Confirmed PMR after PET-CT

[Coffeebeans]

Hi all

Happy to say that after a truly horrific 6 weeks of fast tapering I am back on 15mg of pred and feeling so much better already.

PET scan confirmed classic presentation of PMR despite my age (46), no vessel involvement and no nasty's.

I'm grateful my Rheumatologist was so thorough but I NEVER want to go through that again.

Thanks for the support everyone.

[Hidden]

Hi. Sad you have pmr but ad you are feeling better on 15mg. Its a strange relief when you know what's wrong and you get a firm dx. 🌻

[Coffeebeans in reply to Hidden]

It is a strange relief. And to be pain free is fab!

[Hidden in reply to Coffeebeans]

😊👍🌻

[jinasc]

Good news, the stress you have been under will have lessened and you will improve now you know. It is always better to know, than not know.

[Coffeebeans in reply to jinasc]

Absolutely. I would rather know even if bad news, got to know what you're dealing with.

[Blearyeyed]

Oddly , what a relief !

At least you know that you can move forward now and have the advice here to help you out.

Take care xx

[suzy1959]

My diagnosis was confirmed by PETscan , and it has been really useful to have clear evidence when it has been questioned by other doctors and even myself sometimes!

[Coffeebeans in reply to suzy1959]

Oh completely agree. The certainty is reassuring especially when you're atypical.

[PMRpro Ambassador]

And do ask him to write you up - we NEED evidence that younger patients can get it too.

I don't really care what it is (within reason at least) - as long as I know.

[Coffeebeans in reply to PMRpro]

Yes, I will mention to her next time I go in around 4 weeks. There has to be a recognition that this does happen..

How s your taper and scan plans going?

[PMRpro Ambassador in reply to Coffeebeans]

Managed to get the scan done before the total lock down here. I got down to 7mg a few days before and definitely had symptoms so hopefully when I do get the results it will show something! But no routine appointments at present ...

[Coffeebeans in reply to PMRpro]

Oh good. That was my fear that everything would go crazy before I got scan and results.

Best of luck with it.

[123mossie]

Glad you’re feeling better, but how does the pet scan confirm pmr?

[HeronNS in reply to 123mossie]

It shows something in the arteries, but there will be experts along who can explain. I don't understand the medical language in the articles myself.

[Coffeebeans in reply to HeronNS]

Yes, it would have shown up if it had affected my vessels. Relieved it didn't!

[Coffeebeans in reply to 123mossie]

It shows increased uptake of the tracer into the muscles and joints affected by PMR. And since mine is classic in terms of places affected it showed that.

[PMRpro Ambassador in reply to 123mossie]

PET scans involve you being given an infusion of a radioactive glucose solution and then them doing a PET and CT scan to identify the structures that have taken up the most of the glucose. Inflamed tissues take up more than other tissues so they can be seen on the scans. They are looking for particular structures to be involved: shoulders and hips for PMR and arteries in large vessel vasculitis and GCA although it doesn't show up for cranial GCA as the brain has a lot of glucose so is generally shown up. You have to be fasting, even a raised blood sugar from breakfast can alter the result!

Pretty pictures of what they see:

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

A shows the structures, B shows where the radioactive glucose accumulated

[123mossie in reply to PMRpro]

Thank you for posting that fascinating article, it underpins the pain we all feel, it’s almost a relief to see that the reason for It can be seen on scans. It demonstrates too the decline in isotope uptake after treatment which also fits in with falling crp levels. Really useful reading for any medic not up to speed with pmr