I often feel as you describe when I am flaring with my CNS lupus symptoms, on top of my asthma, and am often taking 20-40mg of additional prednisone on top of the 5mg I need to take every day. It is my miracle cure but I take the higher doses only for as long as I absolutely must, like...to breathe, or stand up. My pcp and my rheumy back each other up, so I feel really blessed in having them. My prescription reads to take for 3 days prn and I get 20mg tabs. When I ended up in the hospital ED in March, my family dr. kindly chewed me out for not taking the dose I needed, and my rheumy prescribes a rescue taper of 40mg/x 1 wk, 30mg x 1 wk, 20mg x 1 wk then 10 and off. Unfortunately, I crashed and burned every 3 months because I needed to stay on prednisone, and finally, and slowly, managed to function with 5mg every day. I resigned my job in June, and I have just been approved for SSD. Cellcept has been suggested by my dr as an alternative to prednisone, and I have read good recommendations for it. At my next rheumy appt. in Oct, I will have to consider cellcept as my bone density is plummeting. And I hate living on prednisone. It kept me working for 5 yrs. longer than I expected, and giving up a job I loved was one of the hardest things I have ever had to do. I am still really sick, grateful every morning when I struggle out of bed as sick as I fell into it, that I don't have to go to work. It sounds like your dr. is taking good care of you,
ps. I am a gramma, too, and I enjoy only limited time with my grandaughter because I don't have the strength and energy to keep up with her. Think energizer bunny on steroids..... (my darlin' daughter deserves this... )
God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night.