Update

[Margiepargie]

so I’d like to say a massive thank you to everyone for their wonderful advice. This is a little update to what has happened today.

Well what a day I’ve had. I messaged my gp surgery on Wednesday hoping to hear something back. Nothing at all. So I called this morning to try to get to see a Dr and managed to get an appointment this afternoon.

The duty doctor was great, he said straight away that I needed to go to the eye emergency department in my local hospital and they would be expecting me. So I go straight there hoping I wouldn’t have to wait for too long. How wrong was 3 hours waiting.

I did get an eye scan and eye test and she said couldn’t see anything wrong. Oh and that I was too young to have GCA.

She sent me away saying I needed a blood test to check for inflammation but she couldn’t sort it I’d have to go back to my GP to get it. So off I went back to my surgery only to be told that there was no way I’d be able to get a blood test this side of Christmas so I said I wanted to see the duty doctor again that I’d seen earlier, luckily I only had to wait 10 min to see him. He was fuming at how incompetent they were at the hospital he took my blood there and then and said he was going to take the bloods to the hospital himself as he would pass it on his way home. So waiting to see the inflammation levels and he said I should up my pred while we are waiting just incase.

I’m hoping that there’s no more inflammation and I’ll be able to lower the Pred back down because I must say for a week before having my first symptoms was actually starting to feel pretty good.

but thanks again to everyone xx

[DorsetLady PMRGCAuk volunteer]

Well done that duty doctor… and not well done the others! Let’s hope it’s not GCA, but it must be checked properly….

[PMRpro Ambassador]

Silly woman - not you! Brownie points to the duty doc - and I'd recommend seeing him again!!!!

There is a report in a South Wales newspaper of a man of 37 who died of a stroke caused by undiagnosed GCA. No argument - the pathologist found it. Pathologists know EVERYTHING - but it is too late.

[PRL1957 in reply to PMRpro]

Hi, PMRpro,

That is an awfully sad case!

For anyone interested, here is a link to the newspaper article:

walesonline.co.uk/news/wale...

It seems the various doctors claim that the condition is 'almost completely unheard of in young adults'. But I suspect the trouble stems from medical studies that only recruit older patients, so they never consider younger people with GCA and/or PMR.

What I really cannot understand is 'a CT scan and blood tests taken at the University Hospital of Wales all came out normal'. Did the blood test really not show raised CRP or ESR?

[PMRpro Ambassador in reply to PRL1957]

Yes, I have the link somewhere but didn't look it up. CT scans aren't ideal for finding GCA - I suppose PET-CT is possibly the best but back in 2012 it probably wasn't an option. SnazzyD on here sat in the ED with her vision shutting down and stubbornly normal markers. Some people simply don't "mount the acute response" as they put it, but too many doctors don't think of that and, as you so rightly say, don't see what they aren't looking for. There is a proportion of GCA cases who first know they have it when they wake having lost vision, sometimes total, and it is called occult GCA, Others have had vague symptoms that their GP didn't recognise as even PMR, never mind GCA - ask DorsetLady about that.

[DorsetLady PMRGCAuk volunteer in reply to PRL1957]

GCA is rare in younger adults - fact [although that doesn’t mean never], so if it’s not suspected it’s probably not looked for nor even considered by clinicians.

As we know on here, GCA is not always picked up on scans, and not everyone has raised CRP/ESR levels, which are non-specific anyway.

As PMRpro has said, there are many [even those in the ‘correct’ age range] that fall through the net, as I can testify.

[Nextoneplease]

Well done you Margiepargie for your persistence! And well done that duty doctor 👏 His care is what we would all hope for (but all too often don’t get).

All the best, do let us know how you get on x

[random901]

What a lovely duty doctor! I await further updates.

[Angelsmummy]

Do the Drs,think that because it is Xmas that our diseases go on holiday too?Disgraceful,and bloody dangerous to say the least ( pardon my French!)Wish I could give all my aches and pains to some of these Drs to see if they would like it!I hope things settle for you Margiepargie.xx🎄🤶🎁😜

[PRL1957]

Hi, Margiepargie,

Amongst all your hospital and GP visits, has anyone advised you on what amount of prednisolone you should be taking?

According to your biogs. about 2 months ago you were on 9 mg/day and tapering at 1 mg/day every 3 weeks. So I reckon you would be on around 6 mg/day, now.

When I had my suspected brush with GCA (suggested by persistent headaches, raised temporal arteries and raised temperature), I was on 3 mg/day, but had tapered too quickly. The GP recommended I raised my dose to 30 mg/day - as a precaution.

The GP arranged for me to be seen by an opthalmic specialist on the same day, who also arranged for blood samples to be taken. The tests showed raised inflammation markers (CRP = 139 mg/L, ESR = 68 mm/hr), confirming that something 'unpleasant' was happening.

Fortunately, in my case, the ophthalmologist found no damage done to my eyes. But GCA is a dangerous condition that restricts blood flow in arteries supplying the eyes and brain. As PMRpro has pointed out, left untreated, GCA can cause a stroke and death.

[Margiepargie in reply to PRL1957]

Hi, I have seen a new rheumatologist at a different hospital and he said I was tapering too quickly. So I’m on 7mg at the moment . I was hoping to go down to 6mg second week in January.

I’ve been advised to go up to 20 mg while we wait for the results to come back. I’m just hoping that I hear something tomorrow but the doctor I saw won’t be there and has left it in the hands of the surgery, so I’m not going to hold my breath.

The head and eye pain has almost gone but I’ve still got a dull ache in my right temple. I’m just hoping that it’s nothing. ☺️

[PMRpro Ambassador in reply to Margiepargie]

Suppose it is too much to hope you will get to see him again? And honestly - postpone tapering in the depths of winter, it is so much harder, especially when you add in the excitement of Christmas! And at this level - a step down no more often than every 4 weeks is too much and longer is better for several reasons.

[PRL1957]

Perhaps I am overly scared of GCA. I admit the thought of potential blindness or a stroke scares the sh*t out of me, so I'd be on the 20 mg/day suggestion - or higher. I believe 40 mg/day is typical for GCA.

Yes, I know corticosteroids can come with side effects but, when faced with the possibility of GCA, I believe the risk associated with a higher dose was preferrable. And you may be able to come off the higher dose relatively quickly.

As for tapering, by the time I was down to 7 mg/day, I was decreasing by 1/2 mg/day every 3-4 weeks - if my PMR symptoms allowed. Pill cutters are available (e.g from Amazon). Otherwise, you can bob between higher and lower doses for alternate days.

[Margiepargie in reply to PRL1957]

Thanks for your advice. There is so much to learn about GCA. I’d never even heard of it before finding this forum. I’m so grateful for the knowledge of all the lovely people on here. X

[DorsetLady PMRGCAuk volunteer in reply to PRL1957]

The thought of GCA is scary. But it’s much more dangerous before diagnosis, that’s when most damage can be done [says she from experience]. Once you are on Pred and aware of GCA then you have much less chance of sight loss and/or stroke [not saying it never happens of course] - but at least you do know the signs to look for.

As someone who has lost sight in one eye, it can assure you there is plenty of things you can still do - am now on my third trip to NZ - and flying solo to boot on all three to boot.

A couple of post to prove it -this one penned up years ago -when first in remission -

healthunlocked.com/pmrgcauk...

And this 4 years ago - some info duplicated in both - so apologies -

healthunlocked.com/pmrgcauk...

[PRL1957 in reply to DorsetLady]

Hi, DorsetLady,

Thanks for your reply. Your comments and advice are most welcomed.

As you said, GCA is more dangerous if undiagnosed and untreated. In my case, I was aware of the possibility that my PMR could develop into its 'evil cousin'. So I got in touch with my GP, who raised my prednisolone dose (to 30 mg/day) and arranged for other specialists (opthalmic and rheumatology) to check me over very promptly.

Fortunately, in my case, there were no serious consequences, and I was able to taper off the higher prednisolone doses within about 4 months. I don't know, but the brief period on higher doses may have helped me, because I was subsequently able to taper off the prednisolone completely over about 15 months, without any signs of my PMR returning.

And it is good that you are still active and travelling etc.

Merry Christmas and a happy new year to you and anyone else reading this thread.