA symptoms, when A&E would be advisable..
GCA concerns: The right side of my head has been tender (even hurts when I brush my hair) and right jaw is hurting again. Mild pain from both shoulders to elbows. Increase in mild headaches. My vision is blurry but saw optician back in october who said eyes looked healthy. The rheumatologist spent several minutes pressing my head and muttered migraine. I’ve not had those symptoms in the 30+ years of having migraines however. It could just be tension but when they reiterate I’m too young and have normal bloods, I get scared, particular when no imaging has ever been suggested. We’ve been here before DL and you did suggested trip to A&E last time when I could not access rhematologist.
I’ve been sleeping on my left side for a while but struggling to turn in bed so often spend the whole night in same position. I’m sure this is why my costochondritus is so painfull again with left ribs in particular. While both hips ache, there is now much more pain in the left hip and weakness. It’s a struggle to climb stairs again. My shoulders are less painfull but feel so heavy and inflamed. It was colder last night and just pulling up the duvet is a struggle. Swelling in my left hand and foot increased again with stiffness in fingers/toes. Aside less pain in the sternum, all the other pain stiffness and weakness remains since increasing from 7 to 12mg five days ago.
As I said previously you may need to give increase a bit longer - and now you have fully explained your symptoms it’s no wonder you are worried. I think I’d still try NHS111, initially but they will probably advise A&E - so maybe that is your only option. But I’m still not 100% sure it is GCA… perhaps TMJ if it’s only one-sided. ..but always best to get it checked.
Please let us know what you decide to do, and the outcome.
Thanks DL. I’m seeing dentist soon but previously said to me she’s been looking at my teeth a long time and sees no grinding of teeth and thinks it is rheumatology related. When my PMR is under control, this pain goes away too.
okay... thanks..
Are you getting enough rest? As you probably remember from early days on pred, pred can't do it all, we have to do our part too, if possible I know life circumstances often make this difficult.
I’ve been vegetating in front of the TV all week. Did some batch cooking week before, so no cooking or cleaning and not even left the house until today which is probably why I was teary.
Some stresses you can’t avoid but I have literally cacooned myself from life last year trying to manage earlier flare and adrenal issues. It feels like mission imposible, particularly with the lack of rheumatology support I’ve had.
Hi Body_bonkers,
So sorry you're experiencing such a challenging period, but others with more knowledge will be along shortly to advise.
Unfortunately, life with PMR can be a roller coaster ride of health & sickness, fear & calm, battles & triumphs, wins & losses, questions & answers and more besides, but for every problem encountered there will be a solution and the 'trouble' will pass. Even when you feel like you're living your worst day.
That much I've learnt during the 6yrs I've been managing my ownPMR.
I recognise that feeling of confusion, when symptoms emerge and you've no real idea what's going on.... could it be 'this' or could it be 'that'! and why are interventions that you expect to help, not helping. It can be very frustrating, very confusing and very scary.
Sometimes it feels like you've lost all control, and maybe you have, but it'll only be for a short while.
So hang on in there because things will improve. I know it doesn't feel like it when you're in the midst of a 'crisis', but it will.
Thank you for those kind words Kendrew.
I agree with DL - the most likely action by the ED is to raise the pred. They aren't specialists and you are already under the rheumy even if you aren't able to access them. If you haven't got visual symptoms, it is unlikely to ring alarm bells in the ED either.
I don't know what the process is where you live, but in many areas of the UK they have a fast track protocol for suspected GCA. Where I live you would be sent to A&E to see the emergency ophthalmologist with a referral from your GP. I know because I have taken advantage of that process in the process. If you turn up at A&E, then you might have a bit of a wait, but it bypasses the need for the GP referral to the ophthalmologist. They should keep you there until all the checks have done, including seeing a rheumatologist if that is deemed necessary. That's certainly what happened when I was in that situation. If you can't get in touch with your GP urgently, I would call 111 as they can make an appointment at A&E for urgent cases to save all the hanging around in A&E.
I haven't scrolled all the way down the conversation as I have replied in a bit of a rush as I am on my way out, so please ignore if you are already fixed. Hope you get sorted.
Patient is already registered with Rheumy dept - but it’s shut through staff sickness which is why the problem has arisen.
But being registered with rheumatology wouldn't preclude anyone from accessing the GCA fast track procedure, assuming it exists in that area, do you not think, DL? When I was referred to the emergency ophthalmologist, the ophthalmology department was closed (possibly for a similar reason), but they are separate departments in the same building at Watford. I was seen directly. All it needed was for my GP to call them. Though I can imagine being Easter weekend makes things more complicated.
There are not fast-track processes in every Trust. There are no GPs working over the weekend and the ED is likely to be bombed. It also very much depends on the hospital. My daughter's ED has a protocol for patients presenting like this - but they are limited in what they can do, she would be admitted to the emergency assessment unit but would have to be transferred to the larger parent hospital for rheumatology assessment. And without good evidence of GCA, you might be well down the list to be seen in the first place. It is such a grey area ...
Not in theory, no.. but (depending on who is sick) there may not be any Rheumy staff available to consult. Plus not sure it’s a widespread as we would like, or led to believe.
No, that's the sense that I'm getting, about not being widespread. Watford General is really not popular round here, but perhaps the West Herts trust is not so bad, after all. 
I went to a local group this week to learn we have no permanent rheumatologist in county town… one from another hospital [part of the trust comes one day a week].. mind it never was brilliant in my day [but that was one person not department].
One lady recently diagnosed with GCA had to travel from one side of Dorset to the other, about 40 ish miles which may not sound much - and it isn’t if you have a motorway - we don’t, and not a lot of dual carriageways but plenty of traffic clogging up rural roads.
Same with me - c.40 miles to see rheumatologist and although there is some dual carriageway, it still takes best part of 2 hours
Thanks Gimme. When I first raised GCA concerns almost two years ago, the GP pushed my steroids up to 50mg with urgent referral but it was nearly four weeks before I saw the rheumatologist. I’ve asked about opthamology too but access is not routine so I’ve been getting regulsr checks with private optician as precaution
Seems to be a lot of variation in the process, depending what health trust you fall into.
Out of heart failure diabetes and rheumatoid clinics I find rheumatoid to be the !most difficult to get appointments and repeat prescriptions.I you get some answers
Thanks Doublef.
Hello Body_bonkers.
I took myself off to A&E having a sensitive and tingling scalp and worries about GCA. The Drs took it very seriously. I was put into urgent care immediately and after various tests saw a rheumatologist who examined me and came to the conclusion that she didn’t think it was GCA and more neurological. At the time I had started taking 2mg pred after reducing to zero (rheumatologist advice) for two weeks. My symptoms came back very quickly. To be on the safe side I was advised to take 5mg of pred and returned the next day for an ultra sound Doppler on my head. This was negative no GCA and gave me huge sense of relief. I have an upcoming neurology appointment as although the tingling sensation on my scalp has subsided it does return although it is milder. I hope you find relief.
Thank you Pangolin43. I would worry less if soneone just did some sort of imaging. Heard such nonsense from them about my PMR, it leaves me with little confidence they’d spot GCA
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