Woolie
Senior Member
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- 3,263
Update on prednisone:
Its been nearly four months now I've been on prednisone. Started after a two-months crash that left me completely bedbound, unable to lift my head from pillow and (obviously) threatened my job. So I didn't have much to lose!
I started on 20mg a day, which worked great for a few days, then the symptoms came back. Then I went up to 40mg and the symptoms went away and stayed away. Since then, I have worked steadily on trying to get the dose down. I have got to 25mg, but no lower yet. There is a lot of fluctuation in the underlying symptoms, so 25mg will work fine for say a week, then the signs of an upcoming crash will come on, and I'll have to increase the dose for a few days. The increases kick in 2-3 days later, and I'm then able to drop down again.
I still have to be careful what I do, and it varies from day to day. On good days I can go to work (desk job), come home, cook for my kids, even do a few light chores and/or go for a gentle 20 minute walk, and relax at the end of the day with no pain. On bad days I can only do sedentary things (working from my desk or sofa, driving not walking, buying in stuff for kids' dinner). But still way better than my head stuck flat on my pillow! Plus the bad days don't last if I up the prednisone quickly.
I would like to get off the pred, of course, but would rather be on it that completely bed bound and out of a job. I may not be able to get off it for some time. But its the least worst of options.
Side effects: I am managing my weight (that's a challenge), and taking risedronate to counter the osteoporosis risk and colecalciferol (Vit D). Doc is monitoring my bloods, bp, weight, etc, everything good so far. I felt some psychological effects at the beginning (jumpiness, hot feeling, insomnia), but not any more. I feel normal - neither elated nor depressed - and my mind is working well. The only side effect that really bothers me is that my face is puffy. But hell, its what's the point of being sick and pretty? Better to be less pretty and enjoying my life!
I'm not recommending this to anyone, just sharing my experience. But this could be something other people might want to consider if things get as bad as they did for me. You obviously need a supportive doctor, who can monitor the risks, but at the same time respects your desire to have some quality of life. And that risk vs. quality of life trade-off will be different for everyone. I feel a bit more comfortable about taking this risk at age 50 than I might at 25, for example.
Its been nearly four months now I've been on prednisone. Started after a two-months crash that left me completely bedbound, unable to lift my head from pillow and (obviously) threatened my job. So I didn't have much to lose!
I started on 20mg a day, which worked great for a few days, then the symptoms came back. Then I went up to 40mg and the symptoms went away and stayed away. Since then, I have worked steadily on trying to get the dose down. I have got to 25mg, but no lower yet. There is a lot of fluctuation in the underlying symptoms, so 25mg will work fine for say a week, then the signs of an upcoming crash will come on, and I'll have to increase the dose for a few days. The increases kick in 2-3 days later, and I'm then able to drop down again.
I still have to be careful what I do, and it varies from day to day. On good days I can go to work (desk job), come home, cook for my kids, even do a few light chores and/or go for a gentle 20 minute walk, and relax at the end of the day with no pain. On bad days I can only do sedentary things (working from my desk or sofa, driving not walking, buying in stuff for kids' dinner). But still way better than my head stuck flat on my pillow! Plus the bad days don't last if I up the prednisone quickly.
I would like to get off the pred, of course, but would rather be on it that completely bed bound and out of a job. I may not be able to get off it for some time. But its the least worst of options.
Side effects: I am managing my weight (that's a challenge), and taking risedronate to counter the osteoporosis risk and colecalciferol (Vit D). Doc is monitoring my bloods, bp, weight, etc, everything good so far. I felt some psychological effects at the beginning (jumpiness, hot feeling, insomnia), but not any more. I feel normal - neither elated nor depressed - and my mind is working well. The only side effect that really bothers me is that my face is puffy. But hell, its what's the point of being sick and pretty? Better to be less pretty and enjoying my life!
I'm not recommending this to anyone, just sharing my experience. But this could be something other people might want to consider if things get as bad as they did for me. You obviously need a supportive doctor, who can monitor the risks, but at the same time respects your desire to have some quality of life. And that risk vs. quality of life trade-off will be different for everyone. I feel a bit more comfortable about taking this risk at age 50 than I might at 25, for example.
