I am currently on 13mg of prednisolone and going down 1mg a week.I have been on this crap for at least as long as I have been diagnosed which is nearly 2 years. I go off it for a week and get real sick then they put me on another high dose to compensate bring it down and the cycle starts again.There has got to be another way and my g.p is about to retire and gives little crap about the effect these drugs have on me.I am in the process of changing g.p but that first appointment won't be til the 24th of august.
There is likely not a more difficult thing to do than to wean off steroids, after two years, its is really difficult. My thoughts and prayers are with you. But hang in there, its something you need to do. There is a Doc in Canada by the name of Carter Thorne who has developed several weaning calandars you can find them here: http://rheuminfo.com/physician-tools/prednisone-tapering-calendar
Anyway take a look and share them with you team. They have been used by a bunch of folks. You may also want to consult with endriconologist. If your adrenals are shocked you may need more help than just a taper. You might also ask about switching to prednisone as opposed to prednisolone, while similar they are different. 1mg Prednisone is actually less med than 1 mg Prednisolone, so the taper is a bit easier to manage.
I know how you feel, I have been on prednisone everyday since I was diagnosed 5 years ago. I know the effect this drug has on my bones and I have been trying to get off of it for the last 2 years. The lowest dose I have been on is 7.5mg. Anytime I try to decrease further I have a flare up in my eyes called Keratitis and my eyes also become very light sensitive. When I go the eye doctor he tells me there is nothing he can do but give me prednisolone drops for my eyes because the main cause is lupus then her refers me back to my rheumatologist who has nothing new to say. And chest pain, I know what that's like as well but it happens so often I stopped telling my doctors about it because all the test come back negative and they tell me its likely anxiety. LOL! of course I am anxious I have lupus. What to do? Well, for me I had my first acupuncture appointment last week and consulted with an herbalist who put me on a couple of herbs. From the Chinese medicine stand point they have been treating auto immune diseases for thousands of years by treating the cause and the symptoms, not just the symptoms like western medicine does. I don't know if that is the right course of action for you but I am fed up of 5 years of multiple drugs, multiple infusions, multiple doctors and I still feel like crap most days. If you are only seeing a G.P. for lupus I would recommend getting a rheumatologist that deals specifically with connective tissue disorders such as lupus they know more about than a G.P. would.
I hope it helps to know that you are not alone :)
I do see a rheumy but they are in town and it takes 1 and a half hours to get there then after my appointment I have to wait around the hospital for 4 or 5 hours to get a bus back.So I don't go.Last time I went was on the 4th of march last year-my birthday-but they just increased the steroid to 75mg.