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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?
Thank you.
Aileen
I am starting on Saphnelo infusions on Nov. 5th.
🙏🏼
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.
Hopeful 81. Thanks for the info. No way I could handle that expense. I have no c,o-pay at all. I’ve tried all of GoodRx and the other 1/2 p Pay stores..I hope you do well. I appreciate your info… read more
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.