First line of my PET CT report in case you can't read the photo
Clinical Information
?active vasculitis. Urgent please. Large vessel vasculitis diagnosed on CT PET 2 years ago, has been on reducing dose of steroids (pred 5mg) and tocilizumab, but anxiety +++ related to dose reduction, reports increasing headaches.
Has this come to you as a Copy? Are you booked to see your Consultant or who ever requested the Scan?
Sounds as if it requires follow up - and who is originator of these words?
Please speak to your Rheumatology helpline or GP..
It seems they are asking for a whole body PET Scan and they have given a little history about you under Clinical Information. I assume you should gave someone contact you about another PET Scan.
I should have been clearer. This is a copy of my PET CT that I requested and have just picked it up from the GP.
I feel it reads as if I am completely neurotic, when actually I couldn't be further from that.
It goes on to say....
Findings
There is no significant large vessel vascular metabolic activity to suggest active vasculitis, but please note that glucocorticoid therapy greater than 3 days may reduce the sensitivity of PET CT imaging for vasculitis
And so apparently the nurse rang me to tell me that my consultant has written to me to tell me that I no longer have LVV, and that she was right all along.
Can't even begin to tell you how I feel about her right now.
Despite the fact that the radiologist reporting it is pointing out that the patient being on pred probably nullifies the result.
Personally I would object to the anxiety comment, would declare breakdown of trust in the team and seek care elsewhere. And complain about the nurse's total lack of empathy,
However, in fairness: all the request is actually saying you were dx'd with active vasculitis 2 years ago, have been managed with pred and TCZ BUT are complaining of increasing symptoms again. Which is causing you considerable anxiety (hardly surprising). The request is urgent to establish if the vasculitis is now active - as opposed to in remission and NOT active. The result is that there is nothing showing on the scan they did - BUT with the caveat that since you are already on pred the result is not reliable. It is the same as a TAB - a negative one does NOT mean it isn't GCA,
What ever she wrote was before she had ever met me face to face in the past 25 months. The last time she spoke with me was April 2021 (she forgot to ring and I rang the nurse, so she then rang) and then again in July this year to tell me that TCZ was stopped. So how she manages to talk about high anxiety is an interesting one. I don't do hysteria, not even when I could see my husband was never going to get out of the hospital, regardless of what the consultants were saying, although they did concede in the end and admitted I could clearly see things that they didn't.
I have made an appt with Rod Hughes for Tues 20th, week after next, mainly as I have been ill with what I can only term as old fashioned flu with a temp of 40 for four days and then 38 for a further two, so feel I need some strength back to drive that far.
But yes, I need to do something regarding my care, just not sure who to write to as I am never going back to see either the nurse or her.
Even my GP pointed out the statement re being on steroids.
I just hope that Rod Hughes doesn't feel I am not worthy of taking on as an NHS patient as I am not financially set up for private care with no insurance.
I am strong enough right now to be as mad as I really want to be. Arghhhh
Definitely needs a complaint though, They fact you questioned the new symptoms is "anxiety" if she has decided there is nothing wrong.
Agree with the others that you should be discussing this report with whoever requested the scan. In a previous post you mentioned that you had reduced your pred dose quite radically prior to the scan, so that could be the reason they are suggesting the vasculitis may have been "? active" on the day. I think you're now on a higher dose than 5mg of pred?
As mentioned earlier, she doesn't feel she has anything to say and so got the nurse to ring me to tell me I no longer have vasculitis and to reduce the pred as quickly as possible.
I had gone up to 10 and then she told me to cut back to 5mg to have the petct.
Everything has been yo-yoing on that front so am now trying to do a sensible slow taper.
Hi ya. Just to add I was in 6mg Pred when I had my PET-CT and it showed widespread LVV. So although it’s ideal to be on minimal Pred for the scan if disease is there enough it can be picked up. Good luck going forward. It’s quite the ride isn’t it?!!!
Thank you. How long had you taken pred by then?
I’d been on Pred three years for PMR so lower doses, under 15mg. So are they saying you are technically clear of LVV now? I wasn’t sure if you’d had the PET CT or not
PET/CT scan and horrific increase in PMR pain 
How do you know when to start tapering?
GCA and Rip van Winkle!
