I have been taking pred since march last year starting on 20mg now down to 7mg. I have osteoarthritis in my knees and right hip and probably in my spine although I've not had it xrayed to confirm my suspicions. Since I decreased my pred to about 11 or 12mg my knee pain and back pain have returned with a vengeance. Last year when we went to Croatia when I was on about 14mg pred I felt great, no pain and was able to walk for hours despite having a broken rib! We go on holiday in may and I'm worried how I'll manage as I can barely walk at the moment. You might think that I'm mad to even consider this but I'm wondering if I should ask my GP if I could increase my pred for the week we're away and then go back to my normal dose as soon as we're home? I need to get off pred as soon as possible as it's had a really bad effect on my diabetes but I know it's going to be some time yet. My GP told me to expect to be on pred for 3 to 5 years. Idea's anyone?
At higher doses of pred a lot of our other aches and pains disappear but sadly they slowly come back as we reduce. You really need to talk to your GP about other painkillers for the non PMR symptoms rather than upping pred.
I was told I would have to take pred for four years when first diagnosed. The truth is no one actually knows, it could be less than two years or six years plus. It really depends when the PMR takes it into its head to go into remission. Very much how long is a piece of string.
I would definitely ask ..what good is us life if it doesn't have quality
Where are your pains that make it difficult to walk?
I did too much recently, put too much weight on my right leg and now my right hip trocanteric bursitis has flare up! Can't walk much either, must stop often and rest, but inactivity makes it worse. I'm gong in for cortisone shot next week. Had it a year ago.
I have had fibromyalgia for 12 years, an uneractive thyroid and type 2 diabetes which has been made considerably worse by the pred. The pain I have walking is in both my knees but much worse in the right and also in my lower back. After sitting even for a short time I stagger and limp for several minutes when I stand up ( I feel like quasimodo!!!) I had a cortisone injection in my right knee about a year ago which made no difference at all. I saw a rheumatologist a couple of years ago who suspected bursitis in my right hip. I used to take dihydracodeine but after falling asleep for a split second at the wheel I now only take it just before going to bed as it helps me fall asleep ( I laso have restless legs). Painkillers don't help and I feel the best pain easer is a hot water bottle. I still have stiffness and widespread pain in my shoulders, arms and neck but don't know if this is PMR or fibromyalgia, all I know is that when I was on the higher dose of pred I was virtually pain free and now I feel about 90 despite being 56.
Hi Debbie, do you think you are on too low a dose of pred if it worked originally? It sounds as if you should increase it to the level you were last comfortable. What dose are you on at the moment?
Driving with dihydracodeine I found is not a good idea, but it does help sleep, although the downside is constipation!
I have an orthopaedic surgeon friend who says that giving cortisone injections is an art and you can just be a millimetre out to make it useless. Needless to say my friend thinks he is pretty good!