Blood tests

[Daffodilia]

I only had one blood test for PMR at the start - gp seems to say no point in checking when on pred as will be ok as I feel ok - why do so many people on forum seem to have them regularly and how do they know the levels (do they just ask gp levels and for tests?)

[DorsetLady PMRGCAuk volunteer]

At the beginning of my GCA (apart from the first fortnight when I had them about every 3 days because of sight loss in one eye and potential loss of the other ) I had them done every month.

They were used more as a monitoring/backup procedure - my tapering was based on symptoms - or rather lack of them - and each month when I saw GP we’d decide the way forward. She was very “new’ to GCA..and as had missed diagnosis was ultra careful.

As I got lower, I still had tests every 3 months or so - really more for my interest than anything else.

As we’re always saying, symptoms are the key, and not everyone has raised blood markers anyway, or the readings may to due to something else.....and even if you do, they are apt to lag behind symptoms.

If you want them, just discuss with GP who’ll have to sanction them (cost money of course) - then you should be able to ring and ask for them to be done. If your surgery is geared up with patient access or another online system, you can access results yourself.

[SheffieldJane]

Arguably the blood test results do not tell us much whilst the inflammation is being controlled by Pred. Other infections, particularly chest infections can make CRP levels shoot up. Symptoms tell us far more about the state of our health with these conditions. It is a good question. I can imagine that if you were on a low PMR dose of Pred with suspected GCA, then blood test results may provide useful extra information.

The first blood test you had would be an indicator of disease activity in about 80% of sufferers I believe. I have blood tests every few months when I see my Rheumatologist. Sometimes these rule out other conditions. I don’t tend to ask about my CRP levels.

[scats]

I have PMR. I've never had regular blood tests, but do get one when I go to the GP for something else. I know my results because I have registered to see test results on line. I also make appointments this way. If your surgery doesn't do this you should be able to ask for your results.

[PMRpro Ambassador]

They should be OK when you are on enough pred - hats off to your GP for knowing that at least! Symptoms always trump blood markers which are very non-specific anyway, they show inflammation - but not where that inflammation is. If you have symptoms then it makes sense to check the levels, if they are raised in a one-off situation without any symptoms you check them a week or so later to see if there is a trend but you don't raise the pred until you see there is.

And that would be a reason to have them done every few months while you are actively reducing - your symptoms might be good but checking the blood might show they are edging up, a point or so at a time. Which would suggest the current dose is just slightly too low to keep them stable.

I don't have them done - they rarely have gone out of "normal range" in the past although we now know that 18 is very raised for me as 4 is "my" personal normal.

[tangocharlie]

I'm puzzled now by people saying there's no point doing regular bloods, as my rheumatologist has suggested monthly ESR and CRP tests to see if we are controlling inflammation?

[PMRpro Ambassador in reply to tangocharlie]

Depends on the person - but it also depends a bit on what sort of performance it is to get monthly bloods done. If you have to wait weeks for a nurse appointment and can't make them in advance it's more trouble than worth since all sorts of things can affect them. Symptoms are king.

[piglette]

I have regular blood checks. A complete waste of time. My CRP and ESR is very high and as the doctors don’t know why they may do a few other tests, then find nothing, then shrug and I carry on as normal. I think the blood tests make them feel they are doing something and looking after us.

[tangocharlie in reply to piglette]

I feel at least it's proving I've got 'something going on' which warrants me asking for investigations. Without that I'd have been shrugged off with a diagnosis of fibromyalgia.

[piglette in reply to tangocharlie]

That is true. I assume I have PMR as the pred works!! I noticed they had updated my on-line records saying I have chronic kidney disease stage 3, no one told me. When I asked, the GP just shrugged.

[tangocharlie in reply to piglette]

Follow it up, find out where that's come from. I had a totally wrong letter once that must have been meant for somebody else, listing all the chronic conditions I supposedly had, which I didn't. I rang the Consultant's Secretary who eventually said there had been a mistake, but it's impossible for me to get the wrong letter removed from my electronic medical file!

[piglette in reply to tangocharlie]

I have checked my blood tests on-line and it is correct.

[tangocharlie in reply to piglette]

Still warrants some kind of explanation doesn't it? If it's come out of the blue?

[piglette in reply to tangocharlie]

I asked my GP face to face and he just said that your kidneys are not so good as you get older and shrugged.

[TheMoaningViolet]

Hi Daffodilia, I am looked after by a rheumatologist (though I have made an appointment with a GP in order to have her as my GP ally). I was diagnosed relatively recently and referred to a rheumatologist as I was a bit young (except not really) for PMR.

She is seeing me every 4-5 weeks and she has a standing order at the hospital for blood tests which I am to have tested in time to have them ready to review at our appointment. She is not only checking my inflammatory markers, but also my FBC (Full Blood Count) with differential, liver, renal and bone profile. I guess she is not only checking whether inflammation is under control, but also what steroids may be doing to my body. Needless to say I find this reassuring.

I think NICE guidelines recommend periodic testing, but you would get better advice on that from the more experienced people here or from looking them up yourself.

I think you should ask for whatever is most likely to support you on your journey.

[Marijo1951]

I have blood tests every month, but it's to monitor any effects of Methotrexate. So far my liver and kidney functions are okay.

[Orpheus82]

I self manage my PMR. Have enlightened GP’s in my practice who periodically give me a wadge of blood forms so I can have one when I like. Initially I did this every 2-3 months but haven’t bothered for past 6 months as I find my symptoms a better indicator of when to drop pred dose.