PMR relapse?

[Salukimama]

I would be grateful for some advice! I was diagnosed with PMR end of 2022. I was put on 15 mg Prednisolone and started tapering around 2 months in. I stopped Pred December 23! Around 10 weeks ago started waking in early hours in bad pain chiefly in shoulders and hips but also shooting pains in limbs and sore wrists. Went to GP but all blood tests normal. Things got worse and was referred back to Rheumatology but they declined referral. GPs (plural) said can't be PMR as no raised inflammatory markers in blood tests. I have long standing diagnosis of fibromyalgia but was never like this. Was sent to A&E a about 3 weeks ago though with v. High pulse and fluctuating blood pressure (sitting and standing). Docs there were concerned that PMR might be an issue due to physical pain I was in. Back to GP and was suggested I try going on Pred to see if it helped. It has done so though still some arm/shoulder pain. Can walk much better and minimal pain at night. Really don't know what to do as hated being on steroids before (numerous side effects). But docs and literature I've read all states negative blood tests exclude PMR. Any advice would be very much appreciated.

[piglette]

Your choice is to take the steroids, which really are a wonder drug as far as PMR is concerned or suffer a lot of pain and leave yourself open to other problems too. Up to 20% of people with PMR do not have raised blood tests, which can confuse some doctors. What type of side effects are you getting, as there may be some way of helping improve the problem?

[Salukimama in reply to piglette]

Thank you. I was given to understand the raised esr/crp were prerequisites. Previously had a lot of side effects. Currently less though am having hot flushes, dizzy moments and slow thinking.

[PMRpro Ambassador in reply to Salukimama]

Raised ESR/CRP are prerequisites in the criteria for selecting patients for research to standardise the cohorts. They are not essential for diagnosis - different thing altogether.

[piglette in reply to Salukimama]

The hot flushes are probably caused by the steroids. They are horrid. In my case they did disappear as I reduced though. Also fuzzy headed.

[Salukimama in reply to piglette]

Thank you that's reassuring !

[piglette in reply to Salukimama]

In my case the hot flushes had definitely gone by 10mg.

[SnazzyD]

The bottom line is that Pred is working for you. If it was Fibro it wouldn’t help.

Here are three sources that say you can have PMR and normal inflammatory markers.

This is from the UK’s National Institute of Clinical Excellence guidelines -

“Raised inflammatory markers are supportive of a diagnosis of PMR, although if the clinical picture and response to steroids are typical, the diagnosis can be made with normal inflammatory markers.”

ncbi.nlm.nih.gov/pmc/articl...

journals.lww.com/md-journal...

What side effects troubled you last time? Usually people are started on steroids but offered no advice on how to deal with some of the side effects.

[Salukimama in reply to SnazzyD]

Thank you. Last time I felt woolly headed and dome pains in face and head. Also insomnia and anxiety.

[singingloud in reply to Salukimama]

I would take the woolly head over the pain. Take naps if needed. As you slowly reduce the other side effects you have will weaken.

[Salukimama in reply to SnazzyD]

Thank you. This is very helpful!

[DorsetLady PMRGCAuk volunteer]

But docs and literature I've read all states negative blood tests exclude PMR

Not true, various studies have shown that between 7 -20% of patients do not have raised markers.

What dose are you on-? And if it is PMR, then unfortunately only Pred will help, and as  SnazzyD has asked, what side effects… most can be mitigated, or at least well controlled? And a very quick taper previously makes it very likely that your PMR is still around…

[Salukimama in reply to DorsetLady]

Thank you and yes I did wonder if I was too eager to get off the steroids. Have listed side effects above but it felt bad at the time. I forgot to say my hair went really thin and I hated the way I looked. Am 70 next year. I felt suddenly very old!

[DorsetLady PMRGCAuk volunteer in reply to Salukimama]

Unfortunately, thinning hair is another common side effect, but most find it improves as you reduce Pred.

[PMRpro Ambassador]

Negative blood tests DO NOT exclude PMR - up to 20% of patients do not have levels that are outside the normal range but still have PMR. They may be raised for that patient - my normal ESR is low single figures but it ran at 16-18 for some weeks during a severe flare where I could hardly move.

This is a discussion of normal markers in PMR

ncbi.nlm.nih.gov/pmc/articl....

and there is more here

journals.lww.com/md-journal...

Actually, this sounds more a flare rather than a new event. Quite a few patients have experienced this: they have stopped pred and within a few months they start to experience the symptoms again so your timeline is about right. You stopped pred in December, by the end of March, 3 months, you felt the flare. The PMR is not entirely gone, the underlying autoimmune disorder that causes the symptoms is at a very low level, and a low dose of pred is enough to manage the inflammation created each day, even 1.2mg can be adequate. But zero pred is a step too far and the small amount of inflammation created each day slowly builds up over time, like a dripping tap fills a bucket if left, until there is enough for you to feel. PMR can last only a year but it is unusual - 1 in 5 get of pred in a year or less but have a higher likelihood of relapse.

And if there IS dispute this is still PMR which suggests the initial diagnosis may not have been correct, the rheumatologists SHOULD be showing an interest. They are the ones who criticise GP diagnoses and, as discussed in the links, there are several alternative diagnoses that could present in a similar way. All of them are rheumatological conditions which should be diagnosed and managed by specialists, not the GP.

[Salukimama in reply to PMRpro]

Thank you. This has given me a lot to think about and yes you are right re rheumatologist! It is so difficult with nhs at the moment. But I feel more empowered by the advice I've received so I will discuss with GP when I see him next week.

[Salukimama in reply to PMRpro]

Forgot to mention that when I was coming off the Pred and ultimately stopped I felt completely exhausted and unable to do even basic daily living activities without support.

[SnazzyD in reply to Salukimama]

That was likely because your adrenal glands couldn’t restart cortisol production and you were suffering from adrenal insufficiency. Until your one’s cortisol production comes back on line reliably, one can feel just as you describe. The risk is higher if you come off Pred too quickly.

[PMRpro Ambassador in reply to Salukimama]

As Snazzy says - that was adrenal insufficiency because you tapered off the pred too fast for your body systems to keep up with learning to produce enough of its natural corticosteroid to function. Which can be a quite risky strategy if you meet an emergency of any sort where extra cortisol is required - can be illness, injury, emotional or psychological problems.

[Salukimama in reply to PMRpro]

Yes now making sense if all this. Wish I'd been better informed. All this information is so valuable! Thank you again!