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[Lucky88]

New on this. Blown away by the numbers of people on it! Does anyone know what specific blood tests are necessary to confirm a suspected case of poly?

[SheffieldJane]

Hi Lucky the tests they use are are CRP and ESR. In laymans language they are looking for evidence of inflammation. Neither is definitive and indeed you can have PMR without any indicators in your blood as people have evidenced on here.

Your response to Prednisalone is the real test. If you get the " miracle" ie better, within days if not hours then you have PMR.

[Lucky88 in reply to SheffieldJane]

Thanks for the replies. I had the onset of pain late last year and for 6 months had excruciating shoulder, wrist, hand, hip and knee pains that disallowed sleep for more than an hour at a time and required huge efforts (especially for the first couple of hours each day) to move. A couple of other issues clouded the issue somewhat and after 6 months I was nowhere near getting a diagnosis, let alone any "cure". So I went private and paid a consultant who immediately diagnosed PMR and put me on Prednisalone with great results. Last week I even played 9 holes of golf again!

Now I begin to find out that many others have this problem and to learn that there are still many pitfalls to avoid in future (in the meantime I celebrate every day as if it was Christmas!).

What I find annoying is that the consultant was aware of my "pay own cost" and kept his costs down to 2 quick sessions. He also ordered a blood test to confirm his diagnosis and this turned out to be a very comprehensive effort that cost over £600 (far more that the consultant costs). I am challenging this clinic on the point that the bulk of the tests were not required to confirm PMR.

[PMRpro Ambassador in reply to Lucky88]

But they were required to rule out the other options. It might have been kinder to get you to ask the GP for at least some of them...

[Lucky88 in reply to PMRpro]

The private doctor was very supportive of me financially and we really got on very well. He wrote to my GP with his findings and advised that I should have an x-ray and a stomach ultrasound through NHS rather than add it on to the private hospital bill. I am sure he ticked only 4 boxes on the blood test request form to confirm his diagnosis of my (apparently) classic symptoms, again stating "no need to look further than necessary" . . . . I can't help but feel the lab people doing the testing just ran a full spectrum.

They have reduced my bill by £53.50 for one test, however they will not confirm that my doctor specifically asked for all these tests and that all are relevant to the possibilities of my symptoms. Hmmm.

Ah well, I will crusade on for a while and see . . . then cough up I guess.

[PMRpro Ambassador in reply to Lucky88]

We pay for all our blood tests here where I live, whether it is the full cost I have no idea, and it doesn't matter who requests it. Everything done personally by the GP or as an inpatient is free anyway. There is a co-pay for hospital appointments although some are exempt for chronic illnesses that have a code - needless to say PMR doesn't have one! But from 65 everything is free for people up to a specified income - and it is linked to the Tax Office computer so it comes up automatically. That was a nice surprise for OH, and I'm 65 soon too

[Lucky88 in reply to PMRpro]

Good thought train. We get so much free on NHS (well, not paid for directly case by case) that I guess the occasional invoice should be tolerated, even at 69.

[piglette in reply to Lucky88]

Hi Lucky88

I went privately in the end too as I kept being told I had a virus. I think I paid over £400 for blood tests and £250 for the consultant. In fact I think I should have had other blood tests as well in hindsight. You will need regular blood tests beside the CRP and ESR in the future, e.g. Glucose, U&E, Full blood test, but probably not so often. You should also be getting regular eye tests and ask your doctor for a Dexascan. In addition you should take vitamin D with calcium which your doctor may prescribe for you. It may be worth having a vitamin D blood test. I may be telling you things you already know, so ignore me if that is the case!

[Lucky88 in reply to piglette]

Piglette, merci, I will take all advice I can get, being new to this problem. I am used to being able-bodied and active in various sports despite knocking on 70 and this last 9 months has made me sit up and think big time. Feeling so much better as a result of these tabs, I have almost reverted to "normal" and I should take notice of the tips on this forum. My vision is surely a bit blurry, I have the vitamin D and Calcium bases covered and will meet with my GP to chat about the other aspects you mention . . . news to me!

Lastly (and not a frivolous question), what's the word on a few units of alcohol with this lot? The last 8 or 9 months have been virtually dry and I do like a few toots to go with the rugby.

[PMRpro Ambassador in reply to Lucky88]

It hasn't killed me yet...

[1Purplecrow in reply to PMRpro]

Nor me😜!!! A G&T makes for a lovely end to a summer day! Regards, Jerri

[Lucky88 in reply to 1Purplecrow]

Jerri, G&T it is this eve. Gan bei (as they say in Shanghai)

[piglette in reply to Lucky88]

Hi Luck88

As red wine is anti inflammatory I have decided it is OK. I do not like beer but I am sure the hops will do you good!

[Lucky88 in reply to piglette]

I had a good feeling about this forum. Between you and PMRpro my intuition is proved correct. Merlot here I come, Heineken waits until the Lions game and the Glenlivet will see Friday out.

[piglette in reply to Lucky88]

Someone after my own heart!

[camerashy in reply to Lucky88]

Hi Lucky88

i have a very low tolerance of alcohol {1 glass of wine} but since I have been on the alcohol...I can now tolerate 2!!!!

Not a good side effect but hey!! Not sure what the official line is especially as among other things just been diagnosed with auto hepatitis

[Lucky88 in reply to camerashy]

Life without little treats is simply too bland. I reckon 2 is better than 1! Enjoy.

[PMRpro Ambassador]

There are no blood tests which can "confirm" you have PMR.

It is a clinical diagnosis, made by the doctor on the basis of the symptoms, together with supporting evidence of blood tests. ESR (the rate at which red blood cells settle to the bottom of a tube) and CRP (a protein secreted by the liver in response to inflammation) are the two tests usually done but they are both VERY non-specific and can be increased in a range of inflammatory illnesses as well as being normal in up to 1 in 5 patients with PMR.

The response to a moderate dose of corticosteroids (15-20 mg prednisolone) has been considered to add to confirming the diagnosis. It was thought that only PMR would respond so dramatically but that is disputed nowadays. However, if your symptoms do respond very quickly to such a dose it certainly makes PMR more likely and rules out fibromyalgia for example.

[HeronNS in reply to PMRpro]

Hi PMRpro. Just curious, what are the other conditions they are now thinking may respond as well as PMR to low dose pred? Is it the same as for PMR, just a symptom reliever for a chronic condition?

[PMRpro Ambassador in reply to HeronNS]

Early stages of other inflammatory arthritides will also respond some to pred - what they are saying is that response to pred is not 100% confirmation of PMR and to keep an open mind.