Normal Bloods

[Carathedog]

Hi,

Can you have Polymyalgia and have normal blood test, showing no inflammation

[DorsetLady PMRGCAuk volunteer]

Yes - between 7-20% of people (depending which study you read on subject) don't have raised markers....so its symptoms, symptoms, symptoms and how you react to the initial pred that counts..

[Carathedog in reply to DorsetLady]

Thank you

[Joanbill13 in reply to DorsetLady]

How many times have I heard this ! I haven’t got PMR lol. Even OH believes it. “Doctor says your fine”. Makes me so miserable.

[piglette]

There are several people on this board who do not show inflammation on their blood tests. It can be a drawback as doctors do not necessarily realise there is a problem such as having PMR or GCA for example.

[PMRpro Ambassador]

Yes - seen in maybe a fifth of patients.

My CRP never rose out of normal range except one day when I had a severe a.fib episode which also raises it. ESR grumbled along at 16-18 for weeks during a bad flare - which is still within normal range but it is very raised for me, my normal ESR is low single figures.

[Carathedog in reply to PMRpro]

Yes, my figures are not raised, to the extent, doctor thought it might be sciatica!

[PMRpro Ambassador in reply to Carathedog]

Sciatica can be caused by myofascial pain syndrome (MPS) - and there is increasing evidence that it is part of PMR in many cases and the cause of some of the features decribed by some patients. In MPS the same inflammatory substances cause the problem but they are localised in the muscle fascia and trigger points while in PMR they are systemic, all through the body in the blood stream. I suspect that in MPS there is less likelihood of the markers being raised because the cause is "locked in" and doesn't reach the liver to trigger it to produce the proteins that cause the increase.

[Carathedog in reply to PMRpro]

Thank you, that’s interesting, will look it up

[LozzaSandstrom in reply to PMRpro]

That makes so much sense to me. I have had a bad back worn discs and severe sciatica for 30 + years, arthritis in my hips and back and yet the pain was worse - especially in my feet which after an x ray in January when I sprained my ankle, was told my foot was "very worn".I have constant sciatica and by February I seemed to hurt everywhere, made worse by going for exercise classes and stretching via the NHS.

My 15 blood tests came back clear and it was - the doctor told me - that a process of elimination meant that it was likely I had PMR. I have been doubting it - I felt it was a cop out and needed more bloods - but I have to say starting steroids has reduced my various aches and pains by 75% at least.

Thank you as always

[PMRpro Ambassador in reply to LozzaSandstrom]

If you are like me, then the pain will improve some ongoing - it was months before the hand/foot pain went altogether although I had a massive improvement generally literally within hours, under 6 hours in fact!

[LozzaSandstrom in reply to PMRpro]

Yes its only when you think back you remember how bad it was - I am on an every other day drop at the moment 12.5 one day 10 the next and my feet are already getting a little sorer but I am trying to persevere I will give it a week and see if it settles down. Its a lot lot better and no arm pain at all now which was the last place I got it before I went for blood tests - I have been accepting this is "just arthritis" and was told by the doctors that some people cope with pain better than others which I found incredibly insulting and unhelpful!

[PMRpro Ambassador in reply to LozzaSandstrom]

To which one wants to reply "I'd like to see how YOU cope with this!"

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

If you have plain uncoated tablets you could try cutting 2.5mg in half and having 11.25mg each day rather than 10&12.5mg alternate days.

Might sound pedantic, but not a fan of alternate days (unless part of tapering plan when it can’t be helped) -think the body gets confused if you do one up/one down for an extended period…say 3-4 weeks.

Just personal opinion..

Either that, or if you are beginning to have twinges you may still need 12.5mg…

[LozzaSandstrom in reply to DorsetLady]

Yes I am not sure - the 2.5 are black which is a new one on me! I did it that was going from 15 to 12.5 - I think they are coated? I am desperate to get off these damned things, I am struggling with weight gain although I have drastically reduced carbs and I know the inflammation must still be there if I have pain - swimming every other day too - desperately trying to balance it but you know how it is - quality of life comes first - although I hate the round face... and my hair is thin already - I feel between a rock and a hard place - not sounding sorry for myself I hope I am grateful for how well I feel to be honest!

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

If they are coloured then they are gastro resistant - so can’t be cut -so that’s a no, no..which is a pity.

Any chance you can request 1mg tablets -saying you are having problems reducing 2.5mg a time….

I know it’s in the “official “guidelines, but that doesn’t mean everyone can do it.

It is very difficult to balance all the things you need to, but if you are still in pain, the illness is not properly controlled-and that is NOT the aim of the game!

As for being told “some people cope with pain better than others”.., is a crass remark - a good doctor should be trying to reduce your pain…if not to zero than as near as dammit!

Everything will get better -but being as pain free as possible is paramount to QOL.

[LozzaSandstrom in reply to DorsetLady]

Yes thank you very much - I did tell her that the 2.5 reduction on her guidelines was considered out of sync now and that the forum I am in has been super helpful and that anything over 10% is considered a little steep. The trouble is its a different person every time, this one is now on maternity leave and I am speaking to my original and best doctor in 3 weeks so I will definitely be asking for 1mgs then - thanks so. much as always for your help and advice, its always very much appreciated.

[PMRpro Ambassador in reply to LozzaSandstrom]

Black???? Officially dark brown is the listed colour for 2.5mg e/c pred. Are all your tablets e/c (gastro resistant)?

It isn't the inflammation still being there that is the problem - it is the chronic, ongoing nature of the underlying autoimmune cause of the inflammation which adds new inflammation every day - and the pred is the mop cleaning up the overflow, not the washer that repairs the faulty tap. Which doesn't yet exist.

[LozzaSandstrom in reply to PMRpro]

Black/ dark brown - tomato tomato . I have no idea - I have been on lanzaprozol for many years due to chronic indigestion so guessing thats why they went that way.

I have read on here that if you drop too quickly its because the inflammation hasn't been dealt with. Once again I stand corrected.

[Joanbill13 in reply to LozzaSandstrom]

Soo true

[Abbey17]

Yes I’ve only had one test with slightly raised markers. All rest have been normal.

[orangemax in reply to Abbey17]

Same here!! Those were the tests that got me diagnosed. After that - Nada!!

[Pawscat11]

Yes definitely. I have only had raised markers once in 3 years and they were still in the norm.

[Tiggy70]

My markers have always been in the normal range except the ones from my initial diagnosis. They were normal even when I went through a bad flare. It does make it much more difficult to convince your doctors that you are not ready to reduce your Prednisolone.

[Carathedog in reply to Tiggy70]

Thanks, yes I’m going through a bad flare, markers are normal