Half Moon face

[Newcomer22]

Hello! I have been aware for several months to what I am calling my “half moon face”. The left side of my face has been slightly swollen. This includes my left eye, which spears to be bulging a bit more than my right eye. It’s all very noticeable once I point it out. I recently visited my rheumy (his physician assistant) who said this isn't something they deal with. (I was diagnosed with PMR last March. I am now on 1mg of pred. I have had inconsistent pain that seem to mimic GCA, but Rheumy and GP do not think it is GCA.) So, I then went to my GP who hasn’t a clue, but decided to take me off high blood pressure med, lisinopril, for 2 weeks to see if swelling would go down. Apparently lisinopril can cause swelling, though from what I’ve researched the swelling usually includes tongue and throat. I have been on lisinopril for 12 years. It’s been 4 days and no decrease in swelling but I have had a pretty good headache for 2.5 days. Took aspirin which really help relieve some pain. Not sure if that is related to stopping lisinopril cold turkey. GP said she would maybe consider a CT scan if swelling didn’t reduce. My question is, will a CT scan identify GCA? And if so, will it identify it while I’m on 1mg of pred? Thanks!!

[PMRpro Ambassador]

You would think that if CT was a good modality to diagnose GCA in general that they would use it - it is used to look for vasculitis in the large arteries in the trunk (aorta etc) - but it hasn't really been validated as a day-to-day diagnostic technique, PET-CT is more useful I think but not universally accessible and there tend to be long waits as it is used in cancer diagnostics so isn't particularly useful for emergency diagnostics before initiating pred and once the patient is taking pred, the value decreases. I doubt that 1mg of pred is going to suppress the signal in PET-CT

[Newcomer22 in reply to PMRpro]

thank you for the quick response. I have been trying to research which is the best for GCA but have conflicting results. It does take time to get to any of these types of scan. Waiting a month for a dexa. My husband had to wait well over a month for a PET scan. I don’t think my GP would consider a PET Scan, but I’ll ask if it comes to that point. I know the Rheumy wouldn’t. He is entirely focused on SED and CRP. Mine have both been excellent and stayed that way throughout the pred. I’m just concerned about all the nagging mimics of GCA symptoms. Nothing consistent but they do keep returning every so often. Thank you again!!

[PMRpro Ambassador in reply to Newcomer22]

There are a lot of things that can mimic GCA and there is no definitive test other than TAB which if positive is 100% certainty and the ultrasound approach which again if positive is certain. However, when negative neither are conclusive - it just means they didn't find what they were looking for, not that you haven't got GCA somewhere else. In the case of the biopsy the lesions form what are called skip lesions - there are areas of artery wall where none are to be seen. It can only be taken from the temporal artery - superficial and non-essential - and it may not be affected. The ultrasound can only be performed on certain arteries that are accessible - temporal, neck, brachial (armpit) and subclavian and can be compressed - and they may not be affected. PET-CT is probably the best for extracranial but once you are on pred it is meaningless and interpretation for cranial GCA is complex. Plus the waits are long. But no-one is likely to approve expensive scans if there is absolutely no indication of something to look for.

[Newcomer22 in reply to PMRpro]

Thank you. After having another dull head ache most of the day, last night I woke up at 3 am with a pretty severe headache. It subsided about 3:45. I actually got back to sleep and then at 5:25 woke up with another pretty intense headache. It’s starting to subside now at 5:50. If I had headaches I wouldn’t worry about these as much, but I rarely get headaches. I think if these severe headaches keep coming I may have to go to ER.

[PMRpro Ambassador in reply to Newcomer22]

Don't leave it too long to seek advice. And if you have jaw pain when chewing or any visual symptoms - straight to A&E and make a fuss.

[Frewen1 in reply to Newcomer22]

Not much help if you can’t get one, but after a week of every possible test, and daily mega antibiotic infusions, my GCA was only diagnosed from a PET scan.

[Newcomer22 in reply to Frewen1]

Thanks! It actually is helpful. Did they do a PET scan of just your head, or entire body?

[Frewen1 in reply to Newcomer22]

Must have been whole body (it was August 2020), as I saw the scan subsequently… clear red patch on left temple, and main aorta. X