Early Morning Aching

[Louisa1840]

Hello All You Lovely People!

I have had PMR for over 3 years and am tapering, using DSNS method, down to 6 and a half from 7 mgs pred. I also have inflammatory arthritis for which I take Meloxicam (7 mgs daily). I also take 10mgs Amitriptyline supposedly to help me sleep but "may also help with your pain" (Rheumy).

I live in Tasmania so it is winter here and I don't do so well in winter. I have a problem with my right hip (which sometimes goes to the left) I see a physio for this and do gentle exercises. I also do gentle aqua aerobics, short cycling trips and some Tai Chi. Presently my hip is so bad I waddle like a penguin and I can't climb stairs.

The worst thing is the aching in my hips and legs which starts around 2 in the morning and keeps me awake. I often get up then and take 5 mgs pred. I have tried taking the other 2 mgs later in the day (instead of lunchtime when I normally take it) but it hasn't made any difference. Anybody got any idea why I should have this aching only at night when I am lying down? It feels like PMR and is like the ache you get when you do too much at the gym.

I am reluctant to continue the taper while I am not doing so well. does anyone think I should up the dose of pred for a while?

Thank you in anticipation for all your wonderful help.

[PMRpro Ambassador]

healthline.com/health/hip-p...

Anything rings bells there? Is it upper legs, lower legs, all the way down? How do you sleep? Back? Side?

[Louisa1840 in reply to PMRpro]

Thank you Pro - that's a very helpful link. I am trying to sleep more on my back which is the best position but I am way more used to sleeping on my side. The experts think it is a bursitis. The ache is all the way down both sides from the hips down. I really don't want to increase pred if I don't have to............ It's rather demoralising when you read of others who are down to low doses after a relatively short period of time but I know YOU have soldiered on for 15 years I think?

We are all different should become our PMR anthem?

[PMRpro Ambassador in reply to Louisa1840]

If it is bursitis - and that is what I was fishing after asking how/where it develops - then far and away the best option is steroid injections into the area of the bursa. Mine will improve with more oral pred but it means more than an injection would be. I was offered injections at my last rheumy appointment but was waiting for the next which was only about 6 weeks later on 1st April. Then came Covid-19 ...

[Louisa1840 in reply to PMRpro]

Thank you Pro!

[Zebedee44]

If it is any comfort I have also had PMR for over three years and still at 7.5mg which I take as a split dose and it only just masks the pain. Could the pain be caused by your mattress or sleeping position?

My bedtime dose is a coated 2.5 mg pill which releases it’s drug closer to the cytokine release and seems to make the nights better and mornings easier. Maybe worth trying

[Louisa1840 in reply to Zebedee44]

Hi Zeb. Thank you for your reply. It's always good to hear of someone the same as me! The aching has eased somewhat the last couple of nights though I always feel it in the morning when cytokine activity is at its height (wish I didn't have to know words like "cytokine" never did before PMR!) The only difference I can think of is that my Health Club has now reopened and I had my first sauna in months on Monday. A naturopath I consulted when I first got diagnosed recommended saunas for PMR. All I know is it was lovely luxuriating in its heat with scented oils!!!

Hope this doesn't make me sound like a rich-pampered woman? My club is really good and you pay only $17.50 a week to access gym (not for me) pool (yes!) Spa and sauna (yes,yes)!! You can go as often as you like and access pilates and tai chi classes too. Good value?

Good luck with your own PMR path - yes, it's a bummer but there are plenty of other diseases that would be a lot worse and HOORAY for this wonderful forum with all its helpful advice and people who understand.

[PMRpro Ambassador in reply to Louisa1840]

Sounds like the gym I belonged to in the UK - with the same attitude: gym???? Er, not really. Although the vibrating plate thing was brilliant! Off-peak membership was so cheap - and daily aquafit followed by a toast in the sauna and Pilates kept me moving with PMR even without pred. Saved my life I'm sure.

[Louisa1840 in reply to PMRpro]

There should be more subsidy for Health Clubs and preventative medicine Pro!

[PMRpro Ambassador in reply to Louisa1840]

It would help if GPs actually understood WHAT works - and it isn't always the gym!