Hi Torie! I am diagnosed with SLE in 2021. Since then i am on hydroxychroloquine. My flares were very bad and ended with prednisone 5mg/day from last 2years. I am not seeing any organ involved with my lupus disease being active on every single blood test with very high numbers. Since this was your latest vedio, i thought of asking this here. I was wondering when did you get diagnosed with Lupus Nephritis and when did you actually start Benlysta in your journey? I would really appreciate if you would specify the timing since i am at the stage that my joints hurting badly at this point with active flares- malar rash, nausea, headaches and fatigue, i was given this Benlysta option. I am not 100 % upto it as an option😢 as long as there is no organ involvement. Thank you very much for taking time in sharing all your journey!!!
Hi Torie. I’m on year 25 with Lupus and Sjogrens. I’ve been on Plaquenil for 24 years, but my ophthalmologist has encouraged me to stop it if approved by my rheumatologist. I was on Benlysta for a few weeks until I had to have emergency hip surgery. Can you tell me how you got past the fear of all the possible dangers of Benlysta and has it caused you to pick up illnesses, viruses, etc. more often? Thank you.
I love Benlysta. It gave me my life back. I had no energy and such intense joint, tendon, and muscle pain I almost couldn’t move at all. I was talking to a friend about the possible dangers of benlysta before I started taking it and she said “but what kind of life are you saving without taking it?” That was all I needed. 6 years in and my lupus is undetectable on the last year of blood draws. That was my reasoning and outcome and I know it’s not the same for everyone 🤍 I hope this helps.
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Hi Torie! I am diagnosed with SLE in 2021. Since then i am on hydroxychroloquine. My flares were very bad and ended with prednisone 5mg/day from last 2years. I am not seeing any organ involved with my lupus disease being active on every single blood test with very high numbers. Since this was your latest vedio, i thought of asking this here. I was wondering when did you get diagnosed with Lupus Nephritis and when did you actually start Benlysta in your journey? I would really appreciate if you would specify the timing since i am at the stage that my joints hurting badly at this point with active flares- malar rash, nausea, headaches and fatigue, i was given this Benlysta option. I am not 100 % upto it as an option😢 as long as there is no organ involvement. Thank you very much for taking time in sharing all your journey!!!
Hi Torie. I’m on year 25 with Lupus and Sjogrens. I’ve been on Plaquenil for 24 years, but my ophthalmologist has encouraged me to stop it if approved by my rheumatologist. I was on Benlysta for a few weeks until I had to have emergency hip surgery. Can you tell me how you got past the fear of all the possible dangers of Benlysta and has it caused you to pick up illnesses, viruses, etc. more often? Thank you.
I love Benlysta. It gave me my life back. I had no energy and such intense joint, tendon, and muscle pain I almost couldn’t move at all. I was talking to a friend about the possible dangers of benlysta before I started taking it and she said “but what kind of life are you saving without taking it?” That was all I needed. 6 years in and my lupus is undetectable on the last year of blood draws.
That was my reasoning and outcome and I know it’s not the same for everyone 🤍 I hope this helps.
@@toriebrame3419 Thank you so much for the encouragement. Your story is a blessing to me.
Huh my doctor is totally fine with me taking melatonin😅. He says it is also important to sleep well🤭. I notice no effects of the melatonin
Interesting!! Thanks for adding this!