Can anyone give me more details on their own personal experience with Benlysta?

Hi women 9469, Thank You for sharing your experiences with the roller coaster rides of steroids to treat Lupus. It is not a good feeling. I also gained alot of weight, it can not be helped. I was diagnoised 6 years ago and have gone down the same path as you Steroids for 2 1/2 years I too take plaquneil and always will, even with being on Benlysta. I have tried methotrexate for 1 year it worked some and then fizzled out so I have been on Imuran along with Plaquneil. I started my infusion on December 14, 2011 the first infusion was not bad I had a very stuffy nose and a cough for 48 hrs I was also nauseated this would come and go for about 2 weeks after the treatment. I would try sucking on a peppermint candy that only helped a little. So my Rhuemy prescribed zofran ( thats my friend ) I really recomend this drug for Lupus patients recieveing Benlysta, dont fight it, if you feel sick get zofran. I also suffer with drepression and other mental problems.

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I am and being treated by a highly qualify psychatrist Dr. Singer for the past 7 years. She graduated in one of the 10 top medical schools in the US. I also have with a psychologist that works with me on the mental issues I suffer. One of the side effects is worsening anixety or depression. I have had a total of 4 treatments my last one was on February 8th. I have had worsening aniexty and depression, I saw Dr. Singer 2 weeks ago, going over how I was feeling, she had to make a few adjustments in my medication I am doing much better today.
Benlysta is a miracle drug. I have struggled with not being able to walk, sit down on a chair getting up was a challenge for me. I would try so hard to get down on the floor to play with my 3 year old grandson once I got on the floor getting up was impossible. I loved to ride my bike, swimm, walk, I am a knitter. Lupus took my active and quality of life away, even with taking steroids, they helped some in the beggining but they fizzled out too. I just kept having to take higher and higher doses for the flares. Now because I've been on steroids for so long and at times very high doses I need to have both my knees replaced.
Benlysta is giving me my life back. This last treatment I really felt fantastic. I can move much better go up and down the stairs normal, I've been to the club 7 times since February 8th I am swimming and riding a stationairy bike. I go slow and pace myself. but I am active again, I can get down and roll around with my grandson, Knitting is my passion I've able to finsh projects that I had to just put away. The only thing I have notice in these past 3 treatments one week before my infusion the pain,stiffness and swelling starts to come back. I'm due to have my next treatment untill March 8th, I wonder if the pain and stiffnes will start to come back. Today, I feel healthy, I feel fantastic, I never knew how bad I felt untill I felt so good ( hope that make sense to you!) I hope you are having the same results as I am women9469. Please keep in touch mom3905