Few questions

Hi all I just been reading comments on Facebook pmr page about gca symptoms. There was a few I wondered if they were right. So going to ask. That pain both side of head just above/behind where yr glasses would go but worse on 1 side? Head pain comes and go and is on and off over several days or wks and it never comes on suddenly and if it goes with just normal painkillers it not gca pain, and u only get gca on 5mg or lower. There was a lot more as well

[piglette]

I looked at the Facebook site recently, a lot of the advice is frightening, particularly the suggestions to stop taking pred, one said take 30,000 iu of vitamin D and vitamin C a day instead. There seems to be a lot of anti vax people on it too.

[Kendrew]

Hi Karenwelsh. I have PMR and not GCA so others with more knowledge will be along to give you a more comprehensive answer shortly. Just wanted to relate my experience. It's a bit of a tricky one this because there are obviously a set of symptoms that are generally linked as being indicative of GCA.....(eg. head pain, particularly around temples (but not always), scalp tenderness, neck stiffness, visual disturbances, etc)

It's true to say that the pain can be on one or both sides, it can come and go and isn't normally eased with pain killers but I've not heard of it only occurring under 5mg and know of people on a much higher dose who have still developed it.

Some people will tell you they've not necessarily had all these 'tell-tale' signs but on further investigation, still been diagnosed with GCA.

I personally suffer from a lot of head pain that manifests with neck and shoulder stiffness, pain up back of scalp that leads to pain above eyes and sometimes around temple area too. I've had lots of tests that have repeatedly ruled out GCA but have suggested instead that I have issues with muscles, ligaments & tendons in my neck and shoulders. I even saw a neurologist who also concurred with that diagnosis. I was convinced my symptoms were GCA which is why I immediately (and repeatedly) had it checked out.

Everyone of is different and will have their own unique experience of this condition. Symptoms will vary from individual to individual and although there is a given set of symptoms that generally lead to an eventual diagnosis of GCA, these are not set in stone. It's therefore important that if you have any worrying or new symptoms, that you get them checked out.

My motto:- If in doubt, check it out!

[GOOD_GRIEF in reply to Kendrew]

I agree. Anytime your body is doing something different and you don't like it or understand it, see a doctor. Sooner rather than later, if possible. My experience in the US is that if your doctor know you and doesn't think you're some kind of nut, they can refer you and get you seen pretty fast.

[PMRpro Ambassador]

Some of that is tripe - the "only under 5mg" bit certainly is - if that were true then people wouldn't sometimes need 60mg and more to relieve the symptoms! And people with PMR at well above 5mg may progress to develop GCA or LVV (large vessel vasculitis).

Where the pain is varies - it may be bilateral, it may sometimes be unilateral though the position is about right. However, GCA headache can also be occipital, i.e at the back of the head. It is unlikely that real GCA pain will respond to paracetamol - but doesn't rule it out altogether. The symptoms CAN come on suddenly - it depends on the position of the problem but headache is the presenting symptom (what takes the person to the doctor) in under half of patients so headache and how it develops isn't a particularly reliable indicator.

[Pixix]

After your post yesterday and my response did you check out fibromyalgia, please? Do your symptoms fit? Just wondered as you said doctors think you have it. I get pains in my head and neck with pmr but it’s not gca, the pred gives me headaches above 5mg, the constant pain with fm also causes headaches, too! If you are worried that you have GCA I believe the usual advice is to go straight to A&E. But optician is a good place to go regularly with headaches issues too I think. But not if it’s urgent. Good luck I’m sure others with GCA will be along to answer your specific questions soon!

[Hidden in reply to Pixix]

Yes I dod have a read probably a 3-4 I get but usually come and go

[Pixix in reply to Hidden]

Um, best talk to your GP again I think the lowest number you can be diagnosed with is 10? You probably read that in the info on Google. Basically my feeling from my experience only is that if you try pred and you still get pain it’s not Polymyalgia that’s how it is for me. The pred takes away all the pain that I get from polymyalgia when I take the right dose of pred that I need. If you are needing painkillers other than paracetamol for a headache, then something else is going not, not necessarily fibromyalgia or polymyalgia!! Could be a host of other things. Good luck with getting a definite diagnosis through your GP and consultants! S x

[Hidden]

After I read them yesterday, I was starting to question what I thought I was learning about pmr, it makes it so confusing and misleading for anyone new to this, I'm still finding things confusing and not sure after 7 months

[PMRpro Ambassador in reply to Hidden]

In what way? There are a lot of similarities between fibro and PMR - that is what seems to confuse doctors who have rather a rigid view of PMR

[Coffeebeans]

Just to add Karen, I was a member of a few Facebook PMR groups and was frankly quite shocked at the poor advice being given out, some extremely dangerous.

I would certainly recommend leaving those groups and relying more on the excellent information and resources here, or the PMR charity helpline which you can use if you are a member.

[DorsetLady PMRGCAuk volunteer in reply to Coffeebeans]

There is one that is aligned to the charity, and is monitored by them, but as you say some of the others are way off the mark with some things…best stay clear of those.

[Kendrew]

Coffeebeans advice is good advice regarding where you take advice from. This forum offers accurate, informative and trustworthy advice based on personal experiences, reliable knowledge of this condition and regular notifications about new research findings. This is the only place I trust whole heartedly for reliable answers and advice.

[Fran_Benson Partner]

Hi everyone, there is a lot of information out on the internet about PMR and GCA, particularly on social media sites such as Facebook. We do have a Facebook page facebook.com/pmrgcauk and it is set up to only allow us to post on it - although people can reply to posts, but these are generally checked. However all the other sites are nothing to do with us and there may not be any controls or checks on what people write so please do check any information with a reliable source or stick to our website or forum (this one here on HealthUnlocked).

Our magazine also contains a lot of information about the conditions and is available to our charity members - if you haven't joined, please consider doing so: pmrgca.org.uk/how-to-help/b... - this also gives you access to our member only webinars - the next ones are scheduled for September as part of our Members' Day.

Fran