Possible GCA and PET SCAN

[pomeranion]

I am struggling getting a positive diagnosis for GCA. I

have PMR therefore when GCA symptoms flared I upped my Prednisolone dose to 60mgs. So far I have had negative ultrasounds and left temple artery biopsy. Although the biopsy showed medial calcific sclerosis. My Rheumatologist recommended I reduced back to 9mgs. I have been going back and forth with him about my ongoing painful symptoms. They are all indicative of GCA. I have just started to get some relief today after about 4 weeks. Even my PMR is better. A new all time high reaching in my cabinets. I have Osteoporosis and concern for Aorta complications because of the calcium deposits. I have been referred to a Cardiologist. I have an appointment tomorrow. I realize the pred dosage is excessive but I am really scared to reduce. My Rheumatologist I believe is at a loss. Now to get to my question. He has suggested I have a PET SCAN. I would appreciate any information and input from all the knowledgeable people here. It is a very expensive procedure. I need to check my insurance if it is even an option. So many details to be addressed. Please help if possible. Thank you.

[PMRpro Ambassador]

Won't do much good unless you reduce the pred dose immediately and get well under 10mg before the scan is done. PET-CT is very sensitive to pred dose and also doesn't necessarily show much in cranial GCA since the brain has such a large signal in PET-CT I doubt it would show a great deal as it swamps anything else.

The medial calcific stenois can produce pretty much all the possible GCA symptoms - they are due to reduced blood flow and several conditions can replicate them. According to the links I gave you before, the effect of the medial calcific stenosis will vary over time and the symptoms recede which would account for the effects you have experienced. I think your rheumy is probably right about dropping the dose - and you could try to see if the symptoms return.

[pomeranion in reply to PMRpro]

Wow!! Didn't expect the pred. reduction recommendation. I am going to relay all the information about the PET scan not being effective because of the high dose pred. What would I do without this site? Also, I am also going to pick the Cardiologist's brain on his knowledge and any and all of his recommendations. Please refresh me on the links about the medial calcific stenosis. I have had such bad brain fog and confusion as some of the symptoms that have added to my anxiety. I truly pray that all this is just the calcification and there are remedies that can be addressed. PMR and Osteoporosis is bad enough but after all I've learned here I really sympathize with everyone suffering with GCA. What an additional curse. As always you are a wealth of information and advise.

[pomeranion in reply to PMRpro]

Sorry I do have the links saved to my favorites. I took a break and remembered. As I said FOGGY. Looking forward to more answers tomorrow at Cardiologist appointment.

I will keep you posted.

[PMRpro Ambassador in reply to pomeranion]

Anything you get as a reply in a post you wrote you can find from your profile. It lists all the posts and replies you wrote.

Mind and make a bullet point list of what you need to ask or know - with a copy for the doctor. Explain you need it because of brain fog. And if possible - you can ask to record a conversation for the same reason so you can go back and check exactly what was said later.

[Sharitone]

I had a PET/CT scan after 13 months of pred and 3 weeks of 60mg. I don't know what it showed, but diagnoses since have varied from GCA-LVV-TA! The only definite nugget of info I was given ({by a rheumy nurse) was that it 'showed some large vessel involvement'. So if your insurance covers it, it may be worth having, but it's by no means conclusive. Unless, of course, the evidence is needed to give you some other drug, such as Actemra. It depends on how your health system works.