Extra Cranial GCA

[SheffieldJane]

I thought others with this diagnosis might find this paper as interesting as I did. There doesn’t seem to be much information about it. This is GCA without the headache, jaw claudication, issues with the eyes.

ncbi.nlm.nih.gov/pmc/articl...

[DorsetLady PMRGCAuk volunteer]

Thanks…have seen it, but sure many haven’t.

[SheffieldJane in reply to DorsetLady]

I wish I’d been with you when you read it. I found it quite a dense read. There seems to be an argument for treating it as a separate disease. I was lucky to be diagnosed, particularly as it has affected my Aorta now.

[DorsetLady PMRGCAuk volunteer in reply to SheffieldJane]

Yes it is quite heavy for non- medics like me. Although it was printed in 2016 the studies started in the 1990s -so perhaps it’s being recognised, diagnosed and treated earlier nowadays. Certainly hope so.

[PMRpro Ambassador in reply to DorsetLady]

It wasn't a study running from 1995 - it was a retrospecitive study on a cohort of patients that had been compiled much earlier to follow aortic complications over time. Sort of library research using the long term patient notes.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Okay, thanks

[Bling123 in reply to SheffieldJane]

Hi , how did they find out that it had affected your Aorta . I have PMR but I'm sure I have GCA but because all my problems started with a ginormous headache and jaw problems but I'm just been treated si far for for PMR and I'm obviously worried about the heart thanks for any reply .

[SheffieldJane in reply to Bling123]

I had an Aortic scan during my PMR before the Pandemic and it was normal. I have had a heart MRI and that didn’t show anything either. I have had PMR for over 6 years. I was diagnosed with GCA over 2 years ago I think or more ( I feel we lost 2 years during the pandemic). I was experiencing breathlessness and was referred to Cardiology who diagnosed dilation of the ascending Aortic artery that requires annual monitoring, so it must be slight. I have yet to discuss this with a doctor. I see my Rheumatologist in June, she has received a full report from the Cardiologist. The diagnosis is only a few weeks old. Until now, I haven’t been clear on the distinction between Cranial and non cranial GCA and have always feared for my eyesight. I have never had severe headaches, jaw claudication or eye issues. It seems now that may not have been a danger. My main symptoms have been constitutional with leg pain and burning feet. I have always been prone to headaches. The fatigue and malaise have been profound. The only cardiac test that showed the Aorta problem was the echocardiogram. Maybe you could be referred to set your mind at rest. It is a logical test to give to a PMR sufferer. You could go armed with information that winfong supplied in his first link.If I had a severe headache and pain whilst chewing, I would prepare for a long day at A&E. I did once and was taken really seriously with my PMR background and head pain. I was given a CT scan amongst other investigations. That day, I was considered one of their potentially, most serious cases, although they didn’t find the halo cells. We need to push unless we are blessed with a curious Rheumatologist.

[Bling123 in reply to SheffieldJane]

Thanks for your detailed reply, I'm afraid we don't get that kind of treatment. I have been to see about my jaw and she seems to think its a muscle and clicking jaw problem even though I explained all . I seem to be fighting all the way .The pain at the moment is not too bad I have gone up on my steroids and just trying to sort it myself . I'm so thankful for this site x

[DorsetLady PMRGCAuk volunteer in reply to Bling123]

Maybe have a look at this - TMJ/TMD can present similar symptoms to GCA -nhs.uk/conditions/temporoma...

[Bling123 in reply to DorsetLady]

Thanks x

[winfong]

Actually, I have seen that one before. Always helpful to see anything with this stuff though. Here's a couple more that are a little more recent:

- bmcgeriatr.biomedcentral.co... (scroll down to the good stuff)

- njmonline.nl/getpdf.php?id=...

[SheffieldJane in reply to winfong]

Thank you for sharing these articles. A brief first read has been clearer than the article I found. It also reaffirms that I am incredibly fortunate in my brilliant Rheumatologist Dr Sarah Mackie. I had the benefit of almost all the investigative tests mentioned and the giant cells were found in my armpits, by a specialist ultrasound scan. My ascending Aortic Artery shows abnormal dilation and this will be monitored.This thread maybe a useful addition to FAQs, particularly in cases like mine where PMR persists for years and it is unusually difficult to get off Pred. without feeling pretty ill. Especially given how slowly information seems to filter down to some doctors. Tests should be routine for PMR sufferers.

Thanks again winfong.

[Jackoh]

Thanks Jane.

[cycli]

I hadn't read this. Useful info. I'm being monitored for aortic issues so ok. there. Thanks Jane.

[ncfaaeos]

Many thanks - very interesting.

[SheffieldJane]

Yes do read winfong’s links, I found them enlightening. I hope your tests go well. I am not sure of the implications of my diagnosis yet. I am guessing that it has been caught early and will inform my future treatment and investigations.

[Nightingales]

Thank you for this Sheffield Jane. I was amazed to see a journal article recently about GCA of the breast. All the more because I am waiting for the results of a biopsy for a mystery rash on my breast. This rash happened at the time I was having a horrible flare that I was convinced was GCA but the US was negative. I promised an update on it last year but it has taken at least 10 months to get to the biopsy. Unfortunately, I found the article after I saw the dermatologist so I wasn’t able to ask if they could look for giant cells in the biopsy. I am tapering down to 9 mg now and have lots of pain but it’s mostly osteoarthritis I think.

[PMRpro Ambassador in reply to Nightingales]

If there are abnormal cells present - the histopathologist will see them!!!

[Nightingales in reply to PMRpro]

Thanks, that’s reassuring. I have become a bit if a doubter 🥴

[SheffieldJane]

It is certainly worth mentioning to doctors as a possibility. It is definitely not yet generally on the radar of all medics. Good luck with the biopsy!