Background: I have PMR/GCA/extensive LVV (aorta, brachial arteries and more). I stopped taking my 25mg MTX in November 2022, when I was admitted to hospital with breathing problems and a bad cough. My consultant at the respiratory clinic says I have mild (5% loss of function) interstitial lung disease, probably due to the MTX, and he and my Rheumy say I am not to take it again. I have been on 5mg Pred ever since and everything feels okay, but as I’m no longer having monthly MTX blood tests I can’t monitor what my ESR/CRP levels are doing. (I have never had any symptoms of GCA/LVV and it was only picked up by my Rheumy by raised inflammation markers, confirmed by arterial biopsy and PET-CT scan.) I saw my Rheumy in January and she has told me to call her at any time if I have any issues before I see her again at the end of March.
Question: I had to see a Neurologist a couple of days ago, and tomorrow I'm having an MRI on my head as apparently I'm now displaying early signs of Parkinson’s Disease (I’m hoping they’ve got this wrong – fingers crossed). My question is this… if there is any active GCA/LVV in my head will this show up on the MRI?
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JanetRosslyn
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I think what I take from those links is what I thought before reading them: it depends what they are looking for! The markers they use make a difference because they illuminate different structures in different disorders. The neurologist might know - but in the UK they aren't usually involved in managing GCA although they are sometimes in other countries.
Plenty to read there. Thank you very much! When I get to the imaging appointment I'll ask there too as I don't know what the Neurologist put on his request.
He was very nice, but a bit 'odd' and kept insisting I had 'Takayasu'. He would not be corrected on this, so I just gave up.
If someone is offering you a diagnosis of Takayasu's, don't worry about whether it is true or not, just grab it and run. I have the same dubious diagnosis and it means that I can continue with TCZ for as long as it is needed. I think the distinction between LVV and TA is somewhat blurred, in any case.
"I think the distinction between LVV and TA is somewhat blurred, in any case."
It is part of the age thing we fight against all the time. One lady noticed that her diagnosis had been changed on her notes after her 50th birthday: Takayasu's had become GCA. When she asked she was told that under 50 it is Takayasu's, over 50 it is GCA, Which is utterly crackers - how can the disease change with a birthday?
Seems a perfectly reasonable thought to me! I am told that NICE were being a touch iffy about approving Actemra for GCA until someone challenged them about being ageist with the guidelines having the "over 50" clause being over emphasised. Oh no, no, WE'RE not ageist. But I have also been part of the process for PMR - I heard ageist undertones ...
In principle modern high resolution MRI should be able to detect arterial vessel wall inflammation (with a comparable sensitivity compared to ultrasound). There are even more sensitive MRI techniques (dark or black blood MRI), where especially the vessel wall is focussed on -- but also normal contrast enhanced MRI should show vessel wall inflammation.
Before diagnosis, I received a black blood MRI, which enhances the contrasts of vessel walls in the MRI by suppressing the blood signal - even though very sensitive there was no inflammation detected (later on also not in the ultrasound imaging) - the only indications for large vessel vasculitis (LVV) were high CRP and ESR values and some but not very strong 18FDG enrichment in aorta and clavicular arteries in the PET-CT. So the conclusion was: LVV but with low intensity inflammation (or as an alternative an auto-inflammatory syndrome with some large vessel involvement). Finger crossed that your MRI shows that all is ok.
Hi. I had an FDF PET-CT scan which picked up LVV. Some radioactive dye is injected prior to scan. The only scan that indicates Parkinson’s disease is a DaTscan. This measures the amount of dopamine in the basal ganglia area of the brain. In PD this is depleted. Fingers crossed it isn’t this as well as LVV. That would be bad luck. Take care.
I can’t answer for sure but before I was diagnosed my inflammation levels were thru the roof. I had an MRI of my head and it didn’t show anything. It was absolutely perfect.
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My GCA/LVV experience
Update on rheumy appt 
PMR/GCA
GCA Tapering
