Prednisone blues

Hi everyone

I have been on prednisone for 8 years now and have tapered dosage down to 10 mg-several times. My rheumy tells me when I have a flare (usually heralded by a hard chill and fever) to increase my prednisone to 20 mg for 2 weeks, then taper by 5 mg every 2 weeks til I'm back to 10mg. The problem is, every time i get back to 10 the problems start-low grade fever, fatigue, and eventually the hard chill and high fever. I know she would like to get me to a lower dosage, but it looks like that's just not gonna happen. My hubby is real understanding about my illness, he kept me alive and took care of me when I first got sick before I was diagnosed-but he does have a hard time sometimes understanding just how bad I do feel. He doesn't give me flack about having to take it easy, in fact he fusses if I overdo but still I don't always tell him when I am really feeling bad cause it worries him and he hovers...which adds to my stress levels. The thing with the prednisone worries me tho, because I have heard of damage to the body(?) from long term usage. So far my bone density scans are good, but is there anything else I should be concerned about?

hi Python,

I've been on Prednisone going on 13 yrs in May, as high as 80mg to as low as 5mg every other day. My new maintance dose is 5 mg everyday, after my kidney transplant the docs said that i would not likely ever go back to 5mg every other day. With me i only have the side effects if i am at 15mg or higher (moonface, backhump, huge appetite, and others) the stretch marks are permanant and i do have a cataracts in my left eye but it doesnt bother my vision. The worst effect from the long term prednisone is the avascular necrosis in my hips, knees, and ankles. the docs think it has something to do with prednisone causing some sort of blockage in the smaller blood vessels that supplied my lower joints which cause them not to receive blood and eventually just die off. atleast that's what they think. But the good news is that it doesnt happen to everyone who has lupus and takes prednisone, the bad news is that it happened to me :( i take calcium supplements because my last bone scan showed some osteopenia so the docs wanted to head it off at the pass, and hopefully i will not loose anymore bone density.
Barbara's advice is really good, exercise when you can and eat as healthy as possible. good luck and take care.

You might try using a heart rate monitor (like runners use) to see if your heart is really racing as much as you think. I know sometimes it feels like my heart is racing, but if I check it I am often way off base! Go figure! It will come with instructions as to how high you should allow it to go (to strengthen it) before resting. Cheers,