The result - PMR!

[Bramble2000]

after all this faffing around, the pet/Ct scan shows PMR, no evidence of GCA.

Starting on 15mg Pred for a week, then 12.5mg for a month, then 10, 9, 8 etc for two years. Methotrexate will be added in at next appointment at the end of January in the hope that the Pred can be tapered faster than usual. He’s testing for Rheumatoid Arthritis and blood cancers. That’s it. I’m relieved but utterly dreading the whole Pred thing again.

thanks for everyone’s help and support. Happy Christmas. Xx

[PMRpro Ambassador]

I do hope he apologised for leaving you to suffer. And filed away for future reference that even 52 year olds can develop PMR.

[Bramble2000 in reply to PMRpro]

No. I didn’t get an apology. X

[SheffieldJane]

well done for standing your ground! I hope you have a smooth ride. 🥂

[Maisie1958]

So sorry you had such a rubbish time, any consolation perhaps is MTX has worked brilliantly for me . Hope you have a decent Christmas- all the best 💐

[123-go]

Couldn’t make it up, could you? Good luck and best wishes.

[Bachfugue]

Hope at least your Christmas brings some joy with decreasing levels of debilitating pain.

[cycli]

good luck on your journey. Wish I could get somewhere near your 15mg.

[arvine]

Hello Bramble, Im afraid I didn,t see or follow your original story, sounds like you were on pred for 2 yrs then pmr free, have now had set back and starting all over, very discouraging if that,s the case, however, I am interested in PMR being diagnosed from a PET SCAN, I have been under the impression, with all the reading, learning about this disease, that it,s hard to diagnose, and mainly diagnosed from symptons? what type of things are found in a scan to determine a PMR diagnosis please, and of course going forward, hoping future tests don,t detect any more serious conditions, all the best to you there, thank you

[Bramble2000 in reply to arvine]

Copy

PMR diagnosis via pet/Ct scan in isolation. I also have high ESR/CRP. Rapid imp on Pred

[arvine in reply to Bramble2000]

I see, well thank you, it appears the report rules out other possiblities, which result in suggested PMR, from raised markers, and symptons, thanks again

[PMRpro Ambassador in reply to arvine]

The PET-CT is the only conclusive scan for PMR since it shows the typical regions of inflammation around the joints - and that had been mentioned frequently on the forum so you must have missed those posts.

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

has some pictures with the areas highlighted in yellow and green.

So does this

academic.oup.com/qjmed/arti...

where the increased fluorescence is arrowed

[arvine in reply to PMRpro]

well yes I suppose I did miss, but wondering why dr,s and rheumatologists, don,t order that scan more often then for patients with suspected PMR, seems Ive read a lot about this condition being diagnosed based on symptons only, and inflammation markers,?

[PMRpro Ambassador in reply to arvine]

Because it is an extremely expensive test and not universally available. The scanner costs in the millions and each test is also expensive as a radioactive tracer is required. It tends to be prioritised for cancer patients and there is usually a waiting list.