PET scan report - confused

[Curlacious]

Hello,

Attached are results of my PET scan for which I was told by my rheumatologist doesn't show evidence of large vessel vasculitis (LVV).

However upon receiving the report the wording seems to suggest possible LVV.

The conclusion says: "Mildly prominent activity within the large vessels, findings are non specific. No high grade uptake within the large vessels to definitively suggest large vessel vasculitis"

I am very confused, as I was hoping this could finally rule in/out GCA.

Does anyone have any understanding of PET scans in this area?

[Phoebenooby]

hi, I had a pet scan last year as I was diagnosed with peripheral artery disease in 2023 a few weeks after PMR onset. I could never get my head around there not being a connection, My results were inconclusive also. My femoral arteries are definitely blocked but the scan doesn’t show with what… findings were possible focal vasculitis… I’m due to have another soon. Still have the same claudication in my calves.

[Curlacious in reply to Phoebenooby]

It's rather confusing isn't it? I was under the impression any FDG uptake similar to the liver is evidence of significant inflammation.

[PMRpro Ambassador]

You need to discuss it with the rheumy who could discuss it with the radiologist.

[Curlacious in reply to PMRpro]

Ah I see. I'll try that way, thanks!

[Advocadotoast]

My PET very clearly showed LVVGCA , PMR . My Rheumatologist showed me my results on screen but added they were so clear because I was on very low steroids.

Might be worth posing this question about steroid dose and effects on PET to your Rheumatologist.

[Curlacious in reply to Advocadotoast]

Thank you. Yes this is clearly a 'borderline' result on my scan. I am not on steroids so in my case its not a factor.

[Obscureclouds]

Hello your PET scan wording re activity in Large vessels etc is exactly the same as I had. No issues identified with other organs but I was told I had vasculitis and immediately put on 60mg of Pred to reduce to 50 mg after 2 weeks. It was about 6 weeks before I saw a consultant who said I had GCA although I lacked other symptoms such as headache and joint pain. He showed me the scan and to my mind the areas of red indicating inflammation in the aorta etc weren’t massive. By this time my CPR and platelet count were down to normal range. I did question whether the high dose of steroids might solve the condition as quickly as it had come (as per a previous autoimmune condition) to which he got very agitated and accused me of not believing I had vasculitis and that I would need long term medication Future correspondence just says LVV. I was put on tapering steroids at 10mg per fortnight (again questioned Rheumatologist for guidance without response) I had been feeling great and full of energy but going from 30mg to 40mg after 4or 5 days my fatigue was so bad I could hardly get out of bed. Not sure whether this was reaction to such a sudden drop of Pred or a return of my LVV symptoms but, in case the latter, I do think you should follow up for further advice

[Obscureclouds]

Curlacious. Sorry I may have misled you in my post as I now think my PET scan may have said moderate rather than mild activity. Apologies

[Curlacious in reply to Obscureclouds]

Thank you for sharing, this is very helpful. The wording of mild or moderate is very subjective. Whats interesting is that it is similar to the liver activity. Which in my understand implies LVV (or at least something causing fairly notable inflammation)

[Obscureclouds]

I’ve now revisited my paperwork but note I only had the reference to the activity in my large Vessels. So I was just told verbally that there were no concerns with Liver, Kidney etc activity. My post also should have said that an issue arose reducing from 30 to 20mg ( I think when writing I had “down to 4 tablets” in my mind) Good luck