Well! You and I are one of the few that WANT to be on Prednisone, lol! Like Sj, I would stress how important it is for you to remain on it. Tell them that without it, you flare up. You feel much better and healthier staying on even a low dose. This is your body, not theirs. If you want to stay on pred, you have the right.
For me, prednisone will be a life long drug to take. I'm okay with that. I know there are side effects to taking it long term, but I'm looking after that. Didrocal and extra calcium for my bones, etc.
The constant ups and downs of dosing with prednisone actually makes your body work so much harder to stay well. Staying on a constant dose and doing little tiny adjustments is much easier on your adrenals, and on your lupus. Do you have a dose that really works for you? A dose that when you're on it for a while, you barely notice any lupus symptoms? If you have reached a dose like that, then that's what you need to stay on. Be aggressive with your doctors. Tell them, don't ask. Even if they tell you to taper off of it, you can say, "no way!" Just stay on it! You know your body best. Doctors don't get it. They really don't. Unless they know 100% how you feel on it and off it, they won't get it. All they'll think about is the bad side effects, not the fact that it's saving your life when you're on it.
I hope this helps! I know it's a great medication for us, and it is a wonder drug in my opinion. It's given me my life back, and it sounds like it does the same for you too!
Good luck and let us know how you make out!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus