Hi All, well here I am after my last post still unsure where I'm heading! Last post I was waiting for Bence Jones Protein urine test results for Myeloma that came back negative, phew! My regular GP did back up bloods Serum Protein Electrophoresis and Free Light Chains also for Myeloma and Lymphoma and they also came back negative. I have always had raised ESR and a CRP that jumps regularly in and out of normal range. My ESR at diagnosis was 60 after seven months got down to 16 and stayed that way for a few months then started rising again, now 42 the same as it was in 2016 three years before PMR was diagnosed. In my ladt post I said that I was back up on 15mg of pred, I was on that fir two weeks, then down to 12.5mg for two weeks then down to 10mg which I have been on for the last five weeks! My GP has done another raft of blood tests all of them came back in normal range, she said excellent results for my age but she is baffled over my ESR especially ad I feel great! She is talking of putting me on methotrexate as pred doesn't seem to work for me, I'm not keen to go down that track, but first she is going to run my results by a very good local haematologist to see if he can shed any light on things. My question to you all is does anyone here have or been through the same journey? I feel like I'm getting nowhere on this journey! Sorry for the extremely long post🙂
ESR on the rise: Hi All, well here I am after my... - PMRGCAuk
ESR on the rise
Hi,
Couple of comments -
“I have always had raised ESR and a CRP that jumps regularly in and out of normal range“ - well strange as it may be, perhaps that is normal for you if you say you feel okay and tests don’t show anything.
Your original symptoms pre diagnosis certainly sounds like PMR, and do you have any symptoms now?
Is the only thing that’s muddying the waters the fact that your inflammation markers are high?
As you are less than a couple of years into your PMR journey not quite sure why your GP seems so determined to ‘find” something else and say imply the Pred isn’t working. Or am I missing something?
I was diagnosed in May 2017, so not that far in. I think compared to her other patients I'm dragging the chain in my PMR prednisilone jouney! On 10mg at the moment but feel I should be moving down not stuck on 10mg . Yes, the inflammation markers are the sticking point and all my other bloods such as calcium, lft's, vit's d, b12 and folate, ferritin, iron levels, CMP, U&E's, LDH are all spot on just the inflammation markers are out! I also have psoriasis and would think this would also have a bearing on my inflammation markers.
Or is it PMR at all - could be psoriatic arthritis with polymyalgic presentation ...
Well that's a thought. For year'sxI've been telling various doctors that I thought I coukd have psoriatic arthritis if my elevated ESR came up but there was no follow up on their part, ne even said probably to me! I probably have irreparable joint damage thanks to them!
As PMRpro suggests - maybe not PMR.
Why are you stuck at 10mg- and what happens when you try to reduce? Return of symptoms or raised markers? Or both ?
My GP won't drop my dose until she's spoken to the haematologist for his opinion. It's annoying me that I'm at this dose when there us no need to be!
Well as you discussed with PMRpro maybe you could try a small reduction yourself.
We normally have doctors trying to reduce dose against patients views- but yours is opposite!
Please keep us informed of progress.
Will do. Everything is happening slowly here now as regional Victoria has gone into Stage 3 lockdown again but at least not as bad as Greater Melbourne that's in Stage 4!
Yes, that’s a bit scary isn’t it? But hopefully back under control soon.
Yes, my niece is in Greater Melbourne and said they’re Stage 4 for 6 weeks. Hoping people will follow rules and get a handle on Covid. Where I live in USA there’s too much denial. Stay safe.🤗
Thank you and you too🙂
Why the haematologist?
Wants to run my history by him to see if there is any test she hasn't done that he could suggest. I think my rising ESR has her a bit rattled! She's a terrific GP and very thorough as she said last time I have two autoimmune disorders which could be at the heart of it. Time will tell🙂
Are you under a rheumy? There doesn't seem to be much crossover between the various specialisms, very blinkered views sometimes.
Hello, you say you feel great so I assume the PMR is not there. If so, is the Methotrexate to treat the ESR rather than symptoms or do the symptoms come back when you reduce? Have they wondered about a currently asymptomatic large vessel inflammation?
I previously got down to 5mg. but had a flare, went back up to 7mg. then had trouble with my wrist and another GP put me back up to 15mg! I think the methotrexate is for the ESR. They said not worried about GCA as I have no symptoms. I realky feel well in myself it's just the ESR!
You wouldn't find me taking mtx just to try to reduce an ESR if my symptoms were OK at a moderate dose - it is so non-specific that that is tantamount to a stab in the dark, with a blindfold on and both hands tied behind your back!!!!
Me neither! What if there is some unknown focus of infection and you’re given an decent immunosuppressant? I’d try for a really slow reduction for the PMR. Could there be an asymptomatic large vessel thing bubbling away?
Very possibly I suppose - but it could be all sorts of things. Or nothing.
This is a GP isn't it? Who maybe thinks mtx is a wonderdrug. Can they use it themselves in Australia? Restricted to consultant use in the rest of the world.
She speaks as if she can so I would think GP's can here. She's very receptive to my views so she wouldn't push me if I'm against it.
Think that's the way to go and just keep an eye out on the GCA🙂
I'm with you, I'm not going down the methotrexate road especially in the present climate!
Normal range only means that it is determined from a range of results obtained by testing 10,000 (or so) apparently healthy members of the public - and then you take the range that covers 95% of them. Plotted on a graph it forms the famous bell-shaped curve, the vast majority of people form a peak in the middle. But at each end of that curve are 2.5% of people whose results lie outside that range. With no upper figure to say this is abnormal. Some people are just outliers.
You got it to 16 with pred, that probably is your personal normal low, but there is obviously something inflammatory going on that pred combats. It doesn't mean it is PMR. ESR is a totally non-specific test, it is very sensitive (responds quickly to something) but VERY non-specific. There are loads of things it could be, including a cold. Even age and pregnancy raise the ESR (not that I think that is likely 
)
And a raised ESR is not always a reason to raise the pred or add in other medications - the symptoms are always trumps. So - the bottom line is whether you have symptoms at a lower dose of pred.
By the way, I think it is piglette who always has a raised CRP - and fights with her doctors about it.
Pregnancy would be a push now😂 I had a raised ESR in the 80's but wasn't given the figure. I was reducing well from 15mg down to 5mg before I had a flare and that wasn't much of one, more depression than pain so I feel I should still be reducing!
You are probably correct - if you have no symptoms then maybe you should. Just occurs to me - maybe a PET-CT scan might identify where there is inflammation.
I'll mention this to her during our next telephone consultation which should be within the next two weeks, thanks.
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