Am a 64 year old female diagnosed with SLE Lupus in the June 2000 at age 43, after 2 years of marriage. It affected my left lung (pulmonary fibrosis--doctors were preparing me for a lung transplant but refused it). At this time I was being treated with cyclosporine in preparation for the transplant. (Did not want to live with that quality of life). Along with this lung issue, there were lesions on my finger and elbow joints oozing with pus; a web-shaped designed covered my stomach (dermatomyositis) and had daily painful joints. I lived with sustained oxygen for 4 years before weaning myself of it. Have not walked around with a tank since then.
Initially, I was treated with 60 mg of prednisone for months. It made me overweight, but it brought relief. I never came off prednisone. Presently am taking a daily dose of 15 mg. This has keep me stable for years until recently. Lupus went into remission in 2003. My meds also included plaquenil and immuran (added in 2004 after retention of fluid in the feet). These work perfectly for me.
Being in The Bahamas, and in this pandemic, I can't travel to see a rheumatologist in the USA, so I adjust my steroids when necessary.
Never had a real flare until now due to a stressful condition. As a result, an internist put me on 40 mg of prednisone to combat the inflammation in my body. It's working. It is hoped that the flare will go away soon in order to take the first dose of the Pfizer vaccine.
My experience shows that there is "light at the end of the tunnel" for you and others who are battling the most severe form of this disease. You can have a measure of health with Lupus. It will take some time. Follow doctor's orders, and accept the support of your wife and friends. Be conscious of what your body is telling you, and adjust your activities accordingly.