Hi Averylynn. I'm sorry you're so sick! I was very healthy prior to SLE and my symptoms began with asthma, but so far advair and albuterol work. Re the pred, my internist was becoming more and more angry with my pred dependency because it raises my blood sugar and makes me eat too much. I hated it because of my moon face. So my rheumy started me on methotrexate 7 months ago. I was only on 20mg of pred daily, but I sure had a rough time giving it up, so I decreased just a couple of mg every few days. Finally I just bucked up and stopped the last few mg knowing I'd have a flare, which I did, but I refused to take the pred. I couldn't have done it without the methotrexate. During the last 6 weeks or so, I've been having more frequent, intense flares. I'm still refusing to take pred daily so my rheumy has me on a 3 day taper of 30mg, 20mg, 10mg with each flare so I can continue to work. Like Lynnwood said, be patient and decrease VERY slowly. Health, meds and quality of life are quite a balancing act! Many hugs and positive energy to you Averylynn.
Dx: SLE with CNS complications, major depressive disorder, Sjogrens, fibromyalgia, asthma, gerd, sleep apnea, hypertension, IBS
Tx: plaquenil, methotrexate, prozac, lamectil, flexeril, celebrex, lisinopril, lipitor, nexeum, seroquel, advair, actos, arthritis tylenol
supplements: multi vitamin, B complex, C, flaxseed oil
Better living through chemistry :D Donna