GCA diagnostic dilemma

[Predderman2020]

Thank you everyone who has helped so far.

Last night I had a message from Rheumy saying I should go to the hospital for an emergency biopsy, with the headache and unusual severe temporal pain being the driver. He said that U/S was so ‘operator sensitive’ as to be unreliable in this ‘locality’.

The (island of Gozo) hospital is fine, but I didn’t think I would get prompt treatment on a Saturday night, and going by the two paragraphs from an academic paper, quoted below, could be a nail in the coffin.

I am mulling whether to turn up at the hospital today (Sunday), just with his email, and ask for a biopsy, or wait till my Dr and/or Rheumatologist sends a note/appointment for here or elsewhere, or other answer.

In any case, and I am not sure if you agree, I increased my dose last night to 60 mgs because ‘visual loss occurs prior to glucocorticoid treatment or shortly after treatment initiation’ ? (No unusual reaction observed to the increase from 4mgs).

‘Visual loss or stroke may occur in GCA, attributed to vascular occlusion; most GCA-associated visual loss occurs prior to glucocorticoid treatment or shortly after treatment initiation, underlining the importance of immediate treatment if the disease is strongly suspected’.

‘ If rapid-access vascular ultrasound is not available, patients treated for suspected GCA should all have a temporal artery biopsy. None of these tests should delay the prescribing of high-dose glucocorticoid therapy for patients with strongly suspected GCA’.

This does not invalidate the usefulness of U/S. On the paper below, there is a diagnostic path where U/S in integral in the pathway to diagnosis and treatment.

I am hoping for a negative and I can return to my lowest level of dose to suppress symptoms, as we all agree is our goal.

As ever I am very grateful both for your depth of knowledge and kindness.

Source: academic.oup.com/rheumatolo...

[DorsetLady PMRGCAuk volunteer]

As you’ve decided to take 60mg, then presumably you intend to stay at that dose until biopsy is done [and its not just a one-off dose]… so the sooner you get that done the better…..

You should be aware that you may get a false negative result from the biopsy. That doesn’t always mean you don’t have GCA, just that the sample taken didn’t show any trace, be that because the affected cells weren’t in the sample [they aren’t uniform throughout artery nor necessarily in the temporal artery although may be in others] or even if they were, the Pred has already reduced them…. hence the need for biopsy to be carried out quickly..

Suggest you attend hospital today and see if they are prepared/able to do biopsy today… and please let us know.

[Predderman2020 in reply to DorsetLady]

In Emergency !!! Thanks

[Predderman2020 in reply to DorsetLady]

He is adamant he managed to ferret out the real McCoy- 1cm+👍

[DorsetLady PMRGCAuk volunteer in reply to Predderman2020]

Have replied further down …,

[Telian in reply to DorsetLady]

I had a negative TAB result but positive Ultra Sound.

[SnazzyD]

In the same situation I would have eyed up that bottle of Pred for sure. I have read lots of pieces too where it says commencement of Pred should not be delayed whilst waiting for a biopsy. I have also read quite a range of opinion as to how long is too long for the biopsy to be reliable. The person doing it can make a difference and it is essential that the sample is a minimum of a cm long. I asked to see mine, but it should be borne in mind that the preserving medium can cause contraction of the tissue.

As DL says, if the affected tissue doesn’t happen to be in the 1cm or so length of artery sample they take it will give a false negative. My test (8 days later) was negative but I was still treated as GCA on the strength of symptoms and a good response to Pred. Together, the evidence was considered compelling enough.

Good luck!

[Predderman2020 in reply to SnazzyD]

In Emergency. Thanks!

[Predderman2020 in reply to SnazzyD]

1 cm it is

[PMRpro Ambassador]

Not sure how the system works in Malta - there will always be a duty surgeon available but in the UK the likelihood of getting an emergency biopsy is about zero! I would have gone and asked though!!

The more they can get the better obviously but getting the artery rather than any other bit of tissue is crucial - and that mistake has been made!!!

[Predderman2020 in reply to PMRpro]

Understood. Unbelievably, they are talking about transferring me by helicopter to Malta (main island). We’ll see. Hats off to the Maltese for effort.

[PMRpro Ambassador in reply to Predderman2020]

Living where I do, I don't find that so unbelievable! And we can drive in an hour or so -less than you can to get to Valletta. I'm impressed they are taking it seriously. Enjoy the flight!

[Predderman2020 in reply to PMRpro]

In the end they happened to have a Maltese main island surgeon there. Trained at NHS Liverpool. Plus the Rheumatologist I was dealing with was there (and behaving himself). More bloods, CT brain scan, and Biopsy. I know he got the artery because he gave me a running commentary on digging around for it and the particular branch and the length he wanted to be extracted … encouraged by me saying ‘make sure you get a centimetre’. All done by 4:30 pm.

[Predderman2020 in reply to Predderman2020]

Result due in 2-3 weeks. I have to stay on 40mgs per day till then. Assuming I am negative, in biopsy and clinical terms, would you be able to guess at how quickly I might get back down to 4-5 mgs again, after 3 weeks at 40mgs. Thank you. Unfortunately I will have to postpone my second cataract because of pred/infection/lower immunity, and eye pressure increased due to high pred dose.

[DorsetLady PMRGCAuk volunteer in reply to Predderman2020]

Wait until you get result and then discuss tapering with Rheumy.

No point trying to second guess until you know -as said many times it may not be a definitive answer… so symptoms are key…and must be taken seriously -and after all they were enough to warrant a biopsy…

[PMRpro Ambassador in reply to Predderman2020]

Excellent - I really am impressed! If it isn't GCA then you can drop very quickly to 10mg and even 5mg after only 3 weeks - but remember, a negative biopsy doesn't mean NOT GCA, it means they didn't see what they look for and that isn't the same thing at all. So a lot depends on what they found in the other stuff and what they felt about the symptoms. And to be honest - there must have been something there that prompted them to do the biopsy. They weren't just bored on a Sunday morning!!

[Predderman2020 in reply to PMRpro]

Understood. And thank you - it wasn't my idea of a diverting Sunday, but they seem to be happy enough to do it, thank God! 🤗 My head pain has now gone completely on the monster steroid dose. I can't tell specifically about the temple because there is a surgical scar etc in the way.

[PMRpro Ambassador in reply to Predderman2020]

40mg isn't so monster - ask DL - but that is also a significant clue that it relieved the symptoms completely. Pred is used in migraine but I don't think it is that effective,

[Predderman2020 in reply to PMRpro]

Should’ve said I took 60 mgs the night before I went to hospital. Then Rheumy said 40 thereafter.

[PMRpro Ambassador in reply to Predderman2020]

Oh right - probably not a bad idea.

[DorsetLady PMRGCAuk volunteer in reply to Predderman2020]

As PMRpro says, not so monster [try 80mg] … but probably enough to give the answer…

[Predderman2020 in reply to DorsetLady]

80 mgs. As a one off to see? Might just try. I must admit I am finding 60 quite spacey as it is!

[DorsetLady PMRGCAuk volunteer in reply to Predderman2020]

No, not a one-off - had already lost sight in right eye - so on it for 2 weeks to help save the other… it did!

Then on 60mg for another 8 weeks… before tapering…

[Lenore58 in reply to Predderman2020]

why will it take 2 to 3 weeks to get the result?! I am in the US… So maybe that makes a difference… But my biopsy was on a Wednesday and I had the results on Friday! In any case, you did the right thing to take this so seriously as did the medical team.

[Predderman2020 in reply to Lenore58]

It does seem very long. I have had to postpone my second cataract op' because of the high steroid dose. BUT ... I do have a number which I can call to see if I get the result earlier. Thank you.

[Lenore58 in reply to Predderman2020]

yes, good, I would definitely try to get them to expedite your result!

[Predderman2020 in reply to Lenore58]

thanks! I am on 40 mgs in any case - their instruction, till the somewhat fuller picture emerges.

[Predderman2020 in reply to Lenore58]

I am pushing them now you say that. Thanks.

[PMRpro Ambassador in reply to Predderman2020]

The systems are very different - patience!

[Predderman2020 in reply to PMRpro]

I had the ultrasound in the main hospital in Malta with a Consultant imaging Dr who trained in Munich, prob about 40. I made myself unpopular by testing him (thanks to the excellent articles sent to me on this site). But he obviously knew what he was about and spent a long time patiently with a very specialised tool and reported 'no wall oedema, no relevant wall thickening, no halo sign on colour Doppler, no stenoses or aneurysm formation'. He checked both sides. I am waiting for the biopsy report which I will chase. Reasonably reassured so far. Thanks everyone.

[123-go in reply to Predderman2020]

Looks as though they’re considering all options: that’s what I call good service! Best wishes.

[Sophiestree in reply to 123-go]

Love Malta. Spent every summer as a teenager in St. Paul's Bay for 6 weeks each time ..... ahh the memories.

[123-go in reply to Sophiestree]

How lovely! I spent just a week in Bugibba some years ago. My memories include the Maltese who were so polite and friendly, the fish cooked to perfection and a guided trip around Valletta where we were encouraged to inspect the knockers.😆

[PMRpro Ambassador in reply to 123-go]

And the BREAD! Best bread in Europe and I have tried a fair bit!

[Predderman2020 in reply to 123-go]

Was that after the EU led the restoration of Valletta. Amazing now. Maltese still fab. Especially in outlying areas. They are very proud of their doors. I bought a dilapidated pair but still not restored them.

[123-go in reply to Predderman2020]

No, around the late 80’s. The variety of doors was huge! Must make the postman’s job very interesting 🙂.

[PMRpro Ambassador in reply to Predderman2020]

I love the doors and the window balconies - some old houses here have something similar - I think they should be mandatory in new builds too!

[Predderman2020 in reply to PMRpro]

I agree. Too many ordinary buildings without elaborations, and many left unfinished!

[Sophiestree in reply to 123-go]

Yes! Bugibba..I remember being in cars going downhill where they used to turn the engine off and restart it at the bottom of the hill... used to terrify me.

[123-go in reply to Sophiestree]

Would have scared me, too!

[PMRpro Ambassador in reply to Sophiestree]

Hope they don't these days - most modern cars lose their steering!!!!

[PMRpro Ambassador in reply to Sophiestree]

So do I - we were intending spending part of the winters there but OH got too frail and then came Covid. Qwara was our haunt.

[Predderman2020 in reply to PMRpro]

I haven’t been there but I was just checking it. Lovely.

[Sophiestree in reply to PMRpro]

Went to a wedding in QwaraI don't know if I want to go back in case I'm disappointed.

[Predderman2020 in reply to Sophiestree]

Yes. Still lovely there! More built up though, every year.

[Lollybygolly]

I had all the symptoms of GCA and my Locum gave me 60mgs. The biopsy said no GCA BUT THE SYMPTOMS REMAINED. My GP wanted to reduce to 10mgs but I fought him in this and reduced to 30 nhs. All thanks to the ladies on this group who encouraged me. My sight was Misty in my left eye but it cleared thank God. You’re right: the tests aren’t conclusive, so treat the symptoms because you can avoid blindness as many have been unlucky enough to lose their sigh with GCA. Good luck!

[Predderman2020 in reply to Lollybygolly]

Thank you and well done for sticking up for yourself when you had just enough time for it to make all the difference. Thanks again.

[brenda1207]

My advice is to act immediately! I was watching TV one night and suddenly lost vision in my right eye. I didn't realize all my vision was gone because I could still see out of my left eye. I had just been to the eye doctor that week and had a complete exam and all was well. I thought possibly it was just dry eyes and would get eye drops in the morning. I got eye drops and put them in all weekend but by Sunday I realize something was very wrong. I called my eye doctor and tell them I needed immediate appointment on Monday. They sent me directly to the hospital and started me on iv doses prednisone, but it was too late. The vision was completely gone in my right eye. Initially thought I had had a stroke in my eye but ultimately diagnosed it as GCA. That was in 2018 and my vision has never improved in that eye. Sadly, they may have been able to save my vision if I had acted immediately.Good luck?

[DorsetLady PMRGCAuk volunteer in reply to brenda1207]

Sadly, they may have been able to save my vision if I had acted immediately.

Very doubtful... unless the vision loss had only been fleeting and then returned within moments it may have been a possibility... but once it's gone for any longer than that, it's usually gone for good...

In similar situation myself...no change since 2012...

[PMRpro Ambassador in reply to brenda1207]

You would have had to be in the ED within a few minutes of the change in vision. You were really lucky you retained the sight in the other eye - once the vision in one eye is gone, it is a 50:50 chance of the other going within 2 weeks.

[HeronNS in reply to brenda1207]

I am glad you saved the second eye. I guess over time you've been able to adapt to the loss of sight in the other? You are not so wrong to have thought at first it was a stroke. My ophthalmologist told me that GCA needed to be treated as seriously as a heart attack or stroke. And one is at an increased risk of stroke with GCA.

[Predderman2020]

Thanks for your very valuable advice. I am so sorry for that so distressing outcome. I did indeed act with 60 mgs straight away things started to spiral. But by mouth. I am now on 40 mgs, and off for an ultrasound this pm as well as the biopsy yesterday (with thanks for that u/s advice to several persons on the site). What a disease this GCA. A different hazard wherever you look.

[LuckyMaddi]

This article may be of use to you. They mention diagnosis based on 3 of 5 criteria. Box 1 (I believe). ncbi.nlm.nih.gov/pmc/articl...

[Predderman2020]

read it. V v good. Thanks very much. Loads of clear info.

[ChinaWuntoo]

Love reading about Malta. I was stationed there in 1959-60 as a National Serviceman and have holidayed a dozen times in recent years. What a delight!

I wanted to go one more time after diagnosis of PMR and knowing about GCA but was too nervous as I didn't know whether there were good rheumies and facilities there. I needn't have worried it seems. But I'm too old now and a partner to care for.

Hope your experience continues good.

[Predderman2020 in reply to ChinaWuntoo]

Remarkably good. What service were you in. Thanks for your good wishes. And same to you!

[ChinaWuntoo]

Attached to Royal Fusiliers - not the most loved by Maltese people! Lived in that lovely building (in St Patricks) which is now a school.