I have concerns because my symptoms started with stiff neck (february) , severe fatigue early June wiyth shoulder pain a, back, hips and thighs mid-June. Headaches from mid-june which cover whole scalp and have beenlinked to cervical discs as the headache is not temporal. However, in my eye test some small bleeds were found in my right eye which were worse one week later. I have an eye clinic appointment on July 19th. I have only today learned of the link betwen GCA and PMR . With the constant headaches I begin to get unsure whether there is temporalinvolvement. My scalp is not tender but is tingly. GP tried to get me a quick appointment with a rheumatologist but the only way is through A&E. A& E here is carnage - I could be there for over 24hours. Any advice?
Newly diagnosed PMR but scared: I have concerns... - PMRGCAuk
Newly diagnosed PMR but scared
Hi and welcome,
Any new headaches do need to be checked - whatever the cause.. and GCA headaches aren’t just temporal - they can be all over. Tingling is also a symptom.
You might get more from the eye department, but you also need a Rheumy’s input.
The eyes bleeds may well have been the Pred… have they now gone? Have you tried ordinary painkiller for the headaches… if so, any relief at all?
As you have appointment next week, maybe hang on for that so longs as things don’t get any worse … but should symptoms deteriorate, in any way, then A&E it must be.
In the meantime- maybe have a look at this -
healthunlocked.com/pmrgcauk...
But if you need us, we are here, so, please contact.
eye bleeds were both before - only started meds today!!
Okay…they aren’t usually a sign of GCA
Painkillers do help - the headache - GP did ask about scalp tenderness but I said no because it is not tender - only on reading here to a realise that symptoms can be variable
Mine were more like neuralgia pains -and probably good news that painkillers do help.
Hello. Sorry, I can’t work out if you have been given steroids by the GP but are getting these head symptoms or that the GP has done nothing and wants a Rheumy to advise first. If you are on steroids, what dose are you on?
The pain doesn’t have to be in the temple for GCA. Mine started in the neck, base of skull and my scalp became uncomfortable. The tender temple was less bad than the scalp in the end.
Started on 20mg prednisolone today
GCA eye issues are due to lack of blood flow to the optic nerve which tends to cause visual disturbances like blank spots or patches of no vision or blurriness, double vision.
The 20mg should start to help PMR pains in the next week. If you start to deteriorate, as DL says, you may need A&E. It can be difficult if you have other issues that can cause similar symptoms.
eye bleeds can be due to retina problems so it will be good to have your eye clinic appointment. They can do an OCT scan which should help with a diagnosis
A consultant’s referral seems to be an open sesame for being seen more promptly and to be taken more sincerely. An Opthalmologist is a good idea. This is the biggest danger facing you - your eyes.
How long have you been on Prednisilone and what's the dose?I had undiagnosed PMR for a year, as the pain I suffered was put down wrongly to fibromyalgia (Hips, shoulders, neck, massive fatigue)
I then became poorly, struggling to turn my head due to stiif neck, headaches, fatigue, extremely tender scalp, unable to wear glasses as uncomfortable behind my ears, couldn't bear brushing my hair.
After a month of the above, I woke up blind in my left eye. My Husband rushed me to A&E, after many tests they found I had bleeds on my left retina, it was very bad. Bloods came back with high CRP.
I told them my mother had GCA and PMR symptoms.
They gave me 60 mg of Prednisilone and told me that there was nothing more that could be done to save my sight, the inflammation in the left temporal arteries had restricted blood supply to the eye and the vessels were blocked.
However, a miracle occurred, as after 24 hours on Prednisilone my sight returned. The consultant said it is extremely rare, but my body had made new pathways to restore blood supply to the eye. It was literally a miracle.
So, if I were you, I would push for bloods to see what your inflammatory markers are doing, and ask for an ultrasound of the temporal arteries, to see if they are inflamed.
If there is ANY change in your sight, you must go straight to A&E. It is not worth risking your eyesight.
All of this happened to me when I was 59. My Mother was diagnosed in her 80's, so I wasn't expecting it in my 50"s, which is why I was originally misdiagnosed with fibromyalgia in the first place.
I hope you bought a lottery ticket 🙏😂. so pleased to read a positive outcome in the midst of things. I have no diagnosis for my problems and have had multitude of them including the stiff neck ,headaches, fatigue, tender scalp with balding spots, extreme weakness. many rashes and skin complaints and numerous other problems. I held a diagnosis of fibromyalgia before symptoms raged and then and now cant find fibro fitting. I have had ptosis for many years which sometimes but more rarely now fluctuates ,I get blue sclera on occasion been very blue , dry eye, and floaters.It is a long story but to cut it short at one point I was asked if anyone had mentioned pmr to me? no one had or has. This morning I awoke with a massive headache and painful temple side of ptosis but I can see ok 🤷♀️ and am awaiting ophthalmology appointment. so hope somewhere down the line to get a diagnosis.🤞
A bit off track but wanted to say 🙏thank goodness for your miracle 👏 and as for fibromyalgia do you find its fitting despite other problems you've had? or as you say a misdiagnosis. I do not find fibro fitting and indeed my health problems have progressed and did not see fibro as progressive and fear many diagnosed fibro as a cover all when it may be a problem but does not rule out anything else, and seemingly if you have a diagnosis of fibro other things not taken seriously but put down to that 🤷♀️. my experience anyway.
best wishes
Fibro and PMR may have many things in common - EXCEPT the response to a moderate dose of pred. IMHO, fibro is a diagnosis used by lazy and/or incompetent doctors who can't be bothered. There is no cure and no treatment and they hope the patient will go away and stop bothering them. Fair enough - the pain and stiffness and the trigger points can overlap but there is no real excuse for not trying pred as a diagnostic tool.
Indeed. Fibromyalgia and chronic fatigue syndrome (CFS/ME) are convenient dumping grounds. A private neurophysiologist was carrying out EMG/RNS on me when he casually said "you've probably got CFS". He clearly hadn't read my notes. I pointed out that I'd already responded strongly during three courses of prednisolone. He went quiet, finished the tests, and declared them all clear. I now have evidence he was testing the wrong muscles!
Well yes I agree there , and my response to steroids leaves me in no further doubt that its not fibre and the remaining symptoms do not fit either , fatigue and brain fog are the only symptoms rheumy puts down to fibro diagnosis and the rest an ununifying diagnosis. say no more as those symptoms cover much. inflammation was one of the biggest responses to high dose red and skin eventually (not all improved) and brain fog pain and stiffness. though returning pain is less ,but weakness especially on exertion remains fluctuating. never had pressure points just one in chest.🤷♀️.
I agree pred as diagnostic tool good if seen before and after 😡I was not.
I think there's a real problem with how most doctors interpret patients' complaints of "tiredness", "fatigue" and "brain fog". Firstly, problem "tiredness" can mean sleepiness when you shouldn't feel sleepy, or exhaustion when you shouldn't feel exhausted. Feeling abnormally tired or fatigued before you've done anything is different to feeling abnormally tired when you try to complete your daily routine. It is normal for "brain fog" to set in once someone is exhausted, regardless of how much, or how little activity it took to become exhausted. For me, as I am now, an hour's light gardening leaves me as exhausted, stiff and in pain as my mechanic friend feels after his commute and an 8-hour shift. Both of us feel the fatigue and brain fog set in by then, but only one of us is ill.
Only started prednisilone yesterday - on 20 mg. Today is the first day I have woken up able to put my underwear on without a struggle so I guess that confirms PMR. However, headache is constant today and scalp feels tight. My inflammatory markers CRP is 49, not yet had ESR tested. Still pondering whether I should go to A&E today re the eyes as I know there is a problem there . Mt stiff neck started first in February but fatigue and muscle aches started in June. It is possible that the neck stiffness isr related to deterioration in cervical vertebra. I had an MRI for that 2 weeks ago as i thought it all stemmed from there. Consultant cant see me to discuss results as he is on holiday for 3 weeks!! Very confused what to do
If in doubt then A&E -—and rather today than leave it to weekend…
It is a worrying time for you , only you will know if you feel the need to go to a and e or could you go and see optician for eye health tests which may be helpful best wishes
Seeing optician tomorrow morning early - hopefully that will give me more info
let us know how you get on 🙏
Optometrist checked eyes this morning. No changes but she feels the presentation that she sees is not associated with GCA especially as I don’t have jaw pain. More likely venal occlusion. Headache still present though .
So what is she recommending regarding the venal occlusion ?
.. you don't have to have ALL the listed symptoms for it to be GCA. Plus I would still want answers on the headaches.
I know it's difficult, but you have to keep pushing for reasons for your issues..
Well im glad you got them checked but still no answers so as dorsetlady says I would still want answers and keep looking for them, I am 5 years plus looking for mine and wont rest until I find them . I have had ptosis that long and sore scalp off and on but in health service it's a battle but you must do that. best wishes and hope your appointment goes well this week but if worsens or unhappy id go to a and e .
iFyou know your local A&E is ‘carnage’, then I understand. I think everybody thinks that in England now. I’ve been through A&E here 3 times in 7 weeks with my husband, and it was orderly, fast, they had sufficient staff, & no ‘carnage’ at all. My husband had immediate treatment (but he was an ambulance case), x-rays within 30 minutes, treatment of antibiotics within 45 minutes & a bed on a ward within 2 hours. Other people I saw in the ‘walking’ queue were fast, there were lots of spare seats, nobody in corridors. I guess my advice is not to just read the news stories re A&E, in some places they are wrong. This was In Wiktshire. If you know your A&E is dreadful, I’m sorry. But if you have GCA I think it’s the place to go!
Supposedly, some areas have a fast track protocol in place for suspected GCA, though I have no idea how widespread that is or if it is a formal process. When I had issues with my eyes last year, the surgery rang through to the ophthalmology department and I was seen next day, so it seems that it might work here. I am in Hertfordshire and that was Watford General, which has an appalling reputation locally, but they were fantastic, so I would view reports of "carnage" with an open mind. Sometimes, the reality is not what you expect. You could speak to the surgery and see if they can get you an urgent ophthalmology appointment, if you are still worried.
There is a formal process-but as always depends on local resources..
I had severe pain in my right eye a couple of weeks ago and went to A&e expecting hours of waiting. Instead I was seen almost immediately and a long set ot tests began. I was impressed by their thoroughness but they could find nothing wrong. I've been back twice for follow up tests and was discharged this week. The pain has completely gone. I now think it may have been a migraine. I used to get them but not since the menopause and this was far worse than any I have had. False alarm perhaps but everyone stressed that I did the right thing going to hospital. Ps. When my husband went with abdominal pain he was there for 116 Hours!
Are you on blood thinners, such as warfarin?
Do you take medication for high blood pressure?
No blood thinners - low dose for high blood pressure but doctor has asked me to keep a BP diary so she can review if we need to up the dose
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