Hi there, I haven't posted for a while as I successfully came off the prednisolone in January this year (well, I thought successfully).Since then (on March 26th 2024) I had a cardiac catheter ablation for paroxysmal AF, so far so good although recovery has been a bit of a bumpy ride.
I am experiencing some neck and shoulders stiffness and some groin and upper back discomfort, I have also developed episcleritis in my left eye which can be linked to autoimmune.
My ESR has come back at 32 (I am 67 years old) and I have to speak to my GP as he says it's 'borderline'. My CRP is in the normal range.
Do you think my PMR is flaring or could this be residual inflammation from the heart ablation?
My GP says if I had PMR back I wouldn't be able to lift my arms above my head which I can.
Thanks
Karen
Written by
Karendeena
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!£**%$ hell - where on earth do they get these ideas? I've head this chestnut several times recently - not everyone experiences all the PMR signs and symptoms, especially at the start of a flare.
The time scale is about right for the underlying autoimmune part to have been at a very low activity and the dripping tap of inflammation has finally filled the bucket and is starting to spill over the edge. It happens quite a lot really - sometimes it is a few weeks and the patient notices, the longest I've come across was 6 months and my friend's super rheumy in Basingstoke recognised it for what it was immediately and said, back to pred. If they let you do the flare protocol quickly - 5mg for a week or so and drop straight to 1mg - you may get away with it. Even 1/2mg every other day can be enough to keep things under wraps - but zero pred is a step too far.
I saw the Registrar again this week at follow up appointment. They totally messed up my appointments and rearranged for third time. Arrived and it was the Steroid Injection clinic. He starts by saying which knee am I doing 🙈. Long story short. He still insists it’s not PMR again as it only lasts 2-5 years quote ! Reminded him my CRP was raised plus my symptoms. He said it will be the OA in your hands raising it. I give up….. He ended by saying I had to go now as time up as really it is the Injection Clinic, but would write to GP and agree for me to continue on Pred reducing 1 mg a month. Crp now down to 7 as of last week so that tallies with Pred working, plus I am pain and stiffness free. GP did agree with me several weeks ago re PMR re surfacing. Hence start of Pred again.
I'd suggest that if these symptoms are similar to what you experienced when you officially had PMR, and you've only been off pred for a few months and in the interim had quite a stressful health-related time, chances are it is a PMR flare. If doctor seems skeptical you could suggest a pred trial. If your pains aren't responding well to ordinary pain medicine, but do to a moderate pred dose, then you probably have your answer. In my (limited) experience you wouldn't need to go back to square one, and would probably be able to taper more quickly back to what used to be your lowest best dose. I don't know what the best trial dose should be. In my case I took 10 for a couple of days, then tapered very quickly to 8 and more slowly back down to my previous lowest best dose (which was usually around 2 mg). I had to stay on pred for some time after that, but the second trial of zero has so far proven successful. I guess PMR simply wasn't done with me last time. But time will tell, not counting my chickens until I get to a year of zero pred!
I hope your doctor is supportive, and also that your health issues settle and you recover well over the next little while.
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