New to all this

[Nanny71]

Hi I’m 71 yrs old just been diagnosed with pmr. At the moment only slight pain in shoulders and arms. Goes When I’m up and about. I’ve been advised to take steroids but am reluctant at the moment.Has anyone else felt like this and what did you do x

[yorkieme]

I’ve been advised to take steroids but am reluctant at the moment.Has anyone else felt like this and what did you do x

Hi Nanny 71 and welcome on board.From an experience point of view you have asked the only question that I feel qualified to answer at this moment in time.

Seven/eight months ago I faced a similar situation to you,coming up 68yrs old I rarely needed conventional medicine.But here I was in absolute agony that paracetamol,ibuprofen etc, wouldn't touch.

I kicked against steroids,berated doctors for dishing them out so easily and didn't believe that they are the only answer to this terrible disease.

I took what I now call the idiots route,reluctantly decided to take them but believed that I knew better than my G.P. and others.Thankfully I arrived here and learnt very quickly.

I have no doubt others will be along who will guide you so stick around.Kind regards.Mike.

[Constance13]

Morning! Please tell us a little about yourself (write it on your profile). It is difficult for us to give advice if we don't know your blood markers and background.

To have "slight pain" only is most unusual. Most of us, even at first, are in such agony we can't even get out of bed, off the toilet, etc. Steroids are the only thing that makes our lives bare able.

[SnazzyD]

Welcome. Did they rule out Fibromyalgia?

[Nanny71 in reply to SnazzyD]

Hi It’s never been mentioned. Had blood test and Doctor decided it was Pmr

[SnazzyD in reply to Nanny71]

I know we go on a lot about people not getting a PMR diagnosis but I think I’d want a little more from the doc before starting Pred. Sometimes there is merit in a week or two’s trial of Pred but if you are not too troubled I’d want a little more to go on. What numbers on which tests? Is the pain getting worse over time? Are you ok for the rest of the day once it has gone in the morning? Any pain elsewhere? Do you have any other conditions that may cause pain? How long ago did this start? Have you had a vitamin D test? Low levels can cause musculoskeletal discomfort.

[Nanny71 in reply to SnazzyD]

Hi

ESR elevated . Crp normal. No other tests. Consultation over telephone because of lockdown. Had this for a few weeks but doesn’t seem to be as debilitating as most speak of

[SnazzyD in reply to Nanny71]

Do you know the number for the ESR. Have you had any illnesses, even mild? Can you describe in detail what it feels like and how you are limited by it? Has it been the same throughout?

[Nanny71 in reply to SnazzyD]

Hi I don’t know the number of ESR sorry. Had a really bad virus but that was Christmas. Muscles ache on waking but not for long. No trouble with dressing housework etc. Slight aches over the day but not that painful. Nothing I would need painkillers for.Sometimes nothing at all

[PMRpro Ambassador in reply to Nanny71]

Which begs the question - why start a heavy duty drug like pred ...

[Nanny71 in reply to PMRpro]

Hi I haven’t yet.When I asked what would happen if I didn’t take it he said I might have a stroke . I don’t know f this is correct

[PMRpro Ambassador in reply to Nanny71]

I think that is a bit of a stretch if the diagnosis is PMR as opposed to GCA. If there were signs of GCA I would agree - but I think I would be seeking a second opinon first.

[Nanny71 in reply to PMRpro]

Hi only PMR mentioned. I will phone Doctors again Monday. I’m not going to. Take the steroids until I’m convinced. Thanks for your help

[PMRpro Ambassador]

On what grounds is the doctor saying this is PMR? What you describe could be a lot of things.

[Nanny71 in reply to PMRpro]

Hi Results of blood tests . One which was normal.

[PMRpro Ambassador in reply to Nanny71]

All sounds a bit sketchy to me!

[Nanny71]

Hi . It does me . Might need to get second opinion . Thanks for your reply.

[123-go]

What a predicament for you! You might ask your GP to refer you to a rheumatologist who will know much more about PMR. Your symptoms sound very mild but you need to make sure you need Prednisolone. Good luck.

[Nanny71 in reply to 123-go]

Hi Yes I think a rheumatologist is a good idea. Thanks

[123-go]

Do let us know how you get on.x