PMR under 50 without high ESR ????: I am a 45 lady... - PMRGCAuk

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PMR under 50 without high ESR ????

Female45 profile image
24 Replies

I am a 45 lady who has always been relatively fit and healthy. Approx 4 months ago I started to get very stiff each morning which has got progressively worse as months have gone on. It has got so bad I regularly struggle to get out of bed, and can't do simple things like bend down and can't easily put on underwear or socks. Also struggle turning in bed at night. Stiffens improves once I get going but plays up if I sit for too long at desk or in car Constantly have stiff aching muscles mainly in thighs, hips and neck, although last few months upper arms and shoulders also getting sore.

Not yet had formal diagnosis of PMR as delayed going to GP as stupidly embarrassed by how bad I had become. Had full bloods and ESR was only slightly raised.

Whilst the GP is considering a PMR diagnosis, we are both aware how incredibly rare it is as 45 and with relatively normal ESR.

I am going to ask for another blood test and referral to a rheumatologist, but would welcome to hear from anyone else who was diagnosed under 50 without raised ESR

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Female45 profile image
Female45
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24 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi,

You are right in saying that PMR in under 50s is unusual, but certainly not unheard of, and as for low blood markers, well that’s not in the least unusual.

HeronNS profile image
HeronNS

A study was done which actually used age 45 as a the baseline:

onlinelibrary.wiley.com/doi...

And this article incudes a table which shows PMR occurs, although much more rarely, between 40-50:

ncbi.nlm.nih.gov/pmc/articl...

PMRpro profile image
PMRproAmbassador

Young patients are more likely to have normal blood markers and an atypical presentation.

What was your ESR? My normal ESR is in single figures - and even when raised is about 16-18 and still within the so-called normal range - which is the range of readings found in a population of thousands of (supposedly) healthy people. It isn't a range found in one person. So if your ESR is 25 - that is raised anyway and may be very high for you.

If your doctor IS considering PMR, if he DOES give you a trial of moderate dose pred and it works a minor miracle, I'm in two minds about asking for a rheumy referral. There are quite a few who will laugh you out of the room as having PMR at 45 and you will have nothing if they can't find evidence of anything else as happened to me at 56 - after having had PMR undiagnosed for 5 years. There ARE good ones who are more broadminded - but you have to find them!

Female45 profile image
Female45 in reply toPMRpro

I have no idea what my ESR used to be but it was 23 when tested on 17th July. I am due back to GP on 3rd Nov to do another set of bloods to see if any changes. I was told 23 it slightly raised but not significantly. Am I right thinking normal female range is 0-20

PMRpro profile image
PMRproAmbassador in reply toFemale45

Yes - but YOUR normal might be 5. Or it might be 20. No-one can know. Do you see what I'm getting at?

Daisychain12 profile image
Daisychain12 in reply toPMRpro

Yes. Only once has mine been 30. Usually in single figures but my diagnosis clear from clinical stuff.

SheffieldJane profile image
SheffieldJane

I wish your doctor would give you a trial of 15 mgs of Prednisalone. If you are at leat 70% better, within a few short days then I think you have your answer. Stay with us, there is a lot of support, information and even laughs to be had.

Hindags profile image
Hindags

Please harken to the advice given here. Try to convince you GP to do a short trial of 15-20 mgs a day of Prednisone. It may be immensely helpful diagnostically. As well as providing relief!

Marilyn1959 profile image
Marilyn1959

Hi. Your symptoms certainly ring very familiar bells for PMR. Am I right that these are bilateral? Don't know where you are based but NHS appointment for Rheumy can take months. Months that you don't need to be in discomfort. I went for private initial consultation only to get diagnosis to back up doctors suspicions since my bloods were normal. It was about two weeks later that bloods finally went through the roof. I would advise asking GP for 15 or 20mgs trial of pred. My Rheumy said that if, after a few days on the meds, I was back to 80% of my normal self it would confirm diagnosis of PMR. Since this is a key marker for diagnosis I agree with others - pred trial through GP. At least you would know one way or the other.

I was 58 when diagnosed but believe I have had low level PMR symptoms since age of 48, so don't believe in this over 50 lark.

Have you suffered a trauma or from frequent infection type of illnesses previously. These seem to be quite common precursors to PMR onset for members of this community, so unrelated to age!

See if you can get pred trial. Good Luck!

Female45 profile image
Female45 in reply toMarilyn1959

Excuse my ignorance, what do you mean by bilateral? If you mean on both sides then yes.

PMRpro profile image
PMRproAmbassador in reply toFemale45

Both sides - usually at a similar intensity but not necessarily

PMR2011 profile image
PMR2011

I was 51yrs of age when diagnosed, which is really close to 49! I don’t believe there is a magic age line that PMR is not allowed to cross. It’s more like a curve with some, but fewer, outliers. Agree with what’s been said. Your symptoms sound classic whatever the blood markers say. A Pred trial would be a good way to find out.

AllyRobson profile image
AllyRobson

I was 49 when diagnosed, but had symptoms for about 18 months prior. Started off with stiff hips, which I thought was from running at first, then perhaps a symptom of the menopause. I found it difficult to turn over in bed, put on socks, go up and down stairs and raise myself and out of seats.

My bloods were normal. Rheumy put me on a week's trial of 15mg of pred and relief was almost instant - within a few hours. I can now run again and run every other day between 5 and 7 miles, albeit at a snail's pace......

Female45 profile image
Female45

Can I ask which Rheumy you saw? I too started with very similar symptoms but a lot more have come on in the last few months. Is it normal to have some days when your conditions are a lot more chronic that others? I find it strange that some mornings I can literally hardly move. Painful even raising a leg in bed and really struggle to get out of bed and moving, whilst other mornings whilst I am still very still and achy, I can get up with a lot less effort. (Never what I would say is normal but not completely debilitated).

PMRpro profile image
PMRproAmbassador in reply toFemale45

Bad days often follow good days when you tried to catch up with what you needed to do. And then, having done far less on a bad day, you have a good day...

AllyRobson profile image
AllyRobson in reply toFemale45

I'm on hols at the mo, so don't have details to hand. But from my Dory type memory his name is Dr (maybe mr?) David Walker and he is based at North Tyneside Hospital, Rake Lane, North Shields. I live in Northumberland. Let me know if you need any more info.

PMRpro profile image
PMRproAmbassador in reply toAllyRobson

Dr David Walker, consultant rheumatologist, seems to be part of the Newcastle rheumatology team which covers The Freeman and the Royal Victoria.

Female45 profile image
Female45 in reply toPMRpro

Thanks for the details but I am based near Watford so probably looking at London based hospitals.

PMRpro profile image
PMRproAmbassador in reply toFemale45

Try Dr Rod Hughes, Chertsey. We can guarantee he will listen and allow you to say your part. He won't go into this with fixed ideas. He does private and NHS and his waiting list for NHS doesn't seem to be over-long. If you see him privately he will almost certainly add you to his NHS list.

Google him - you will get his website and links to videos that really give a clue to what sort of doctor he is.

Female45 profile image
Female45 in reply toPMRpro

Thanks for this recommendation, I will certainly google him. Also a huge thank-you for all your feedback it has been great I am hugely thankful to everyone who has taken the time to respond to my thread.

ciy9091 profile image
ciy9091

I am 68 have PMR ESR was only slightly elevated it seems more and more people are getting diagnosed younger now. Why doesn't your Dr try a 5 day course of steroids if it clears the pain you have your diagnosis.

Christine2307 profile image
Christine2307

I had 2 negative Blood results over 2 years but was told by my chiropractor to mention to the Dr that there’s a 10% chance if false negative reading. Getting the flu at Xmas tipped the balance and unable to move had another test and bloods were raised. 2 days on prednisolone confirmed PMR and I’m now in the taper with no adverse affect so far. So worth persisting with the doctor - ask to do a 2 week trial on Pred - you will know within a couple of days. I felt 100% within a few days! Good luck!

Perkey profile image
Perkey

Hi. I live in North Shields and went to Dr Walker as recommended highly by my rheumi in Kentbefore I moved up North. He was very good but did comment he did t think my lead feeling legs could be part of Pmr as you don’t get it in your legs. Welll so many of this forum know the lead leg feeling as part of horrid old pmr. However my doctor let me go back on pred more or less as I felt I wanted to so I feel as if I am treating myself by taking 5mg a few weeks agoi had got myself off them completely so where do I go from here still stiff in legs when I sit too long and and can’t walk very far. I can’t win.

PMRpro profile image
PMRproAmbassador in reply toPerkey

Heavens - what world does he live on!!!! Not my PMR world I'll tell you.

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