Can it still be PMR even if blood tests come back as normal?

thanks all - yes I will take your advice and slow down a bit. I do so hope you are right about the vit D! if that is the main problem then it would be easier. but i still don't get how it got so low given what you describe as normal levels - would have to have a vampire approach to sunlight to get so low I think!

Dunster

Look at the beginning of the Poly thread, there are two items PINNED. Go to the website and read the BSR Guidelines on the Diagnosis and Treatment of PMR.Also click on the Newsletters and read up on Vit D deficiency. You will see from the guidelines that Vit D deficiency is part of the diagnosis procedure.

And - late to the party again I'm afraid - but (to cover answers to both of you):

I was 52 when PMR first started but relatively mildly and had it for 5 years with no treatment before it went mad

I have NEVER had a raised ESR or CRP level

I have never been anaemic (I now live at an altitude of 850m which may have an effect and spent a lot of time here in the winter then - but I doubt it)

One in six patients with PMR have blood levels within the normal ranges quoted by the labs.

Normal blood values and unusual symptoms are more common in younger patients.

I have never lost weight with PMR, in fact in the first 5 years I put on weight steadily because of being unable to exercise properly

That is an extremely low vit D level and even if it isn't the cause of the muscle pain it won't be helping

That dose of vit D will take until kingdom come to raise your vit D level (have you done the recommended reading about vit D?). You need high dose injections.

Your vit D level is affected by several things: there is almost none in our diet in Europe, getting older impairs the process of making it in the skin, most people north of Turin in Italy don't get enough sun anyway, using sunscreens (even factor 8 ) reduces the production to about 5% of the maximum you can manage.

What you describe is a fairly dramatic response to pred! They look for a 70% response in symptoms within a couple of weeks to a trial dose of 15mg/day by mouth.

Steroid injections have not been shown to be an adequate way of treating PMR. The effect wears off after a few weeks at most and often PMR is diagnosed after an injection in a shoulder or hip because of suspected bursitis - which is also a part of PMR - and finding that other symptoms improve too. But even several injections won't achieve a lot according to the medical literature.

So on balance - I can't say I am particularly impressed by the knowledge on the part of GP or rheumy as described here. Download the Guidelines on diagnosis and treatment you will find on the recommended sites and hand them over to the doctors for their perusal and edification.

Oh yes - someone mentioned an "urgent referral". That merely means you might be seen sooner than the current 18 week limit on waiting times (unless, of course, that is another target removed by the current gubmint). It does NOT necessarily mean you will be seen soon.

And although this isn't meant to be scary: if you have PMR you are at a higher risk of developing GCA, another closely related vasculitis, and that can affect your eyes and cause blindness. About 1 in 6 patients with PMR develop GCA at some time, the rate is higher for patients not treated with steroids. If you get any funny visual symptoms, pain in your jaw when chewing or a really bad new headache - go to A&E and tell them everything. Once your sight is gone it is too late to treat it.

Hope I didn't forget anything

Eileen

Mr Moderator Sir!

I swear - this forum still has gremlins. I wrote "factor eight sunscreen" - I did NOT ask for a stupid face.

It adds faces for repeated question marks - I'd rather not if you don't mind.

And the post topics were not in order of latest post when I logged in today - what's with that????????

Thank you.

- I think I asked for this face :-)

Eileen

"I wrote "factor eight sunscreen" - I did NOT ask for a stupid face

That's made me chuckle as I'd just been wondering why you'd put a funny face! :D

Eileen

You've quoted "1 in 6 patients with PMR develop GCA at some time".

I'm wondering if you have any figures for t'other way around, please, ie how many patients with GCA develop PMR?

hello all

You were all right!!

feel tired and got some pains in shoulders and hips more so than had last week! But morning stiffness is really low if at all - however contacted rheumatology nurses who gave me another injection today . they intend to give me up to 3 ( one a week last one next week) to keep symptoms down and then I go back to see consultant. vit D script is now1000 twice a day. the bursitis one is interesting as consultant thought I had that - was original diagnosis from him. My right shoulder is aching off at moment!!

Glad you are getting some Vit D, I got 20,000 units twice a day for a month and then after three months a booster dose of 20,000 per day for five days.

Any reason for the injections and not tablets.?

Not at this stage as still not got a formal diagnosis . however have been doing some perusal of recent research - indicates this is becoming a more used treatment for suspected mild doses of pmr - but in essence got no idea yet. I am assuming that my responses and improvements ( as despite some relapse I am generally improved) since first injection may support the consultant to give me a diagnosis of some kind!! I don't know what kind of rheumatological diseases with such specific symptoms and response to steroids it could be - other than PMR.

Well have tried the concoction of meds that GP gave me and initially thought it was helping but today can feel it all building again especially around pelvic hip area and shoulder. GP has said if I don't have appt from rheumatology this week I am to contact her so hoping I won't have to wait to long. It has been really enlightening

to read about other experiences and will certainly give me ammunition when I see GP and rheumatologist

Thanks for all the advice and kind words and I will update when I know more

Hi Eileen,

Sorry for the delay in replying, I've been on leave.

Re the faces, yes, there are still problems which have been reported. It put the face in because the typed characters for that one is 8 bracket without a space 8) - just typed that there :D.

It is similar for 3 ? - ??? or 3 ! !!! which I just typed. There is another problem whereby if you try and insert a smiley in text you've already written it appears at the end of the text, I put one here but it appears here with the >. Some of them do not work at all

All of these issues have been reported.

I have edited your post above to put a space in.

Re the ordering of posts I never saw that as I was away but if you notice this or any other "bugs" can you send me a PM please. I'll ask if anything was happening that day that might've affected the ordering.

Thanks,

Alan

Hi have been back to GP today and results were back for vit D levels test results showed low result so commencing a 12wk course of supplements. GP chased rheumatology appt and should receive appt in next few

Days. Having good and bad days and so wanting to get to the bottom of all this as the pain is very

Debilitating and getting anxious about returning to work after the summer holidays and how I will manage

Guess I will just have to wait and see. Chin up to us all x

good luck hopefully the course of vit d will help