GCA

[Phed]

I’m curious do many people on this site just have GCA like me, a lot of people seem to have PMR as well, I feel very lucky not to have PMR but was wondering if it is something that might developed at a later date.

[DorsetLady PMRGCAuk volunteer]

Hi,

I had GCA only, as have a few others - sometimes people have both at diagnosis.

Others have PMR only, but some initially have PMR which for various reasons develop into GCA along the way.

“About 15–20% of people with PMR develop GCA, and 40–50% of people with GCA have symptoms of PMR [Ameer, 2014; Matteson, 2017; BMJ Best Practice, 2018].“

Not sure there’s any exact science to prove why some get one or both.

[Phed in reply to DorsetLady]

Thank you for your reply, How long have you had GCA and are you still on Steroids for it, I understand from my consultation it will never go away but it would be nice to get of steroids all together at some stage, as more people seem to suffer from PMR does that mean it isn’t as rare as GCA? I can only guess GCA must be rare as very few Doctors seem to know about it and always say don’t you mean arthritis (er no) it took 7 doctors in 3 weeks to finally come up with and answer to my problem.

[DorsetLady PMRGCAuk volunteer in reply to Phed]

I had GCA for about 6 years. It took 18 months to get a diagnosis - GP had no idea! But unfortunately by that time I’d lost the sight in one eye - Ophthalmologist in A&E knew exactly what it was.

I was on steroids for 4.5 years - and have been in remission for almost 4 years now.

We say remission because there is a possibility that it may surface again - but I think your doctor is a bit of a doom-monger saying it never goes away!

and yes - GCA is rarer than PMR.

So think yourself lucky it was diagnosed within 3 weeks - early days it very often gets confused with frozen shoulder or rotator cuff injury - as was mine.

[Phed in reply to DorsetLady]

Mine was diagnosed with a tooth infection and then another suggested a ear infection. Doctors really need to get on top of GCA considering how serious it is.

[DorsetLady PMRGCAuk volunteer in reply to Phed]

The charity is doing its best to highlight the issue, but it has limited resources.

I think newer doctor may touch on it during training - but it’s not seen as a serious as other life threatening diseases. Plus of course it’s seen as an older persons disease - not that that’s a reason - but!

[Phed in reply to DorsetLady]

I look on it as serious as I expect you must do as well nobody wants to lose their sight at any age.

[DorsetLady PMRGCAuk volunteer in reply to Phed]

Yes I do.

But like many had never heard of it before diagnosis.

I would hope that things have improved over the last 10 years - but at times I wonder.

[Yellowbluebell in reply to DorsetLady]

When we see so many reports about people losing sight on here you do wonder if things have improved. YBB

[Phoenix51 in reply to Phed]

Similar experience with me, not many have heard of it .. you can forgive friends /family of course but not medics .. I had to go to A and E and the triage nurse thought I had arthritis, even when I explained about the Arteritis she still put arthritis on the queue form, she says she would have to google it. The A and E dr I saw next said I was too young to have GCA (51) and that it couldn’t be GCA anyway as the pain was in the back of my head and not my temples. Considering it’s classed as a medical emergency there does seem to be a lack of knowledge/understanding of the condition.

[Phed in reply to Phoenix51]

Why do they have to put ages on everything? I had my Gall Bladder removed are 27 can’t be possible they said because I wasn’t fat, fair and over 40 when will they realise age is just a number.

[PMRpro Ambassador in reply to Phoenix51]

And the occipital region is a favoured site for GCA!

[SnazzyD in reply to Phoenix51]

Back of head/top of neck pain was the first head pain I had with GCA buildup, before it spread to the temples.

[Phed in reply to SnazzyD]

Mine was left hand side jaw pain, hurt to brush hair,when it finally got into full flight I couldn’t even put my head on a pillow and often had severe stabbing pains in the right hand side of my temple, couldn’t stand going over a mini bump in the road as it made my head hurt so much.

[EdithWales]

I started out with GCA and developed PMR several years later, fortunately the latter is not too bad, just aching hips and some tiredness. Interesting the figures though, I wasn’t told that

Take care

🥂

[Phed]

That is terrible you waited so long for a diagnosis, I feel really lucky that mine was discovered so quickly, funnily enough I had an eye test after I was diagnosed with GCA and once again the Ophthalmologist was so knowledgable about the condition he told me what all my symptoms were and even the side it started without asking me any questions it turned out he had worked bin an A & E department.

[jinasc]

Opthamologists are trained to spot GCA and they frequently send people straight to A&E, even telephoning ahead to tell who, what and why is on there way.

I had GCA only for 5 years and remission and last pred on 31st December 2011. Ups and downs on the journey. No PMR even then or subsequently (fingers crossed)

[DogAgilityObsessed]

I feel lucky to have only PMR and not GCA.

I have annual optician appointments (short sightedness and family glaucoma history) and am interested to know if there is anything the ophthalmologist could spot like an early warning of GCA.

[Phed in reply to DogAgilityObsessed]

I don’t know if a ophthalmologist could spot anything for GCA as when I went to have my eyes tested I had already been diagnosed with the problem by a doctor.

[DorsetLady PMRGCAuk volunteer in reply to Phed]

Ophthalmologist diagnosed mine in hospital - but my optometrist suggested I go there after I described issues over the phone.

I had my annual eye check with optometrist last week and they can tell if there's a problem with blood not getting through ophthalmic artery to optic nerve - - the optic disc show as pale, whereas it should be dark (and full of blood)

[jinasc in reply to DogAgilityObsessed]

I suggest you ask your optician, I never asked Bridget (trained at Belfast Uni) at the time. Much later when I got involved with finding out re both, Bridget had left to have a baby.

Years later I had always wondered why she insisted on changing my glasses to re-actolite rapide. A Lady who had PMR and was a member of a support group asked if her son who was an opthamologst could come and give talk. He came, and the explanation was simple,

Pred+Sunshine is a no, no. Together the cause cataracts or if you already have the beginnings then is encourages them to grow.

So if you do wear glasses or need them then make sure they are re-actolite rapide.

Don't wear them, then sunglasses even when it is not to bright.

[Phed in reply to jinasc]

That’s interesting to know that Pred + Sunshine is a no no, I did mention to my consultant last time that I found since on Pred that the sunshine seems to affect my eyes more but he never commented on it.

[jinasc in reply to Phed]

Bridget even prescribed night driving glasses.

[DogAgilityObsessed in reply to jinasc]

Interesting and useful. I have good sunglasses for when I wear contact lenses. But I usually only wear them when doing agility (or when it’s raining). So been wearing normal glasses for the past few months.

[DorsetLady PMRGCAuk volunteer in reply to DogAgilityObsessed]

Switch to sunglasses or reactive (different brands have different names) lenses - and wear in winter - might look a bit filmstar-ish and “posey” - but even very weak sun can damage.