Like the Huey Lewis Song “I want a new drug, one that won’t make me sick. One that won’t make me crash my car, or make me feel three feet thick “ 😁
I see my rheumatologist tomorrow and want to try something else. History: severely allergic to Plaquenil (which sucks). Don’t qualify for Benlysta (there is a two page criteria sheet and I don’t have nephritis or organ involvement). Have been on Methotrexate and it makes me severely iLL.
So, what’s left? I would love a monthly infusion if… read more
Thank you! I promise to report how it goes
The miracle is Saphnelo IV infusions. Something very new . But it works.
It works. You need to watch your food choices. Nothing that causes inflammation. When you have your numbers good with blood work you can introduce other foods moderately. Drink lots of water no… read more
I have been sick with a bad flare for several months. My rheumatologist is putting me on Saphnelo infusions. It is pretty new. Can anyone give me insight or information on this I would really appreciate it . Thanks in advanced.. God bless.
I just started getting Saphnelo infusions every four weeks after Benlysta stopped working for me. Is anybody taking Saphnelo and is it helping? Are you having any side effects? So far for me it's too soon to tell.
Thank you! I hope you feel better!
I have been diagnosed with lupus and a month ago a 24 hour urine protein and creatinine clearance came out abnormally with a protein of almost 300 but a low creatinine number. My nephrologist wanted to do a biopsy but my rheumatologist convinced her to wait a month and redo the test which I just got back the results of. The protein is still abnormal but has lowered somewhat probably because of a low-dose of prednisone I’m on and I’m awaiting an infusion in mid June to start a new treatment… read more
I am a medical doctor and have found that the commercials for the biologics are misleading. I did the blood work which lead to many of my diagnoses of all my autoimmune diseases then went to… read more
If you are taking Saphnelo:
Did you have a reaction/side effects?
Has it been effective? Reduce your Lupus symptoms?
Had you taken Benlysta before taking Saphnelo?
My rheumatologist wants me to start Saphnelo. Would appreciate hearing your opinions/reactions, etc.
I have SCLE. I tried Benlysta, but had a terrible reaction so I'm a little hesitant to have the Saphnelo infusions. Seems like result studies show it's "so so."
Thanks everyone. Wishing you all a good day!
I'm using Saphnelo. I'm due for my fifth dose in a week. Sometimes I think it's helping and then I think I'm imagining it. Maybe it needs more time to work. Are you using it?