What is the value of PET-CT scan?

[krillemy]

What is the value of PET-CT scan in PMR or other systemic autoimmune diseases? I just had one today, and I honestly do not know what they are looking for? Is it just to role out cancer ? I am still in the process of diagnosis - again.

[Arflane97G]

I had one when I was referred to a rapid diagnosis unit and although pmr was suspected the approach seemed to be that all other likely options had to be ruled out as the symptoms of pmr are similar to other conditions. No one ever said the word but I guess cancer was what they were looking for. Results all clear and I was prescribed pred a few weeks later which was an enormous relief- best wishes, can be a very worrying time

[PMRpro Ambassador]

No - not just cancer but that is why we usually have to wait ages because cancer patients get priority. It is about the best medium for picking up the inflammation in the various typical places.

pubmed.ncbi.nlm.nih.gov/285....

ncbi.nlm.nih.gov/pmc/articl...

is the full text with lovely pictures showing what it can look like! Open Fig 1 in a separate window to see it properly.

It also picks up any large vessel inflammation in the aorta and its branches. Unfortunately, once you are on above about 10mg the inflammation is damped enough to interfere with the scan.

[krillemy in reply to PMRpro]

Thank you so much. I will read. I have been suffering without pred. since November, so if anything is there they will see it I guess

[PMRpro Ambassador in reply to krillemy]

Should do - do tell us when it comes through.

[krillemy in reply to PMRpro]

Yes, off cause I will let you know

[krillemy in reply to PMRpro]

Very good articles AND pictures. I wonder though why they do not scan hands and feet - that is where I have pain and swelling

[PMRpro Ambassador in reply to krillemy]

Maybe because they don't equate PMR with hands and feet? Even though it is finally being accepted that RS3PE syndrome probably IS also part of PMR.

[krillemy in reply to PMRpro]

They partly do here in DK, however regarding myself, they do not think it is PMR anymore because my CRP is normal - after two years they are still trying to find another diagnosis. Just now they may have a new clue, as I do not respond to lidocaine, and they had to stop a biopsy.... I let you know. Still think it is PMR

[PMRpro Ambassador in reply to krillemy]

My CRP has only been raised once - on a day when I was having a bad episode of atrial fibrillation which also raises CRP. Back to normal the following week when it was checked. There are multiple versions of PMR - we just have one of them ...

[Coffeebeans]

For me when I had a PET-CT they were checking for cancer (I was 46), if the inflammation looked like PMR and for any other large vessel vasculitis. Anything abnormal that takes up the glucose shows up like a lighthouse.

It also had the benefit of showing a small patch of collapsed lung(!) And a thickened patch of mucosa in my sinuses - in a place where I have complained of pain for years and no-one has found anything previously.

It's good, they are being thorough.

[Sophiestree]

The PET scan for me gave me my diagnosis of LVV after having at least 10 scans by then (MRI/CT/Ultrasound) as I did not present with classic symptoms. But I do think it was to check for cancer by then as they didn't know what was going on, other than high inflammation markers. I walked out of the hospital at 11.00am and they rang me by 2.00pm to give me the diagnosis and to got for a steroid i/v. I'm grateful to the infectious diseases consultant who decided to take me on as a PET scan had not been suggested before that after several months of being unable to do anything due to high fever and pain.

[Rugger]

My PET-CT scan showed up a new diagnosis of Large Vessel Vasculitis in my aorta and its branches, as well as active PMR, which I'd had for nearly 4 years. I had it on Bonfire Night in 2019 and lit up like a firework display! 🎇

[springeramber in reply to Rugger]

Yes - same as Rugger but not PMR - had suspected GCA for 2.5 years - first thing they said was it is not cancer!!

[krillemy]

Well - on my way to meet the doctor at the hospital for the PET scan answer (I read already that there is no malignity) - and a new plan for trying to find a diagnosis OR at least find a laboratory sign of disease. The last time a muscle biopsi had to be stopped as lidocaine did not work on me. That might be a clue he said, but my experience is that ones they talk to their superior it´s a different tone. I am VERY nervous ----- really to again be shown the door back to a family doctor who does not know what to do.... info follows

[PMRpro Ambassador in reply to krillemy]

Good luck ...

[Rugger in reply to krillemy]

Let us know the outcome. Thinking of you today.

[krillemy]

So -as I feared. They are not willing to do the muscle biopsy under general anesthesia and that will be the only way, when I do not respond to lidocaine. I argued that my genes should not put me in a less fortunate position... He had CLEARLY talked to other doctors, because suddenly, I was already well examined, and the MRI (legs) and the PET-CT (trunk and head) did not show anything nor did all re repeated blood work (ANA ect.). So he would try to get me back to neuromuscular dept. for either a genetic evaluation (he did not sound to optimistisk here as he did last) OR a new biopsy. I don´t know - I am a just lost. My hips are killing me know, and I just want to get back on pred.

[krillemy]

I still think it is PMR -

[PMRpro Ambassador in reply to krillemy]

Would anyone offer a steroid shot for bursitis?

I'm sure they are having great fun - it wouldn't surprise me if they are getting stuff together for a paper - but it is appalling to leave a patient in pain when they know there is a solution. You are being condemned to a life of pain and disability without a really good reason.

[krillemy in reply to PMRpro]

Yes, thank you for your support. I have stockpiled pred. - so while they are getting the paper together, I plan to start pred. again. My GP is new and German, I think he might be willing to go with the diagnosis, npw that everything else has almost been ruled out

[PMRpro Ambassador in reply to krillemy]

Hope so - I still remember how disabled and depressed I was without pred.