I have had constant headaches for years, put down to Cervical Spondylitis. Now with PR I sometimes feel that my eyes are going to burst and get stabbing pains in the side of my head. I also find my partner moving around in bed hurts my fuzzy feeling head. I'm wondering if there are tests I can have?
With a condition like this I feel that the GP dreads me with my vague and multiple symptoms. I try to be informed and concise. The PR diagnosis took a bright young GP fresh from medical school to spot. I'd been going for years with flu like symptoms and joint pain, I was given blood tests etc. that always came back clear.
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SheffieldJane
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If you have had constant headaches for years then it is fairly unlikely they were due to GCA (not saying it COULDN'T be though, never say never). Unfortunately there are no simple tests you can have that will confirm or rule it out. In 80% of patients the blood tests you mention remain stubbornly normal, as is also the case for PMR, and they have obviously been done often for you. It was the same for me - 5 years of "your bloods are normal, there can't be anything wrong"!
GCA is primarily diagnosed on the basis of the symptoms - severe headache, scalp pain/tenderness, jaw claudication (pain when chewing which goes away when you stop only to return when you resume) and visual symptoms are all common. There are other things such as cough and sore throat as well as PMR and the flu-ey feeling you mentioned amongst others. None of these appear in all cases, they often differ slightly from patient to patient, and therein lies the problem.
The only 100% certain diagnosis is by obtaining a positive biopsy in the temporal artery - but that only happens in well under half of cases. There are a lot of reasons for this - the GCA may not be affecting the temporal artery at all, even if it is it is not evenly spread through the artery wall and there are what are called skip lesions. It requires an experienced surgeon and histopathologist (not always a given) and the chance of finding the cells is reduced once patients are on pred, especially at higher doses. Another way of looking at the temporal artery (it is used for the biopsy because it is the only easily accessible artery that can be dispensed with) is with ultrasound - but this isn't yet widely available in the UK. A study was done and the doctors involved learned how to do it - some are research professors! It is done in a few centres where these people work but not in smaller ones.
When you say "hurst my fuzzy feeling head" what do you mean? And where are the stabbing sensations you mention? Have you ANY visual symptoms of any sort?
Thank you for your comprehensive reply. My head feels congested and my eyes swollen, it worsens if the bed shakes when my partner does his usual getting comfortable flopping about. It would be funny but I've misplaced my sense of humour for the moment. It's as if the contents of my skull wobbles about painfully. My scalp is tender too. Much worse in recent weeks.
Interestingly a vomiting bout ( very embarrassing) on a long haul flight that I assumed was a nasty gastric flu virus heralded a worsening of all symptoms, I could hardly walk, ultimately led to the diagnosis of PR.
I have Grave's Disease ( Thyroid) so over the years I have put my symptoms down to that and Cervical Spondylitis. I suspect PR has been present for years.
The medical profession never seem to link up your various conditions and medications. I haven't been offered a card or bracelet to indicate steroid use either.
I had severe jaw pain last year and was put on a 24 hour heart monitor and told it was normal. I also had a scratchy throat and an extremely irritating cough that would make me sick. I get the odd stabbing pain in my temple that thankfully lasts only a few seconds.
Obviously the prospect of sudden blindness is extremely frightening.
I feel a lack of credibility when I visit the GP and try to ration what I say. I think there is an issue about post menopausal women being dismissed by the Health Service.
All that you describe there are things I have heard GCA patients list - including the vomiting. The tender scalp is typical and the other things are listed.
The steroid card is a very hit and miss affair - some doctors have claimed they don't know about them! - and it seems to be up to us to do something about it. Ask at your local chemists, they should have one if the GP practice doesn't. There was a shortage a bit back and the northeast support group financed having some super-dooper ones for their members. They also have a good website with a lot of info and helpline:
I'm assuming you are in or near Sheffield? The NE group have a support group based in Middlesborough - maybe a bit far but contact with that group may result in some suggestions for referrals. There is a superb GCA/PMR group in Leeds, at Chapel Allerton hospital, and one lady with atypical GCA travels from the south to see the group there under Dr Sarah Mackie.
I realise your problem is going to be to get a referral from an obviously fairly disinterested practice. Is going privately an option? Except as an emergency the NHS will be ages probably since it is school holidays and that plays havoc with clinics - after all, good doctors are often young and have children. It might be worth trying to contact Helen Twohig at Sheffield Uni - I just googled her name and her academic profile was at the top of the search list for me. Sarah Mackie doesn't do private work unfortunately but Mike Plant at Middlesborough does and another man in Chertsey is worth the journey! You'll probably have seen his name on here several times - but it is a long way south.
In the meantime - if any of those symptoms get any worse go straight to A&E at the biggest hospital with a rheumatology department you can find and get to. Especially if you have any visual symptoms - from double vision at any point through the expected things such as dark patches, "TV interference" types of effect or the feeling there is a curtain across part or all of your vision. If your eyes are affected - dial 999. They should respond immediately since that could also be a sign of a stroke.
Have you taken anyone with you to the GP appointments? Is that young doctor who diagnosed the PMR still available? If so, insist on a appointment with them to discuss it all. If not, see another one but take your partner or someone else who won't be cowed by a disinterested GP. It is amazing how that can concentrate their minds.
I'm not ripping up GPs, they have a dreadful job at present and are awfully overworked - but they do have to recognise when they should be referring on and you should be, preferably as an emergency. Urgent is not good enough, especially at this time of year, it can mean at least a couple of months anyway. Yorkshire Ambulance Service crews are taught about GCA and that it is a medical emergency to be taken to A&E. If they know about it - so should other frontline healthcare professionals.
I appreciate your care in responding to me and will follow your suggestions. Leeds is not too bad from Sheffield and perhaps I am being self limiting in my interactions with GPs from my surgery. I hope you look after yourself as well as you look after others!
I live in Barnsley and was diagnosed with GCA at the end of February by a very clued up GP. Unfortunately that GP has since left our surgery but the senior GP has taken an interest in me so I see him every month but as he says that not a lot is really known about this condition it's difficult to know whether symptoms are due to the condition or the medication. It's all very frustrating and also quite scary as you're never quite sure what is happening or what you should be concerned about. This site is the place to visit when you're uncertain. Good luck.
I have all these symptoms along with the thyriod problem too ,whenever I mention it to the doctor I am sort of ignored in a polite way ,The reaction to this condition in my surgery is vague to say the least .I find it very frustrating .No I havn't been offered a card either 4 years on steroids so far . My Rheumy said don,t go beneath 5 mg My doctor has just advised me to get it down to 1mg .After prescribing me 40 mg per day in error . I pointed this out ,he still prescribed it. I have the prescription box to take to the rheumy I have enough for the next few months now ! . Sigh . I wish I knew why this illness seems to create a head in the sand reaction from some doctors . Its strange and worrying .It all seems to hinge on mainly blood tests in visits to Rheumatolgist but where do we go from here other than to keep checking this site for information from other sufferers. What a strange situation we are in . Thank goodness there are level headed people writing here who are informative and supportive .
Time for a move of GP I think if it is possible though I do appreciate the problems in the UK these days. Is there someone else in the practice? And do consider a complaint to the practice manager about the incorrect prescription - someone who didn't know any better or who believes everything their GP says could suffer. Next time it could be a drug that is really dangerous in a high dose.
If your rheumy said not to go below 5mg I'm sure he has a good reason - so tell him your difficulties with the GP. "Head in the sand"? - no, a lot of it is irrational fear of using pred and a disease you can't see or prove and which they are told goes away in 2 years. Except it doesn't most of the time...
Your last sentence stands out - I find that we need to be as conversant & as knowledgeable as possible about our PMR simply because our GP's are usually run off their feet alongside not being truly up with the play on the complexity of PMR.
Remember this was once considered an illness for old ladies but the wheels are slowly turning for the better research wise especially in the UK with what I read on this site.
In NZ where I live, my GP only has one other patient/client with PMR. My hypothyroid was not fully understood blood test wise which did come as a surprise - I sat beside her as she sought clarification from a senior at the Lab.
I sought a Medic-Alert bracelet, don't wait for the medical profession to come to you, go with a list of questions & tick them off as you ask. This is what I do every time - I don't trust myself to remember all my questions, this is what we pay them for.
Just as importantly its hugely beneficial psychologically speaking as I feel I at least have some control over my PMR rather than it having a control over me .
mel-21: That's something to discuss with your doctors, no-one here is qualified to answer that and without seeing you not even a doctor should approve it.
What you do need is a doctor who will investigate properly, not dismiss the results from another healthcare professional - really a very UNprofessional attitude.
My Grandmother had MS, so throughout all this, I have had this fear. Although she was a good role model, remaining cheerful and interested until she died. It would be good if you spoke to a councillor about these fears thereby creating a way of being if your fears are founded. Your GP maybe sympathetic to your desire for a sedative at this trying time. I can certainly empathise the wanting to feel calm and a bit above it all.mespecially
My grandmother had MS so throughout all this, I have had this fear. Although she was a good role model, remaining cheerful and interested until she died. It would be good if you spoke to a councillor about your fears thereby creating a way of being, if your fears turn out to be founded. Your GP maybe be sympathetic to your desire for a sedative at this trying time. I can certainly empathise with the desire to be calm and above it all sometimes. Steroids can cause awful anxiety too. Anxiety often stems from our feeling out of control in a situation. Medication will only mask this. I can recommend Mindfulness as a way of developing the calm you seek, within yourself. Google for a class near you. You are not alone. I doubt the pills will interact, check with a medic, but just short term. Sending kind thoughts Jane. X
The reason that I ask you guys here wether is it safe to to take the anti anxiety drug is beacuse none of the doctors could diagnose me yet. As I said just beacuse of my age and my normal lab tests my GP dismissed my MRI result and said your fine.
The neurologist also was not sure what to say beacuse my nerologycal signs were normal. But after looking at the MRI scan yesterday he called me and told me I need to reapet the MRI with contrast.
So here I am left in fear of not knowing what I have. So I thought to ask you here to see if anyone of you take any anti anxiety with the medications that you take for your condition. If yes it means that it's safe.
At least I could get a peace of mind a little. Beacuse i am not yet diagnosed for anything in afraied that my dr would give me meds that could be bad for those conditions.
It might be worth asking for a rheumatologist appointment. Giant Cell pain runs down the side of the face. Better to be told you do not have GCA then loosing your sight. Hope this helps.
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