Introduction and Seeking Lupkynis Advice
My name is Ed. I am retired USAF, and have been a full-time Bladesmith (knifemaker) since retiring in 2003. I'm located In Great Falls, Montana.
My road to a diagnosis has been long, as in more than a decade. After uncountable numbers of visits to local and state-wide Doctors, and two trips to the Mayo Clinic. 4 years ago my local Doc sent me to the University of Washington in Seattle. After 4 days of rigorous tests/testing, I was diagnosed with Lupus, which in my case attacked my lungs first, causing interstitial lung disease, and most recently Lupus Nephritis.
My reason for joining is that just today, I received my first supply of a medication called Lupkynis, which was approved by the FDA in January 21 for the treatment of lupus nephritis. After reading all the literature, it seems that in this case, the cure is worse than the disease! I'm anxious to hear if others have, or are using this drug, and any insights that can be offered.
As for me and my situation with Lupus, for the most part, I can be "normal", but suffer days when I am balled up on the couch in pain, particularly when the weather makes sudden changes. I take monthly Benlysta infusions, which helps significantly with both lupus and my lungs. (Docs still haven't figure out how the Benlysta is helping my lungs, but say it is...and I can tell myself)
I am fortunate enough to have retired military medical insurance, otherwise, there's little doubt that I would either be medically bankrupt or more likely dead by now. 
Hi Ed, thanks for joining our community and bringing these questions up. May I ask, have you had any side effects from Lupkynis? Or is it the literature that is making you worry? I can totally relate to both. When I was first suggested to start on azathioprine I nearly refused because I was so scared of everything I was reading online about it - and then nearly five years later I had to stop it due to one of the indeed worrisome side effects. And I know Lupkynis is a newer drug so you may not be able to get much feedback. (Our team wrote about it earlier this year: https://lupus.net/treatment/voclosporin )
I'd definitely take these concerns to your rheumatologist. Have you tried other immunosuppressants in the past? Most of the ones that are used for lupus tend to come with some pretty scary potential side effects, but they are often pretty rare. Of course, only your doctor can advise you on what is your best next step for medication. If you're truly against taking this one, then perhaps they can give you an alternative. But it may not be as bad as you think - it does undergo rigorous testing to get approval. In any event, I really hope you find something that can help with your lupus nephritis! And if you do decide to try Lupkynis then please do share your experiences for others who may be asking the same questions in the future. Thanks again, and wishing you the very best! -Ava, lupus.net team
