Hi all, long time no speak, though I do read and keep in touch regularly. A bit of my back story…. Diagnosed in Dec 2018 with PMR then January 2019 GCA. CRP at diagnosis was 157 and ESR 118. It was a rollercoaster to say the least and for the support from all the fantastic knowledgeable people in this forum I got through it. I finished taking prednisolone after a very slow taper in May 2022, I also was put on Methotrexate (as a steroid sparer). I reduced down off the methotrexate and came off in October 2023 (4 months ago). I’d not had any symptoms for a long long time and felt really well. Now, for the last few weeks I’ve just felt something wasn’t quite right, a niggle here and a niggle there, so being concerned I got my bloods done (I had them done regularly due to the methotrexate) and my CRP was 12 (from 4) and ESR 30 so nothing like the first time around. My symptoms have been a stiff neck, and pain right around the top of my thighs, and a dull ache in the back of my shoulder, which was one of the first symptoms and the last symptom to vanish last time around. I contacted my rheumatology department to speak to a nurse for advice last week as to be honest, I wasn’t sure whether I should be going back to them or the GP (the one who had a good understanding of my condition has left) and obviously my concern is the GCA returning. I’m waiting on a call back tomorrow (from a rheumatology nurse) but I’m unsure what to expect or what I should ask or suggest? Can I ask what your thoughts are in my case as I’m accepting that it seems to be a return of PMR, again completely out of nowhere! What kind of doses would I expect to be put back on assuming I’ve caught it much earlier than the first time around as there was so much tooing and froing in giving me a diagnosis 5 years ago. Sorry for the long post trying to explain. Many thanks in advance for any advice as I guess I’m feeling a bit deflated atm but know it’s a road we all tread!
Is this the dreaded return?: Hi all, long time no... - PMRGCAuk
Is this the dreaded return?
Sorry to see you back. But it happens.
Since you did so well on MTX I think I would ask to restart that, Four months is about right for that to be wearing off.
I did wonder if that could be a possibility. Would MTX alone be enough to flush out any inflammation as my thighs are particularly troublesome today? Thank you
Only one way to find out. Maybe restart the MTX with a flare protocol with 5mg pred for a week or so???? And see what happens ...
Where can I find the flare protocol please? I think I’ll take 5mg now to be safe then ask what dosage of MTX to go back on if they’ll allow this
As PMR says, it happens more often than you think… as for MTX being enough on its own, not sure anyone can say. But you obviously do need something, so please chase Rheumy nurse if you don’t get a answer tomorrow..
Thank you so much … very much appreciated. Hopefully I’ll have a good conversation tomorrow and reinforce my current situation🤞
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