Realistic Expectations from Pred
Posted , 10 users are following.
My GP said symptoms would disappear and I would feel energised after 48 hours. This didn't happen. We've upped the dose to 20mg and the symptoms have much improved. However I am still slightly achy - and after lunch with a friend and a walk about town was flat out and had to rest. I'd love to know how you all have reacted to Pred. Was it a wonder drug and did it banish all your symptoms? I'll take slight achiness and stiffness over crunchy grabby pain any time - but just interested...
0 likes, 73 replies
ptolemy celia14153
Posted
Yes steroids are a wonder drug, it is just very unfortunate that they have so many side effects. However taking them does not banish the PMR, it merely suppresses the pain, in some lucky people this is 100%, but for most of us it is a bit less.
PMR is life changing and doctors who tell you that you can take steroids and then carry on as usual are lying to you. You need to accept that you need to take life a lot easier and plan your days more carefully. Learn to pamper yourself and rest, rest, rest.
celia14153 ptolemy
Posted
Thanks for the common sense! I'm getting the picture that the steroids suppress pain if you're lucky, and that you get to the lowest maintenance dose that works because of the steroid side effects - and just sometimes the polymyalgia clears up of it's own accord. We can't do anything to help the actual healing process. Is that about right?
ptolemy celia14153
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EileenH celia14153
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celia14153 ptolemy
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It's not a barrel of laughs but my heart goes out to youngsters who get this thing. I'm senior and lucky still to be here to have it! Thanks for the info.
EileenH celia14153
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All depends what you describe as a senior - the vast majority of PMR patients are over 50. Some doctors refuse to consider it can happen younger (of course it can) and some even won't diagnose it in under 65s!
celia14153 EileenH
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koen1 celia14153
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Celia, for me the first dose of prednisolone was a miracle. I believe that prednisolone acts a little faster than prednisone, but I went from debilitating stiffness in shoulders and hips to complete freedom. I was playing golf 2 hours after the first dose, not very good, but I could pick up the ball from the ground as I had not been able in many months! Then my gp put me on 10mg prednisone and sent me to the rheumy. I did not slow down as I should have. My two daughters were both moving last summer and I did way too much. Pain and stiffness returned, fever, headache, going to 15mg and then 20mg for 4 weeks. Then I got eye trouble and was diagnosed with GCA. Put on 60mg, symptoms gone, but fatigue, sweatiness took months to improve. Now I am slowly getting better, still on 22.5mg pred, using Eileen's DSNS method. I hope to be off pred by the end of this year.
Good luck with the prednisone. Hope you will have minimal side effects, like me. But both the disease and the reaction to prednisone is very different for each of us.
celia14153 koen1
Posted
It sounds as if you've had a rough time and certainly there's a timely warning about doing too much because the symptoms reduce. Our heads and habits are always in advance of our bodies so I shall take note of the pacing and resting advice. Glad you're sorting things out, hope it all continues well.
EileenH celia14153
Posted
"Our heads and habits are always in advance of our bodies so I shall take note of the pacing and resting advice."
That is one of the first and important lessons to learn - the second is the acceptance that this is the way it is and learning to chance your ways of doing things to accommodate the limitations. But EVERYONE forgets or thinks "it'll be fine" at some point. If you are sensible it will be once - some people seem to struggle to learn!
EileenH koen1
Posted
Prednisolone works faster simply because it is absorbed in the active form. Prednisone is inactive until it has been processed by the liver to form prednisolone. The difference is only about an hour or so for most people. But everyone is different in the form of their illness - and bursitis and tenosynovitis take longer to respond than muscle problems. And people absorb different amounts of the dose they are given - someone taking 10mg may effectively get 9mg or they may only get 5mg. That is why they start with a dose that is thought to be enough for anyone and then you reduce to find "your" dose. There are other factors though in the activity of the illness. Too many doctors for get how much difference there might be between different patients.
koen1 EileenH
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Michdonn koen1
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valerie81974 celia14153
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celia14153 valerie81974
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