I am new to this website. I was diagnosed with PMR eighteen months ago (I am 60 years old). I started on 30mg pred daily and am now on 6mg daily.
Apart from briefly on the initial high dose I have never had real relief from pain and have had to take slow release ibuprofen as well which helps (all under supervision of my rheumatologist). I take a tummy liner Lansoprazole daily. Tried Methotrexate but bad side effects so persisting with pred.
Saw my rheumatologist last week for check up and he was concerned pred still not giving relief other than with ibuprofen. I have also developed marked weakness in my thigh muscles, ie going upstairs now a problem. He now thinks this is due to muscle damage caused by the steroids - in other words Catch 22, they are doing me as much harm as good. BUT he also suggested I try using non-enteric coated pred tablets as he wondered whether the coating was preventing me absorbing the full dose. Bingo! Within a couple of days of non-enteric coated tablets my PMR stiffness in shoulders and neck much improved, but still pain and stiffness in thighs/knees (this would tie in with his steroid damage theory).
He now wants me to decrease as fast as possible from 6mg steroids, 1 mg every fortnight and keep up the ibuprofen. He also wants me to increase my exercise rate as much as possible (I was/am an active person, keen gardener, played regular tennis before PMR). I do aqua aerobics, Pilates and as much walking, gardening as I can, through gritted teeth!
Thought my non-enteric pred tablet experience may be of interest to others who have experienced "steroid resistance" as my rheumatologist calls it. Wish he had thought of it earlier! Plus any advice on helpful exercise/physio/massage to try and get those muscles to work again? Also think he wants me to come off steroids too fast?
Any advice from my fellow sufferers very welcome. Stay warm, Brand