NRAS
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PMR

Hi everyone just some advice needed please, my friend has been diagnosed cautiously with pmr as she has severe pain in shoulders, dr has given her oral steroids at 20 mg think its pred? Could you please answer her question for me, will she put on weight as this is a main worry for her? Also she is only 44 and we've read it's unlikely pmr I'd under 50, her er said ra usually affects hands and feet first so unlikely it is ra? I'm very uncertain about her diagnosis, she's had blood tests her rf is negative and her esr is 18.she really doesn't want to take steroids at all but told this is only thing that will help. Any help and advice would be greatly appreciated thanks Michelle xx

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Steroids do tend to put on weight,but the dr wouldn't give them to her if he didn't think she needed them. I am not sure what pmr is sorry. sylvia.xx

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Thanku Sylv hope you're ok xxx

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Hiya Mich sorry I don't know what pmr is either .....hope your friend gets on ok xx ps doc signed me off for 2 weeks until my hours at work sorted, my back pain calms down and until had injectable Methx appts x

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Claire I will chat later at work til 3 you take care lots of love xxx

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Ok lovely x

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Polymyalgia rheumatica sorry.theres a fine line between the two xx

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PMR usually comes with a very high ESR not only 18 and is usually over 60s but that doesn't mean always I suppose. My mother in law has recently been diagnosed with it in her 80s and the Prednisolone worked wonders almost instantly. This is the main treatment for PMR but it usually goes away after a few years maximum - although sometimes (rarely I think) it can turn into something worse but I can't recall what. Maybe you should go back to the doctor with her and ask questions on her behalf if that's possible? Tilda x

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Thankyou this is what we thought too xxx

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I agree. However, High sed rate is not always there. Steroids is the gold- standard for diagnosing PMR. Unfortunately, I've had it for roughly 15 years.

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Hi

I started with pain in my shoulders and ribs 18 myths ago I was 51 . Dr said it was PMR even though I was considered young ,he put me on 20mg and increased it to 30mg. I have put on 3st Please ask your friend to push for a second opinion I was sero negative and did not have any swelling or pain in hands or feet just pain in my arms and shoulders. I have very active Ra and lots of swelling now. Steroids masked the true extent of my ra for too long. Tell her to be firm and avoid steroids in high doses if poss.

Good luck

Lorraine

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Thank you Lorraine I am going to show my friend this tomo,I think I will go to the drs with her for back up,thankyou for taking the time to write,she will appreciate it.thankyou love Michelle xxx

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Good luck keep me posted have been there, will help in any way I can

Lorraine x

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I will let you know how she gets on,she has drs nxt tues xx

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Has she been diagnosed by a rheumatologist or a GP? If she has only seen a GP, then I'd strongly suggest that she ask to see a rheumatologist, because it seems GPs tend to over-diagnose this. Because the treatment is usually 1-2 years of steroids, it is very important to get the diagnosis right. If she is under 65, then definitely insist on a rheumatologist opinion as it is very rare under that age. If you want to look at the diagnostic criteria its here: cks.nhs.uk/polymyalgia_rheu...

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Just read your post again - that really does not sound like PMR at all if ESR only 18 and she is only 44. Tell her to absolutely insist on a fairly urgent rheumatology referral, especially as she has already started taking steroids. At that dose she is going to have to be careful how she tapers down off them if she is on them for any longer than two weeks. See the link in my post above

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Hi,

I started with PMR about 15 years ago when I was in my 40's. Terrific pain in my neck and shoulders which caused bad headaches. Really so bad that some days I couldn't turn my head. I paid for masses of physio which helped a little but really the only relief I got was when I was diagnosed with PMR and put on steroids. (Prednisone). The pain was instantly very very much better. I am sorry to say I did put on weight but not mountains of it. I went from about 9 1/2 stone to nearly 11 stone but over a period of about 2years. I have now settled down to around 10 stone but I am now 10 years older so would probably be this weight without the steroids. There is no doubt she will put on weight, but if she is careful she won't get to a ridiculous size. To be honest when I was diagnosed I would have taken anything at all to relieve the pain. I am sorry to say though that PMR can often be a precursor of RA. But maybe you would choose not to tell your friend that.

Oh my bloods did not show any really high levels either.

I hope whatever choices she makes she feels better - she's lucky to have a good friend like you.

Good luck!

Tilstongal

Ps Oh my bloods did not show any really high levels either.

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My friend took all ur advice,went to her gp and has now been referred to a rheumotologist thankyou everyone xx

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She is actually very fortunate to be diagnosed at such an early age, if that is indeed the problem. I knew in my forties that the pain I'd been experiencing was PMR after I did some research. Nobody would give me the steroids (though i had all the symptoms including a high sed rate) as i was"too young")until I had asthma, and all the pain went away when my pulmonologist put me on prednison. Anyway, prednison bringing relief, is gold standard. I wish her all the best. Honestly, I hope it's not that.PMR stinks. The steroids help me to live my life again. I just turned 60 and had to been in pain since my mid 40's. Now I am trying to decrease the prednisone. If diagnosed early enough, I read somewhere there is a better chance of going into remission. Praying she is one of the fortunate ones who does.

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I didn't notice the date. How is your friend?

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