Does having low or no blood markers affect the PMR journey?

[Phoebenooby]

I had typical PMR symptoms for 8 long months…. came on overnight out of the blue. Lost about 12lbs in weight, couldn’t do my hair, crawled up the stairs, agony to roll over in bed, had to lift my legs up by my jeans to cross them…. But my 2 x blood tests were both normal. Does not showing the inflammation in your blood mean a different outcome? Longer, shorter or longer remission?

[piglette]

Up to around twenty per cent of people can have PMR symptoms but their blood markers stay normal, which can confuse some doctors. Your description if your PMR takes me back to that awful time when I did not dare to move in bed even due to the pain. The GP diagnosed it as a virus.

[HeronNS in reply to piglette]

That reminds of the time when I was fainting at work or having to lie down all the time, and when we called Student Health (we were working and living in a university) the doctor on duty said there was "a lot of that going around." Turned out my haemoglobin was so low I needed four units of blood.

[HeronNS]

In my case the doctor I had then said my markers were "normal for my age" which we now know is based on a misconception that inflammatory markers are expected to be higher as you age. As far as I know the findings at diagnosis don't say anything about eventual duration of PMR. In any event symptoms should always rule over any readings.

How are you now?

[Phoebenooby in reply to HeronNS]

Hi, thanks…I’m at 6.5mgs….now pre diabetic …. Thin hair….ultra thin skin…. pretty normal for the journey! but mostly out of pain 😊

[DorsetLady PMRGCAuk volunteer]

Unfortunately not… as said studies haves shown that between 7-20% of patients never have raised markers, but there is no evidence to show their PMR lifespan is any different.

[PMRpro Ambassador]

Don't think there is a general rule. Normal markers does tend to mean a long time before diagnosis as doctors claim not to know what the problem is. The primary difference between you and me was the weight feature - I gained weight because I couldn't move and exercise and craved carbs in the afternoon. One dose of pred - relief and no more carb craving!!

Those of us who have Long PMR seem to tend to have been younger at onset, delayed diagnosis and/or messed about by ignorant doctors and it goes on and on - or something does!!

On the other hand - my hair so thick I don't what to do with it at times but that is compounded by the waves/curls. My skin has improved no end except for my shins and they are a mess if the truth were told. Not prediabetic. At 7mg and tocilizumab after 15+ years of pred at much higher doses.

[Phoebenooby in reply to PMRpro]

I’m so sorry your journey has been so long… I had no markers and waited 8 months for steroids….I was 69 when it started. I’m pretty sure my mum had it about the same age, and don’t think it was a long term journey so fingers crossed xx

[Gimme in reply to PMRpro]

I've pondered on the "long PMR" thing, and as we have discussed before, I think my PMR started in my early 40s (circa 2002) and didn't get a diagnosis until Oct 2022. My inflammatory markers have never been raised, either before or after starting pred. Do you know if there is any indication that there could be an initial acute phase where the inflammatory markers are raised and then gradually drop, meaning that if you don't get prompt diagnosis then the blood tests can miss the stage where the markers raised? I dimly remember reading something like that, but can't remember where I saw it, which is annoying as I can't check whether it was from a reliable source. (Incidentally, I do think the lack of inflammatory markers are what set my grumpy rheumatologist off on telling me that I didn't have PMR. Thank goodness the GP is more enlightened).

[PMRpro Ambassador in reply to Gimme]

Don't know to be honest. Mine were never out of normal range which confused the GP (who was a bit thick anyway, it's OK, we were friends) but I do know that they ran about 16-18 when I was in hospital for something else but during a massive flare here which is well in normal range - but raised for me. It is well known that there are some patients who simply don't "mount the acute phase response" as they so delightfully express it. What is it about grumpy rheumies - do they think they rank alongside surgeons?

[Gimme in reply to PMRpro]

I definitely think my guy has a bit of a god complex going on. And subsequent conversations with two of the other GPs at the practice suggested to me that its not just the patients that he pees off, though they are far too professional to say as much, but the smirks at one of my comments were very telling. As I have commented before, I really do wonder how much experience some of the rheumatologists have with PMR, if only atypical patients are referred. The GPs seem to have a much better grasp of how the illness plays out and how absolutely shitty it is to live with it. Certainly my favoured GP seems to be both enlightened and compassionate; maybe someone in his family has it. And the recent conversation that we had in the group about patients moving on from grumpy rheumatologists at the earliest opportunity probably must have an impact on their experience. Unfortunately, that does mean that any misconceptions become self perpetuating.

[PMRpro Ambassador in reply to Gimme]

Exactly. My theory is that they choose rheumatology thinking it is a cushy number with no emergencies, nights/weekends on-call etc, I don't know if any hospitals in the UK do what is normal here - if you are qualified as a medical specialist, you take your turn on the ED rota. But then they discover the reality is that you can't cure your patients whatever condition they have and the medications aren't as straightforward as they thought. They know a fair bit about RA - but even that can be a bit depressing - and then they meet the lupus and PMR patients and they haven't a clue. No reliable markers, symptom management - and that dreadful drug group, CORTICOSTEROIDS, A few find it really interesting - but I think that must be the ones who were better at science and who like immunology and they are definitely a minority. And now - there is an overwhelming wave of rheumies who trained on the subcontinent, male and female, and they are very much the "I'm the expert" and dislike patients who want a say or who don't fit with their preconceived ideas of how it should all work. Obviously there are exceptions and I know a few, but they are also very much a minority.

GPs get all the rejects who can't cope with these grumpy rheumies and they see them all the way through and know how difficult PMR can be, needing pred much longer than the rheumies see since they sign them off after 2 years ...

[reefswimmer]

When I suffered with horrible pains in my wrists and hands during Covid, my doctor told me I had Tenosynovitis and prescribed painkillers which did nothing. Having had PMR before I suggested that it had returned but my blood tests apparently did not show this.

Desperate for some pain relief I used some old steroids I had left over and the pain went away. So I searched the internet and bought my own. I then made a private appointment with a rheumatologist who agreed my PMR had returned and wrote to my GP who then put me back on steroids.

I am sure that loads of you will say it is dangerous to buy drugs from the internet and it is obviously not the first course of action but when your GP doesn't help, sometimes self diagnosis is the only way. It took a year to get off the steroids then and all was fine until I did a lot of flower arranging at Christmas and the PMR came back in my wrists and hands again.

So back on the steroids I went and now down to 5mgs daily. Hoping to get off them by Christmas and then no more flower arranging or gardening for me!

The moral of this story is sometimes blood tests don't really show what is going on and in the world of PMR, until you've had it yourself, you really have no idea how it feels.

[PMRpro Ambassador in reply to reefswimmer]

Yes - we know that but it is regarded as rubbish by many doctors. Only a very few don;t have raised markers they say - I'd say it is a lot more than they think!!