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.
Are you having ongoing organ injury with your flare or mainly pain and fatigue?
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?
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
@A MyLupusTeam Member How did it go? Are you having many side effects?
Can anyone give me advise on getting infusion treatment? My doctor wants me to start and I am very nervous.
Has anyone taken both of these drugs and and can share their experience with effectiveness, side affects, pros and cons of each one? I am currently on Benlysta and it worked well for me for 3 years but in the last month I have been having constant flares. My Dr wants to switch me to Saphnelo. I am scared and unsure. I would like to know more about Saphnilo as compared to Benlysta for those who have had experience with both.
I’m concerned about serious long term ramifications from use of either of these medications, but right now they are a necessary evil. I’m not looking for common AE’s, I’m looking for serious AE’s associated with long term use (PML, malignancies, serious infections, liver & renal impairment, etc). Thank you!
Thank you for sharing your experience 🥰
I have not but will follow, interested to know.