Starting Lupkynis and Seeking Support

After a 22+ year military career, retiring in 2003, I started having issues just a couple of years later. Pain throughout my body, feeling tired, and just unable to do the things I used to. At first, I put it down to being an "old man," but things got worse.

Searching for answers

Local doctors had no ideas, and sent me off to the Mayo Clinic, when they diagnosed me with "lung nodules," and began me down a road of 3 years of chemo drugs....which of course did nothing. Round and round for several years, and then 3 years ago, my local Doctor wanted to send me back to Mayo again...but no appointments for 7 months! So instead, they sent me to the University of Washington in Seattle.

Receiving my diagnosis

After 4 days of intense tests and testing, I was diagnosed with lupus, which in my case first caused interstitial lung disease. The University of Washington doctors started me on Cellcept, and my local rheumatologist started monthly infusions of Benlysta. Most recently, as in just a few months ago, I was also diagnosed with Lupus Nephritis (kidneys).

Starting a new treatment plan

Like most, I have "good" and "bad" days, but try to keep going as best I can. My main reason for signing up, is because today, I received my first supply of a drug called Lupkynis, intended for lupus nephritis. The drug was just approved by the FDA in Jan 21....and I am curious if there are others who take it. After reading all the literature, I have to say, this might be a case of the cure being worse than the disease! I am going to attempt to start the drug this evening....and if anyone else is taking it, I'd certainly like to hear your experiences with it!

Seeking community support

Also just looking for another support mechanism. I work alone all day in my knife shop, with just my two dogs....and there are days that can get very trying...especially those days when nothing seems to help the pain and/or fatigue of lupus.

Interested in sharing your own diagnosis story, treatment experience, or another aspect of living with lupus?