query re PMR

[Alloty]

Diagnosed GCA September 2022, loss of vision in left eye, prednisolone and Alendronic acid, completed taper by February 2024. Lots of symptoms during the last months but persevered and began to feel better after a few weeks. However this didn’t last and experienced lots of issues - shoulder, arms, hips and lower back pain, poor sleep, night sweats, couldn’t turn over in bed or sit up without pain, stairs one step at a time, exhaustion, etc. Rheumatologist organised a PET - CT scan and sent results to my doctor saying she could see PMR signs (she didn’t give details) and asked him to arrange a blood test and follow up, she has discharged me to his care. Big fight to get an appointment (the only one I can get is in December) but after breaking down on the phone a blood test was done. The doctor called to say my CRP and ESR are normal but given the symptoms he would try 15 mgs of prednisolone - symptoms have gone and I’m feeling fine for the first time in two years. I’m puzzled as to why I have symptoms but inflammation markers are normal.

[DorsetLady PMRGCAuk volunteer]

Couple of reasons, studies have shown that up to 20% of patients with PMR never have raised markers, and even if they do, they very often lag behind symptoms.

If people don’t know anything about PMR, they may think the first few months of aches/pains are something else, so the inflammation has had a chance to build up a lot more than yours did because you reacted and got tested quicker.

Just because yours were raised for GCA, doesn’t mean this time isn’t PMR because they aren’t ..and having been off Pred after 18 months or so, highly likely. You may well have had it before as well but it was masked by GCA doses.

[Alloty in reply to DorsetLady]

Thanks, very helpful answer.

[PMRpro Ambassador]

Your rheumy - very sensibly - did a PET-CT and diagnosed likely PMR. Why didn't SHE initiate pred and discharge you back to the GP for ongoing care? Nuts.

PET-CT is probably as definitive a diagnosis of PMR as you will get. This paper shows the sort of signs she will have seen

academic.oup.com/rheumap/ar...

You were obviously showing PMR symptoms as part of the GCA clinical picture long before you stopped pred - and had you found us back then, we'd have told you so! But all's well that ends well - shame you had the uncomfortable period in the middle.

[Alloty in reply to PMRpro]

Thank you your reply and the link, very interesting and very relevant to my situation. Unfortunately I haven’t been well supported through my journey, I’ve seen 3 different rheumatologists, never the same one twice, and from the start they passed me back to my doctor for ongoing management, who did nothing, I had to fight for occasional blood tests. It now looks like I had severe PMR symptoms as I was tapering off the GCA meds but I didn’t know and thought I just had to grit my teeth and get through it.

I’m now much more informed, thanks to the advice and support of groups and individuals.

[PMRpro Ambassador in reply to Alloty]

Now you have found us, stick with us. Well keep you right - and educate your GP via you too.

[ChoralG]

This happened to me too. My ESR was normal and yet I could hardly dress myself for the pain and stiffness. PMR was, however, the diagnosis and I was also started on 15mg daily. This seems to be a common situation. Glad you finally got your appointment with the doctor. December is not so far away and blood tests usually arrive with your GP within 24 hours, so hang on in there if you can. I am now down to 1 mg a day, so things will get better! All the best.

[Alloty in reply to ChoralG]

Thanks, seems a very common problem. Hope you continue to improve.