PMR - Tales of the Unexpected

[7DaysinMay]

I’d been suffering with what I thought was a severe PMR flare for weeks and weeks (very stiff leg muscles and sharp cramps especially in the thighs).

I was of 5mg Prednisolone daily and was hoping as with past incidents it would settle down and things would return to normal. It didn’t so I eventually arranged a tele call with my GP. I proffered to him that I felt it might be best to reset back to day 1 following an initial diagnosis of PMR. In other words go back up to 15mg Prednisolone get the inflammation under control and taper back down. He agreed to this I think because I wanted to try it but arranged before starting the new dose a blood test to baseline things.

The blood test was done on 30 April and I upped to 15mg the next day. At this point I was expecting almost instant relief but it didn’t happen and as we stand today 14 May the symptoms are just as bad if not worse than before the dose was increased.

The blood results from the 30 April have now come through showing CRP 4 mg/L and ESR 2 mm/h. Am I right in thinking that these results show no significant inflammation markers? If that is indeed the case and combined with the fact that the increased Prednisolone has had no restorative affect whatsoever then something unexpected is going on? I’m wondering perhaps Statin Induced Myalgia as I’ve been on 80mg Atorvastatin for years or even Prednisolone itself. Has anyone else had a similar experience? I have another GP call booked for 21 May.

[Nightingales]

Hi, you have probably thought of this but stiff muscles and cramps immediately made me think of a vitamin or mineral deficiency such as potassium, or magnesium. Have you had blood tests to look at blood chemistry?

[DorsetLady PMRGCAuk volunteer]

Actually with a flare [although doesn’t sound as if it was] you don't need to go back to square one. Usual advice is to add 5mg for a week or two, mop up the built up inflammation and then drop back down to just above dose that was the issue.

Which you can just about do as you've been on 15mg for 14 days now, any longer and youll need to go slower.

Blood tests do very often lag behind symptoms, so I wouldn't get too hung up on them... but the fact you don't generally feel any better suggests it's not PMR. or not totally.

May be the statins, but if muscles have only just started to ache, that's a but odd... bit more investigation required.

[7DaysinMay in reply to DorsetLady]

Thanks for the response. I'll keep progress on the investigations updated on here so others can see what follows.

[PMRpro Ambassador in reply to DorsetLady]

Statin myalgia can appear anytime, not just at the start - makes it far less easy to identify of course. Many adverse effects of the stuff we are given can be delayed.

[SanG55]

This sounds very similar to what I was feeling and I upped my pred dose by 5mg, which made no difference. Eventually got a face to face with GP, blood tests and an X-ray on a lump and osteoarthritis diagnosed. I don’t respond well to painkillers so am still in a lot of discomfort and unable to walk far and certainly not when carrying anything. I hope you don’t have the same. 7DaysinMay.

[paintpots]

Why not just stop taking the statins for a week and see how you feel. I was on simvastatin for 4 years before they caused me so much stiffness in my legs but cleared within days of ceasing the stations. I have been on ezitimibe for 5 years now with no problem.

[bde987]

Hi, long before l had PMR l had the same symptoms you describe and was back and forth to the gp trying to work out what was wrong. Eventually as a last gasp attempt to diagnose my problem the gp decided to test me for vit d deficiency and bingo we got the answer. I was really low in vit d and needed to go on a high dose supplement for 6 months. By month 2 l started to feel a big improvement. As far as l am aware gp,s don't routinely check for vit deficiencies so it may be worth asking your gp if this is a possibility in your case. Hope you feel a lot better soon

[PMRpro Ambassador in reply to bde987]

It is definitely worth doing - there have been others with the same problem. One hiccup can be that a single course of high dose vit D isn't enough to fill the black hole below the blood level and it needs checking again after a few months.

[bde987 in reply to PMRpro]

Totally agree. I became deficient again just 8 months after completing my first 6 month course. In Scotland they do not do routine repeat blood checks after you have completed the course to see if vit d levels are normal again

[PMRpro Ambassador in reply to bde987]

Which actually is crazy!! However - there is a remote option to check it yourself for about £30 last time I looked (update, £31 now) and done by an NHS lab.

vitamindtest.org.uk/?gad_so...

[bde987 in reply to PMRpro]

That's interesting to know. I will bear that in mind

[Songbird69]

Could possibly be B12 or vitamin D deficiency or both. Worth checking out.