Muscle wastage

[T2305]

I was diagnosed with PMR in October 2018, but after two visits to a Rheumatology Dept, I was told my blood tested were normal, and to get off the steroids, I am now down to 2mg daily, going down to 1 mg on Tuesday 24 th December, but I am having a lot of discomfort in my shoulders, wrists, hands, knees, and ankles, I remember reading the you can have muscle wastage from taking steroids for a length of time, would this be why I am getting these pains ? I have been told by my GP that I have Osteoarthritis. And will the pains go when I am off steroids or about 4 weeks afterward.

[scats]

To get down to 1mg in just over a year is a very fast reduction. I have steroid induced myopathy in my thighs but that was after nearly 4 years of pred. I would suspect that your pain is more likely to be PMR rearing it's head again. Your blood markers would be low if you were on steroids, and for some of us they are never high. I am not an expert and can only advise on my own experiences. Hope you get this sorted.

[Blearyeyed]

If you have OA many aches, pains and stiffness can come with that.

If you are still on steroids you are still only heading towards recovery , your Adrenal function is still trying to get back to normal so you can have Muscle Fatigue as part of the Fatigue caused by that. Just think of the way your muscles and joints feel for a month after a few weeks if Flu , then think of the length of PMR these aches will happen a lot longer , upto 6 months to a year , although as you progress they may not happen all day or everyday and it will be determined in part by now bad your OA is.

Muscle weakness can happen on long term steroid use , partly because of change in Collagen Processing , partly because of reduced activity which reduces muscle Mass and Strength anyway.

Overtime , just like getting over an injury , with a gradual build up of exercise and activities , good nutrition containing lots of Protein and good hydration , that Muscle Mass can return , cushioning the joints more and helping to reduce the OA aches and pains.

But just like getting beyond PMR , a full recovery is won by the slow tortoise and not the speedy hare I am sad to say.

[DorsetLady PMRGCAuk volunteer]

Hi,

Couple of points -

Just because your bloods are normal, it doesn’t mean the PMR is gone - it might be, but more likely it means the inflammation caused by the underlying PMR is under control. No the same thing at all!

I would guess the aches are due to too little Pred rather than muscle wastage. If you’ve only had PMR for 2 years it’s still likely to be very much alive.

Can you remember what dose you were on before the aches returned? If so, that probably indicates the dose you NEED to be on.

You are not reducing relentlessly to zero, you are trying to find the dose you need - my opinion, you’ve gone past it! If you’re having symptoms, no point in reducing dose, they’ll only get worse.

As for Osteoarthritis - at such low levels the steroids aren’t relieving any pain, so if the pains are that, you’ll still have them whatever.

[SnazzyD]

Hello, I don’t want to be a killjoy but there are a few things that don’t add up. How anyone can say you are free of PMR while still on Pred, I don’t know, especially after such a quick reduction plan. Assuming you had no osteoarthritis before Pred, to get it in all those different places in a year is quite bad luck. The symptom pattern sounds suspiciously like PMR too. Also, why are they so afraid of a dose of Pred that is so low now and almost devoid of side effects?

From my own experience with just GCA, I found withdrawal quite an achey experience and more so when I had adrenal insufficiency. I also had quite some muscle wasting but it wasn’t so much painful as easily damaged by activity and then painful for a few days. I was punished for any poor posture especially the neck.

I also have ligament damage in my arms, wrists, pelvis and Achilles which also became very unhappy about pushing new activity. These have improved hugely since 5mg but the Achilles are still a big problem.

[PMRpro Ambassador]

All depends on whether it is or isn't PMR of course. Of course your blood markers were "normal" - you were on pred at the time. And anyway about 1 in 5 patients with PMR have blood markers that are not out of what is called the "normal range" - but that doesn't mean they aren't raised for you. Mine bumbled along at 16-18 during a major flare - "normal" they cried. But MY personal normal is low single figures.