When I was diagnosed with PMR in July I could hardly bend down or roll over and was in pain to walk and my blood test came back with ESR 36 and CRP 17. Steroids were a magician waving a wand. Since a month later in August my 4 blood tests have shown CRP <1 and ESR 4 or 2.
I am obviously delighted, but have also been surprised, and had to recalibrate how I feel against the numbers. One time I got 2 I was really thinking GCA was on the way because I was getting twinges and pains in my temples and jaw and a tired jaw one time after some crunchy carrot eating. Another time I'd felt deep hot scratchy feelings in my hips and pains like at the start of my PMR and thought I was flaring up again. So riding on the wave of numbers I've reduced doses and appear to have been none the worse and ignored possible GCA symptoms.
Am I right to trust the numbers?
Another strange thing I've noticed when I reduce my dose is that I get a period about a week or two later when I feel like I could turn somersaults like a child and am full of energy but by 4 or 5 weeks later, when I am thinking about dose reductions and blood tests, I have lots of niggles coming back. But the blood tests are all good!
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Thank you for taking the time to reply. I guess I did have raised markers at the start in my case. So grateful for this forum and experience of others. So many different journeys.
If any symptoms you do have don't increase over a week or two then the numbers game will work - but they can lag behind and can be raised by a lot of other things. A raised number on its own should not result in a kneejerk increase in dose if there are no accompanying symptoms. It should be repeated a week or so later to see if there is an upwards trend. But most people will have niggles now and again - you need to learn about YOUR body and how it reacts.
I don't trust the numbers even though they have more or less followed/lead how I feel. I have to go by how I feel. If many of us left it until we had a blood test it would be 12months or so before we felt we could change the dose. I am very lucky that I get blood tests every 3months or so. In the intervening months I may have 3 weeks when I have symptoms, if its 2 months to a blood test I can't wit that long to nip it in the bud. Also other things like surgery, a cold or stress may influence the markers but if pmr symptoms are controlled still I wouldn't raise pred. I wouldn't just raise pred on the one set of numbers. Really you need to see if it goes up over time and is mapped with symptoms before pred raised. There is a chance of yoyoing if you raised pred everytime the numbers were up and reduced as soon as they dropped. After all the numbers should drop and stabilise before you taper...tbats what pred should do. 🌻
That's a useful thought that if symptoms don't increase over a week or two you aren't missing something due to lag. Certainly I have had ups and downs of the same face niggles for the past 2 months. I've ruled them out as 'GCA needing anything done about it' because I've been fortunate to have had a number of blood tests in that period that have all been so low; basically ESR 2 except for when I had a cold and it was 4. It's certainly what my lovely helpful pro-active GP thinks. I hope that is a fair conclusion.
Maybe I need to recalibrate how I feel with the numbers, remembering how incapacitated I was before treatment. A few niggles and pains doesn't mean PMR is back.
From Dorset Lady's link I do think I may have some sort of vasculitis thing going on, though, because the ectopic heart beats I was getting every 3 beats or so, for a couple of months before PMR, vanished with steroids. But I have started getting occassional ectopics again since I was on 10mg.
I'm horrified that some people only get blood tests every 3 months or even every 12 months.
Thank you lovely people who have been kind enough to take the time to reply.
I think maybe your GP shouldn't rely too much on your ESR - simply because they are very low readings you are getting.
I also have cardiac problems due to the underlying cause of the PMR - mine is atrial fibrillation and it is definitely better at higher doses of pred. One of things that was happening that pred improved has now been dealt with - I have a pacemaker
That is interesting. I think I shall continue to push to go back to the Cardiologist and also referral to a Rheumatologist. What prompts you to say not to rely too much on low ESR readings? Is it just that you never had raised readings? Could it be different if I did once have raised readings? My daughter is also prone to lots of ectopic beats when she is stressed, but she is in her 20s. But maybe I do need more pred to keep the ectopics down - although ectopics in themselves are not a massive problem. Gosh there are a lot of permutations and combinations in this condition! I felt so classic at the start, with stiff hips, shoulders and neck, that vanished within an hour of starting the steroids. Maybe not!
Those of us who have low readings are said to "not mount the inflammatory response" - I assume to the inflammatory process that leads to the PMR/GCA symptoms in our case. My own levels were never out of the "normal range" but they were raised for me personally and the symptoms would have been suggestive of large vessel vasculitis/GCA - and if I had seen my current rheumatologist then I'm sure it would have been investigated. Hindsight is a wonderful thing!!! Bit within 6 hours of 15mg pred I'd had a miracle.
There ARE too many permutations and possibilities - which is complicated but not insurmountable provided doctors remain open-minded.
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