Hi everyone,
I last posted around 12 months ago but have been following the forum and reading the posts since then.
As a quick recap I am now 47 years old, I was diagnosed with PMR in January 2022 following a blood test that showed raised ESR and CRP markers. I was fairly active prior to the symptoms starting, I first started experiencing symptoms in my hips and surrounding areas and the symptoms gradually got worse extended into my neck, shoulders and then elbows. By the end of Dec 2021 I was in significant pain and struggling to move. Following a blood test in January 2022 my doctor diagnosed potential PMR and put me on 20mg of Prednisolone. Within 2-3 days there was a major improvement in symptoms and I reduced to 15mg in early Feb 2022.
Since then I have continued to taper and in Dec 2022 I was down to 7mg. Since then I have had a few bumps along the way but by April 2023 I had managed to taper to 4.5mg.
However, I then had a major flare in mid May and I went up to 10mg for 10 days which calmed things down. I then dropped to 7mg and have remained there since and feel OK.
In hindsight, I suspect I tried to drop too quickly between 7mg and 4.5mg and even though I felt OK at each taper point I think my pain levels were increasing but I hadn't quite appreciated it.
Can anyone recommend a good way to track how you feel each day as I struggle to know whether I feel slightly better or worse than yesterday, last week, last month, when I first starting taking pred etc. I do write a few notes each day but wonder if there is a better way, perhaps doing a standard set of movements each morning / evening and trying to score movement and discomfort ??
At the moment I am on 7mg and will try a slow drop to 6 or 6.5mg shortly.
My GP has been very good so far and checks in with me regularly, he has been happy for me to manage my pred levels myself but when I mentioned I had gone back up to 7mg he suggested I see a rheumatologist. I live in the West Midlands and I was wondering if anyone could recommend a good rheumatologist with PMR experience, I am willing to travel. I recall seeing Rod Hughes mentioned a few times.
One last question, when my symptoms are at their worst I get neck pain, it is right around the C7 vertebra is very sore to the touch if I press on or around the joint. This does go away with a higher dose. I know there is no such thing as standard PMR symptoms but does anyone else experience this or does it sound like it could be something else ? Burisits perhaps ?
Thanks for taking the time to read my post and look forward to any thoughts.
Thanks
Matt