Flare with normal blood inflammation levels ?

[Fridgeman]

Hello everyone,

Just after some advice please.

I began my PMR journey last February albeit unknowing what my condition was then, initially unable to get a correct diagnosis I was first prescribed Nefopam and Amitriptyline which had no effect to my symptoms, the Amitriptyline actually made me worse. After that I was referred to a first contact physiotherapist who gave me an exercise schedule which I was unable to do. Finally got to see my own GP who immediately had my blood tested for inflammation markers and initially diagnosed Ankylosing Spondylitis and prescribed Naproxen which once again had no effect, then I had a MRI scan which showed there was no evidence of AS. After many months got referred to a Rheumatologist who correctly diagnosed PMR and after starting on a initial dose of 15mg of Pred I was seemingly cured ( if only ) so after two weeks at 15mg and a further two weeks at 12.5mg I was instructed to taper to 10mg for one month and then taper 1 mg less per month to reach zero.

So after tapering down to 8mg I began to feel all the aches and pain re-emerging but was told by my Rheumy this was normal niggles and to carry on with taper schedule. Then my problems really began when I hit the 6mg mark as in all my prior diagnosis symptoms were 75% back along with a good dose of fatigue. I phoned the hospital rheumatology helpline and explained what had happened and was told to get a blood test which showed normal CRP/ESR levels. After speaking to my Rheumy he insisted I am not having a flare up and begrudgingly let me go back to 7mg of Pred for another month which currently has made no difference at all. In light of this I ask the question please can you have a flare up of PMR and have normal blood markers or is this to something to be expected as I taper down.

Sorry for the long post only I don’t know what to do for the best, up my dose myself to a point where I am pain free again or stick to the rheumatologist

Any support or advice are welcomed. Thank you.

[DorsetLady PMRGCAuk volunteer]

If you only had one blood test, then quite likely the results were normal… it can take time for them to catch up with the flare… and I bet if you’d had another one a week or so later you’d have noticed a difference. Which is why we always say - symptoms are the key!

So yes, you probably are having a flare, but at the level you are at the fatigue may well be down to adrenals struggling to get going again… so 2 things causing issues.

You are not reducing resetting zero - as your Rheumy seem to think, you are tapering to find the lowest dose that provides same relief as original dose did. And only2 weeks at initial dose and 12.5mg is not longe enough- no wonder your PMR is not under control. Think you need a Rheumy who understands PMR… doesn’t sound as if your current one has a scooby! 🤨

This post explain how to deal with a flare - but a maybe back to 7 or 8mg rather than 6mg…

healthunlocked.com/pmrgcauk...

… and this explains about adrenals;..

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I find it difficult to believe that a qualified rheumatologist thinks that PMR is cured by a short course of steroids! I really have to say this rheumy hasn't the slightest clue what PMR really is and how it works and you need a second opinion from someone who DOES. I'm also taken aback that a GP thought themself in a position to diagnose ankylosing spondylitis - even rheumies struggle without appropriate imaging.

I'm about to go to bed so haven't time to write what I need to - there is a lot in the FAQs about the true nature of PMR and I will have a go tomorrow. It is a chronic condition, not one you take a course of pred and then taper off, it can last at least 2 years and often longer and as long as the underlying disease process is active you need ENOUGH pred to manage the inflammation which causes the symptoms. In some patients the ESR and CRP don't rise again even during a flare when they are still on some pred and so the symptoms always trump lab results. But some doctors think they can rely on figures rather than the patient in front of them.

Where in the UK are you? Maybe we can recommend someone who does know - is a single private consultation an option for you?

[Fridgeman in reply to PMRpro]

Many thanks for prompt response , yes having a second opinion is exactly what I need. If you could recommend someone based in the West Midlands, although I don’t mind travelling if it helps me get the right treatment.

[PMRpro Ambassador in reply to Fridgeman]

Our really dependable go-to is Rod Hughes in Chertsey because he is sensible, listens, knows what he is talking about when it comes to PMR and really is good. Unfortunately most who fulfil that are NHS and don't do private (usually because they do research).

If you post separately asking for recommendations in the WM, saying how far you would travel, someone may have a good recommendation. No point jumping from the frying pan into the fire.

[RevSmallwood]

Hello, welcome to Rhumy rogues world. In 8 years and 4 rhumies they've all been hopeless ( west mids too). It's a thankless job because they've no idea the cause, so no affective one fits all treatment and certainly no cure as yet.I've tried all the 'alternative ' medication to no joy, so resigned to steroids at 7mg , much to rhumy annoyance. He took me off his list in protest. Sad to say, private is a possible option, if you're able.

[Fridgeman in reply to RevSmallwood]

I think I have definitely come to the realisation that I need to get a second opinion which will have to be through the private route. I am so grateful I found this forum with all the knowledge and sound advise available without which I would probably just be stumbling along continuing in pain whilst sticking to my current Rheumy 12 month plan to zero pred.

I do find it quite astonishing given the amount of patients that suffer with PMR that it is so poorly mis managed by what seems to be the majority of NHS rheumatologists, who just seem to think that the goal is to get patients off Pred in quickest time. I am currently now taking the advice that DorestLady kindly provided in her link ‘How to deal with a flare’.

[PMRpro Ambassador in reply to Fridgeman]

The trouble is, there is some poor literature out there that makes them believe that PMR lasts 18 months to 2 years. A small group of PMR experts are working on it - but they are a new generation and not popular with adherents to the old concepts who do their best to shout them down. We patients must support them as much as we can.