On the NHS web site is says that half of all people with GCA will develop PMR. I have read on other sites that people with PMR should be aware that they can develop GCA.
May I ask those of you who have/have had PMR/GCA which came first.
PMR/GCA (1)
GCA/PMR (2)
So far, I’ve got just GCA but would this query be affected by the fact that many more people get PMR than GCA, and a lower proportion of the PMR people get GCA than GCA people that go on to have PMR. Or am I barking up the wrong tree?
My GCA was "diagnosed" first (11/2017), but upon further discussion and analysis it was determined that I had probably had PMR for 2+ years prior to that diagnoses. I kept going to GP every few months with "weird" symptoms, i.e. aches, pains, flu like symptoms every couple months, pain in buttocks and thighs, extreme fatigue, general weakness and malaise... He (the GP) said that as a "woman of a certain age," I should expect to have these annoying ailments! ...and it was probably a "virus." : [] Grrrrrrrrrr
Yeah - snap...
Snap indeed!
Just in case i haven't said it here before MY version of "SNAP" is usually related to a a:
Sensitive
New
Age
Patriarch
- no offence meant to you decent chappies here !!
Hmmm, I had not heard that.... The Urban Dictionary defines it as:
1. an expression displaying the slickness of a comment you just made
2. a word to use when you get shocked or surprised about a comment.
...but who knows for sure. All our words mean something different nowadays!
Thanks mamici! It seems as though you had PMR first but went un-diagnosed for far too long.
Yup, thanks to my enlightened GP!
Yep, me too, 4 years for me.
Is he still alive .......................??
Hahahahaha! Yes, but I do not take appointments with him any more...
Maybe you should. Just one. He probably thinks he's won and you've backed off. You need to take back control and frighten him to death. Oh the power of surprise!!!
Hmmmmm? You know, I think you're right! I have thought about writing him a letter, as I am much better at writing than impromptu conversation.... but I should go in and tell him to his face what a twit he was and how he totally missed PMR and how now I have both PMR & GCA!
Someone said that recently - it is a figure I have never heard before and it certainly doesn't fit with my experiences over the last nearly 10 years. If 50% of PMR patients went on to develop GCA there would be far far more GCA patients here than there are wouldn't there?
The figure I was told previously, from experts, is that about 1 in 6 of PMR patients develop GCA - part of that number is the people for whom PMR was a presenting symptom of their GCA/LVV.
It isn't I am saying the NHS stuff is not from experts - but some is way off the reality. And lets face it - a lot of doctors and rheumies are way off reality as many of us know from experience.
It makes perfect sense what you say, which why I was asking which came first.
Your last paragraph speaks volumes!
I also know of a few people who originally were dx'd with GCA with no sign of PMR at all (it can be purely cranial arteries that are affected) but then developed PMR symptoms as they reduced below about 15mg. I think a majority of GCA people I know have never complained of PMR problems.
I have had GCA for 3 1/2 years and, touching wood, do not have any pmr symptoms.. only genuinely creaky old age stuff...I hope!
That is what happened to me. Because of the long waiting time for rheumy appt she diagnosed PMR as well as GCA about 2 momths after the initial GCA diagnosis by GP and eye emergency clinic although I wasn't aware of it. As I reduced the pred In 2.5 mg steps from 40mg the pmr kicked in. At about 15 I have stalled on taper as both GCA and pmr reappear. I think that the GCA dose deals with the PMR initially, and that as I taper the PMR is not controlled. The rheumies still query the GCA diagnosis on occasion, probably because they didn't see me when I presented with scalp tenderness and transient vision loss and no stiffness at all!
That's quite right - but it sounds as if you are thinking of them as separate illnesses. They aren't, just at opposite ends of a spectrum. PMR only needs about 15-20mg max to reduce the inflammation. GCA tends to need a bit more initially - but the very high doses are not so much because it needs more to manage it day to day but because they want to reduce the inflammation very quickly as it can be a risk to sight.
So, you could have PMR which is not diagnosed and then the ugly head of GCA appears. You take high dose steroids and all the symptoms clam down until you taper to a certain point and the PMR is present again.
In that case the medics would assume that you had GCA and later developed PMR.
Hi,
according to charity's site (but I think taken from Arthritis uk web)-
About 5% of PMR patients on Pred go on to develop GCA, that figure increase to 7% if PMR not treated , or not high enough dose of Pred given. Estimated 4 out of 10,000 get PMR.
UP TO 50% of GCA patients also develop PMR. Estimated 22 in 100,00 develop GCA. That figure presumably includes those that only have GCA and those that have both.
Not sure how up to date though.
Me: GCA only
Thank you DorsetLady, it's beginning to make a bit of sense now.
PMR first GCA two months later.
I was diagnosed with both in May. But, I must add that I had PMR symptoms for almost 4 years. I kept going to the doctor and he would do xrays and such, but no firm diagnosis. It wasn't until the headaches, night time sweats, weight loss, jaw pain and then blurry vision, the doctor said oh, we have a problem.
Which very likely wouldn't have arisen if you had been on pred earlier. Untreated PMR can progress to GCA...
Mine started almost simultaneously. At the end of March last year I started noticing strange head symptoms when I went to bed, which afterwards became much more general until they were there all the time. It was Friday 7th April when I woke up feeling stiff and in pain for the first time - I can date this precisely because I was going to visit my son and his family in Birmingham for the weekend. Over that weekend the symptoms got worse and in the following week they really kicked in.
PMR first and then GCA about 2 months later - I think I may have had 'both' originally though as some heady symptoms early - but also possible I had the PMR for some time a lot earlier as well - like Melissa I had many nebulous undiagnosed things for months & months beforehand and all medicos said I was 'fine' ... after all 'everybody' gets 'tired' ....
Hi I was diagnosed 2 1/2 years ago with PMR which started in my buttocks and then weakness and general aches elsewhere. 4 months later had jaw pain and headaches and was diagnosed with GCA had no previous symptoms of PMR which could be attributed to that but did have numbness in my feet which they said was nothing to do with PMR now 2 yrs later am under a neurologist as hot, tingling, burning all the time in them but they have not found an answer.. Sorry went off your original question.
For me it was PMR first, followed much later by GCA. I was fortunate in that the GP who made my first diagnosis warned about GCA and its symptoms.
PMR first and then cranial GCA a year later, although disputed by GP because the temporal arteries not affected. Was confirmed by private visit to Dr Hughes, Consultant Rheumatologist.
PMR first then 6 years later GCA (how unfair!). GCA presented with more generalized symptoms: hoarseness, horrible fatigue, high high markers. I have a great rheumie who was pretty sure what it was even tho I didn’t want to hear it!
GCA first then PMR
PMR then GCA - but had symptoms for GCA ie jaw stiffness at same time PMR diagnosed. Started with 30mg Pred in early November 2017 the started to taper to 10mg - severe headache developed in January 2018. Delay in diagnosis - hospital consultant did not recognise symptoms. Now though down again to 10mg and hopefully I will be able to continue with the reduction plan albeit slowly.
Yes that is what happened - indeed it was recommended that I reduce the Pred as blood markers were ok. Gave me cocodomal for the headache pain! Returned to hospital a week later and in tears with the pain insisted that it was GCA. After 6 hours getting CT scan I was eventually referred to rheumatologist for ultra scan and started on 60mg Pred. All that is forgiven as pain relief was instant and I seem to be on long road to recovery??!!
But if YOU hadn't had the courage to return rather than assume the doctor must be right????
I was in so much pain and having read a lot on this forum - that gave me the courage. It is difficult trying to explain to a ‘consultant’ who seems not to understand the condition ie GCA. From what I read here this seems to be common - too common - for those with this ‘illness’. Anyway on a brighter note it was my birthday yesterday and I am now on holiday again in our campervan in France and managing to walk daily - 7 miles. I do keep trying to live normally - in spite of the fat face and all other side effects!
Oh excellent - I NEED a holiday in France! Just waiting for Germany to return home and OH to get over his chest infection and we will wander down to Lake Garda as usual. I can't see why we can't go anyway chest infection or not - he's only got to drive for a couple of hours. I would even accept a night somewhere on the way! I think I can manage to get the clothes to the camper the other side of the road...
GCA for me then PMR after 😱
Thank you for your replies, I think that we can draw our own conclusions from your answers.
Too many patients are missed in the diagnoses of PMR which, when left untreated could well develop into GCA.
I don't think that enough research has gone into the actual diagnoses of these diseases which in some cases is why they are referred as "Rare"!
I have a feeling that once you get to a certain age, aches and pains are to be expected and serious diseases are missed or, as I've said before "dismissed"!
GCA is rare - PMR isn't in the specific population, it is said to be the most common cause of rheumatic symptoms in over 65s. The younger you are the less common it is - and it is also said that by the time you get to about 80 you probably have a 50/50 chance of having had PMR at some point.
Thanks PMRpro, if PMR isn't rare then why do they miss it so many times? I suppose there are other diseases very similar.
They tend to be better about catching it in older patients, many think you have to be over 70 to develop it - because the medical literature says "the average age of diagnosis is 73". But they don't understand that average means there will be a lot of people who are much older - and equally, a lot of people who are younger to create that average.
They also expect to find raised blood markers telling them there is inflammation going on - so 1 in 5 of us are missed for that. That is also more common amongst the younger victims. So if they DO accept the symptoms as meaning there is really something wrong - it is labelled as fibromyalgia (the trigger points often overlap), "your age" (pre or perimenopause, which can also lead to sweats and aches), there is a degree of depressive mood with PMR and so the depression label is attractive.
The rheumies I saw in the UK wanted it to be OA (the first one) or an inflammatory arthritis (the second). One GP at least in the practice recognised it - but I hadn't seen her originally as she only worked part-time and had been off on maty leave anyway.
There isn't a definitive marker or set of markers to make the PMR diagnosis more likely. Nor for GCA which can resemble TMJ, migraines etc. A lot of doctors think that GCA equals headaches, jaw pain, other specific symptoms - but in fact any one symptom only appears in less than half of patients. I have heard a doctor insist that "it's the wrong sort of headache" because it was at the back of the head - they think it is temporal headache only. In fact GCA favours the occipital region at the back of the head.
So it is probably a case of a little knowledge being a dangerous thing - they maybe THINK they know about it but don't. Are too proud to use Dr Google - or, these days, don't have time. And resent the patient who arrives with some solid basis for they question of "Could it be..."
Difficult Diagnosis PMR/GCA
GCA/PMR One Year on (?)
Questions on PMR & GCA
Appreciating Health Unlocked PMR/GCA
Bicycle Riding with PMR/GCA
