Polymyalgia rheumatica

[magslg]

A happy and healthy new Year t o everyone. I haven't posted anything for last six months but would now like some advice.

I was originally on 15ms prednisolone and gradually reduced to 5mgs over the course of over a year. I very slowly reduced to 6mgs but since then I have considerably more pain - thighs, shoulders, upper arms, feel very tired and sleep very badly at night.

As well as prednisolone, the rheumatologist after much thought, prescribed me Hydroxychloroquinewhich I have been taking since 25th October. I was told by him that it would take about two months to have an affect but so far nothing.

I feel rather desperate living with daily pain and wonder what medication you advise - already take paracetamol 6 to 8 tablets daily. So difficult seeing a GP

Thanks for any suggestions.

[piglette]

I would say that you are on too low a dose. You could try increasing by 5mg for a week and see if that hits the PMR on the head, then drop down to the dose where you were last OK, say 6mg??

[magslg in reply to piglette]

Thank you piglette for your quick response.

[PMRpro Ambassador]

You are never reducing relentlessly to zero - you are tapering to find the lowest effective dose, the lowest dose that woeks as well as the starting dose did. You have overshot. It doesn't matter how slowly you taper - you will not get past that lowest dose barrier. 6mg may have been "your" dose but once you are lower than that, the daily shedding of the inflammatory substances creates inflammation that isn;t mopped up entirely by the slightly too low dose of pred. Over time it mounts up, as a dripping tap fills a bucket, until it overflows and you experience symptoms again.

Hydroxychloroquine may work in a few and in other disorders as a steroid sparer but it doesn't have much of a record in PMR. There is one rather dodgy paper claiming it is a miraculous approach. But it hasn;t been replicated. We do have a couple of people on the forum it works for but others got nothing from it. You are at too low a dose of pred and probably the only answer is to go back to a higher dose, get settled down and try again. None of the so-called steroid sparers are brilliant, methotrexate is the most common and for a small cohort of patients it works brilliantly - but not for the majority. And it has its own adverse effects which can be horrid.

A mg or two of pred instead of what is actually a rather risky dose ofparacetamol long term would be far more to the point. Paracetamol does nothing except stress your liver - it doesn't work for PMR pain. NSAIDs are marginally better but also not good long term at the sort of dose you need. Both paracetamol and ibuprofen are bad for heart and kidneys.

Show this to your doctor

ard.bmj.com/content/83/1/48

It is from one of the leading PMR specialists in the world - you treat to achieve remission, just like other rheumatological disorders, And you are currently NOT in remission.

[magslg in reply to PMRpro]

Thank you for your very helpful advice and also the article from the BMJ which I have just finished reading. I kept on having to reread paragraphs!

I have an appointment with a temporary GP that has now been rescheduledto the 1st week February. I will take along the article to the appointment and see what he has to say.

I

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[suzy1959]

I would be very interested to hear how you get on as my Rheumy is considering prescribing Hydroxychloroquine for me.

[magslg in reply to suzy1959]

I have been on Hydroxychloroquine for just over 2 months now. My consultant told me that it might take between 2-3 months to show any difference. I haven't noticed a difference at all as yet. I amdue to see him again in four weeks time.

The drug ia DMARD - it is not a painkiller as such but reduces the inflammation caused by polymyalgia so you can have less pain. I hope it helps you.

[magslg in reply to suzy1959]

I have been on Hydroxycholoroquine for just over two months. I can't say it has made any difference to me. My consultant did say it could take between two and three months to show improvements

[DorsetLady PMRGCAuk volunteer]

As already mentioned, undoubtedly too fast a reduction - and now adrenals are struggling so adding in extras.

A few links to look at - first for dealing with a flare - to get things back under control., second re adrenals, and finally slower tapers which will help both of the above — so get a cuppa and have a read -

A.

healthunlocked.com/pmrgcauk...

B.

healthunlocked.com/pmrgcauk...

C. Suggest DSNS or my Slow Taper

healthunlocked.com/pmrgcauk...

[magslg in reply to DorsetLady]

Thank you very much for the articles which I will go over again tomorrow. Brain fog!

[DorsetLady PMRGCAuk volunteer in reply to magslg]

It is a lot to take in all at once - brain fog or not😊

[waltztherapy in reply to DorsetLady]

Thank goodness for the experienced, eloquent, and wonderfully helpful advisors on this forum! They offer speedy advice and hope. X

[Hopeful424]

I agree with PMRpro. I would go back up to 6 or 6.5 and see the results. My rheumatologist told me today that I would have to be at 7mgs for a period of time to experience any adrenal insufficiency. So that appears to be a safe place to see if the pain subsides some. Hope you get it back under control.

[Mlangston]

Hello there, I've read through your replies and don't think I have anything really useful to add. Except I have no experience of the new drug you are taking. Also I'm afraid you are probably in this situation for the long term. I had PMR for 6 years and rollercoasted with prednisolone doses all that time, finally being able to come off it altogether after the minutest of reductions in daily doses in the final 12 months. The good news is that I have now been in remission for just over 7 years so there is hope for you, you just need plenty of patience!

[Johnnox]

Dear Magslg!

I've been on this medication for about 8 years, ranging from 25 to 1 mg per day.

Lately my pain has come back somewhat (!!!) and the blood markers for PMR are on the rise. My GP advised that I take 25mg/20mg/15mg/10mg/7.5mg reducing weekly and then to 5mg for the next monthly blood check.

Current pain 5 to 10/10 as the day goes. I am prescribed oxycodone 5mg as needed to live with the pain. It works.

But, I also have 7 crush fractures in the spinal column somewhat due to pred's effect on weaking the bones. Oh joy!!

Please, this is just my experience. I would never advise you what to do as I don't have that competency. Wishing you well!

JohnnoX.

[PMRpro Ambassador in reply to Johnnox]

If oxycodone works I'd suspect the pain isn't due to PMR. If youve had PMR for 8 years it sounds as if you may have the more chronic version which rumbles along, up and down over time.

We would say you GP is on the right track but maybe a bit OTT and you might well find just the 10/7,5mg steps are enough - our flares protocol is to add 5mg to the dose where you flared for up to 10-14 days and then back to the dose above where you flared.

[Johnnox in reply to PMRpro]

Dear PMRpro,

Thank you - very interesting! Chronic fits and the combination of maladies crowding into this space which also includes myalgia encephalomyelitis (fancy words for chronic fatigue syndrome).

Headlining symptoms are pain, brain fog, extreme fatigue exacerbated by stress, both physical and psychological. Bit like a club sandwich of barely manageable effects with no end.

Bitter - NO/depressed - No/getting tougher - definitely yes!

Note your OTT - will be more aware next time.

JohnnoX.

[PMRpro Ambassador in reply to Johnnox]

I had ME many years ago - when it was still yuppy flu!!! It went but there are a few of us on the forum who have a similar history - and suspect there may well be a link.

[Johnnox in reply to PMRpro]

How interesting and exciting.

Thank you for your reply! Comforting that one is not alone in this!