New symptoms

[Janann25]

When I was diagnosed with PMR just over four years ago, my symptoms were pain and stiffness in my neck, shoulders and arms, together with flu-like symptoms. My blood test showed CRP of 127 and I was then prescribed 15mg Pred. This was increased to 40mg, as a result of severe headaches and double vision. I have eventually tapered to four and a half mg Pred and, until the last few days, have felt relatively well - apart from occasional quite severe fatigue. However, this last week, I have been experiencing pain in the muscles of my arms BUT without any lack of mobility - originally, I was barely able to move my arms. I’m only mildly aware of this during the day but, during the night, the pain and feelings of restlessness are so bad, I don’t know how to get comfortable. In fact, my Fitbit showed this morning that I’d not even had two hours of sleep.

I’m not sure whether this is part of PMR and whether I should increase my dose - paracetamol doesn’t help. I’d be grateful for any advice as I’m now really worried about what’s happening.

[Bridge31]

I’ve started similar feelings but only in my right thigh. Kept me awake last night. I’m currently on 4.5mg and have had PMR for just over 2 years.

[Kendrew in reply to Bridge31]

Hi there. Others with more knowledge on this will be along, but could be your adrenals trying to get going again. Anywhere from 10mg down to 3mg (but usually from about 7mg and less) the adrenals have to start waking up again to start producing the shortfall of cortisol that the lower doses of steroids now no longer provide. During this time, you may experience a few symptoms...I understand that extra fatigue and aches and pains can be some of them.

[SnazzyD]

No sleep is just the worst. My first question is what have you been doing recently? How’s your neck? Do you have full range of movement of that?

[Janann25 in reply to SnazzyD]

I never have full movement in my neck because I injured my spine badly many years ago! No, the strange thing is that my pain is no worse than usual when I’m moving, it’s a pain/tension deep in my muscles when I’m still. Very weird and something that I’ve never had before. And of course it means that I can’t sleep and allows me to worry about it. I don’t understand it.

[PMRpro Ambassador]

At that dose my suspicion would be adrenal insufficiency with the adrenal glands lagging behind the need to produce cortisol again to top up the falling dose of pred. Were you OK at 5mg? How long were you at 5mg before dropping again?

[Janann25 in reply to PMRpro]

Difficult to remember exact dates. I remember it took me a couple of months to reduce to 5mg and it’s taken me a couple of months to get to four and a half. I’ve only been on four and a half for a couple of weeks so don’t plan on reducing any further until I feel a lot better.

Just wondering whether to increase - but by how much?

[PMRpro Ambassador in reply to Janann25]

I would suggest staying a bit longer at each dose before going on to the next. One very good PMR doctor likes to keep patients at 5mg for anything up to 9 months which allows the body to catch up. 5mg is low enough to stimulate the body to produce its own corticosteroid, cortisol, but is generally enough to allow the patient to feel pretty good day to day. Getting the feedback set up running smoothly, albeit at a low level, is a good basis for the rest of the reduction. And it all takes time.

[Janann25 in reply to PMRpro]

Thank you. So would you suggest increasing, say to 7mg, to give me extra support for a few days, or go back to 5mg for several months? Thanks again.

[PMRpro Ambassador in reply to Janann25]

Depends how bad you feel - I'd try the 5mg - it may be enough. If not, I'd add 5mg for 3 days and then try 5mg. Just in case there is some inflammation that has built up, but it may just be taking a bit longer to work

[Janann25 in reply to PMRpro]

Well I’m feeling totally shattered and not at all well. I’ve not got a temperature nor any Covid symptoms so I’ve just taken an extra 5mg and will take 5mg before I go to the bed - my usual time to take my Pred. I’ll then take 10mg for the following two days and hope that does the trick. If this sorts it, I’ll stay on 5mg for several months - I haven’t felt this poorly since I was first diagnosed!!

[Janann25 in reply to PMRpro]

Quick update. Feel much better this morning! I’ll stay with 10mg for a couple of days, then go back to 5mg and stay there for several months before trying a VERY slow reduction to four and a half. As usual, your advice is invaluable.