I just had my 2nd infusion of Benlysta yesterday. Apparently the first 3 are given 2 weeks apart, then I will get them once a month. I am anxious to see how well it works also. I’ve read good things about it!

Hello I'm new here and I will post a little about me soon but re lupus: 32 years sle / diagnosed with transverse myelitis in 2003 which set me out of work but very lucky mildly scarred my spine (the Inflammation) I am 62 years old started Benlysta in 2010 (there were about 40 of in a group on Facebook starting it ... I stopped in 2016 just felt like I was in 1 long flare all the time and I was getting sick upper respiratory all the time so my immune system became surpressed too much (I actually stopped it myself my doc didn't want to believe it) this is just some advice w these biologics (see a immunologist as well actually I think we all should to get a good picture of our immune system and they can help track it) now I can only take prednisone 15 mg daily to control because if I add anything else surpressed too much .. this is what happens after a while but I did get some good years maybe 3 on Benlysta .... also YES Anita-inflammatory diet!!! A must .... Aldo just had Heart attach im fine had 2 stents put in .. they said due to inflammation from the lupus did any of my doctors ever mention that cardio vascular disease is one #1 cause of death in lupus .... no so get your check ups w a cardiologist as well especially if you've had lupus a while .. also don't put of symptoms around the heart as I did ! Be well sorry this is so lengthy 😊. Good luck on the Ben I wish we had better meds better options but they r on the horizon supposedly

I've been taking Benlysta for 2 years now and just got my first negative complement level test in decades! It hyped me up originally, so I had to take it in the morning, but now it doesn't seem to make any difference at all.

I did Benlysta injections for 2 years - don't do injections - do the infusions. Why? Injections cost WAY more than infusions. Infusions are only once as month, injection are weekly.

It took over 6 months to feel or notice any change. I was just better overall. Less fatigue, less foggy brain time, skin rash from sun/heat is very rare, night sweats greatly reduced.

Since I switched to infusion 4 months ago, joint swelling has definitely reduced in severity, duration, and frequency. However I started on methotrexate 6 months ago. The methotrexate may be the reason for the joint improvement.

I also noticed with the reduction in joint swelling that I have joint pain that I rarely had before. It could be coincidental and age is the reason.

Saphnelo isn't covered by Medicare, so my rheumatologist selected Benlysta instead.

I would like to follow this as well. I start Benlysta infusions on the 13th. I have seen mixed responses for both Benlysta and Saphnelo.

Misteen