Last week i had an endo appointment due to flushing and my thyroid disease. The endo went through my previous blood results and said that my esr was high at 33. He felt that my symtoms were due to PMR and has written to my GP. I had further bloods done and my esr was 32. I know they are not very high but they are out of range for me.
My question is are these ranges too low for PMR.
Its all very confusing as i had other bloods taken around this time by my crohns specialist and he said my esr was low.
Any help would be appreciated.
Thanks
Christine.
Written by
yorkshiregirl44
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All very confusing isn't it? Glad that your endo has raised the query about PMR,makes a nice change for someone to see outside their field of experience. You will see reading this forum that lots of people have never had raised blood levels despite the fact they do have PMR. The symptoms are the key, but unfortunately not all GPs consider these if the ESR levels are ok. Hope yours is a bit more open minded, and you soon find out what's what.
Thanks for yout reply.. i only joined this site yesterday and dont know very much about PMR..
Yes i think my endo did look outside of the box and joined the dots which has been missing with me for so long.
His advice on stopping my thryoid meds took me by surprise, that said i will see him again and see what unfolds when he gets my blood results after he suggested i lower my thyroxine.
Im looking forward to reading through some posts on here and finding out more about this condition.
Readings of 33 are now accepted fairly widely to be high - it used to be they accepted up to 35 as being normal in older patients. I say older because it starts at zero at birth and then rises through life - and originally it was thought it continued rising inexorably and you could work out what was "normal" up to the age of about 55 using an equation which for women was their age plus 10 divided by 2: 55 plus 10 is 65, divided by 2 gives a top normal of just under 35. It now is appreciated that it rising in a "normal population" was probably because that normal population probably WASN'T normal, they have sub-clinical inflammation leading to raised values.
So now, best practice is that anything above about 20 indicates there is some inflammation present but it could be anything - including a cold or an injury. Having said that, about 1 in 5 patients never develops this "acute phase response" as it is known and their ESR and CRP never goes up whatever happens.
Your Crohns guy may feel that 30 is low for someone with Crohns because that will also raise it - or he may be stuck in the last decade. But if you know what your "normal" is and it is well below 30 then there is something going on. Mine has never gone above the dizzy heights of 7 - and I couldn't move for pain!
However - having a raised ESR and a bit of flushing isn't enough for a dx of PMR. You need to fulfil a lot of other criteria as well including morning stiffness lasting more than 3/4 hour, stiffness that returns after sitting for a short time (myogelosis), stiffness that affects shoulders and hip girdles in particular, sweats, weight loss etc. You don't have to have all - but there are a lot of other things that will cause some of them. And then the symptoms need to respond dramatically to a moderate dose of pred some doctors take that as a criterion.
Thanks for that information its very useful. Iv been going backwards and forwards to my GP and specialists telling them about pain and stiffness and wekness on my shoulder area and hips. Yes i am very stiff even after sitting for a few minutes. Then endo asked me if i could stand from my chair which i could not do without using my hands.
Im also overheating and sweating alot of the time, iv not lost any weight but generally feel awful and struggle to move around. I feel like im carrying a heavy weight and feel over 90 when im 57.
With regards to my esr its been normal up until the last couple of months when it was raised which could indicate something is wrong but what i dont know for sure.
My plan of action is to see my GP, endo and crohns specialist within the next few weeks.
Those are typical signs and symptoms for PMR so 10/10 for the endo thinking about it. PMR isn't the disease though, it is the symptoms of an underlying disorder which can be one of many things which all need to be ruled out before they say PMR. Obviously your endo is fairly confident that whatever is going on isn't in his department. You already have two autoimmune problems so it is quite likely you will develop another (unfair but there it is).
Your GP might be prepared to try you with a moderate dose of pred - as described in this paper:
With the name you have chosen I assume that maybe Leeds is an option for you if your GP insists on you seeing a rheumatologist. Dr Sarah Mackie's team is one of the top PMR groups in the UK - you can confidently ask him to refer you to her.
Hi and thanks for the information you have provided.
Im from Birstall Nr Leeds but now live in Lancs but only just, im quite nr to Skipton so yes Leeds would be fine.
I get confused with some of the symptoms i have, as i have osteo arthritis as well. When im not sweating im overheating with even a little activity. Sometimes my stiffness is so bad i can hardly move and other times theres stiffness but not quite as bad.
I guess im a little afraid of going on steriods if i dont have PMR, but im sure im not alone with this fear.
Do you really have OA? I was told I did - but the symptoms identified as OA have all disappeared so was probably something to do with the PMR. The rest sounds familiar to all PMR patients.
Thats what they keep telling me. OA of my spine,neck and my last xray of my hips said susspected OA. i had xray of shoulders and no sign of OA even though my shoulders hurt the most..no alternative diagnosis was given.
I did say to my GP thst even though i would have pain with OA i dont think i would feel so unwell,,she agreed with that but nothing followed.
Iv a telephone appt with my GP next week and think i will suggest a referral to Leeds.
The basic approach of trying a week of 15mg pred is not a long term commitment. If it is PMR there will be a considerable improvement in the symptoms in a short time which will then return in a similar time frame when you stop the pred. It this doesn't happen then either it is very atypical PMR or it is something else and that DOES require specialist input.
Refer your GP to this paper which was written for GPs to help them diagnose and manage PMR without recourse to a specialist which can, of course, take months:
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