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.