Benlysta and Allergic Reaction: What Users Say

• Ros...
• Taken for 1 to 6 months
• September 6, 2016

For Lupus "I had difficulty tolerating steroids on a daily basis. My doctor suggested Benlysta since other patients had success with it. My first infusion went well with no side effects. My 2nd infusion was administered 2 weeks later, and I had a severe allergic reaction. My blood pressure and heart rate were dangerously high. After 911 was called, I spent 3 days in the hospital recovering. It's now 6 months later, and this allergic reaction has magnified my asthma greatly. I get short of breath very easily and will remain under the care of an allergist. I knew an allergic reaction was a possibility. I'm now back on steroids."

• SUM...
• April 19, 2018

For Lupus "I was diagnosed with SLE, RA, and Sjögren's syndrome a little under 2 years ago. I am currently 40 years old. I have tried numerous oral medications as well as injections. Most I have had allergic reactions to. Had a few trips to the hospital for dehydration along with an unexplained irregular heart rate. This is now being treated with Metoprolol. One medication caused pancreatitis. I started Benlysta 6 months ago. With my first treatment, I was extremely tired, and the next day my mind was forgetful and foggy. I am pre-medicated with Tylenol and Benadryl with each infusion. I have noticed a big difference in my joint pain and fatigue. I would not say that it is completely gone, however, there is a vast difference. I still take a low dose of prednisone and Plaquenil. I would like not to have infusions for the rest of my life as I would need a port because my veins will be blown out in the next few years from monthly infusions."

• Doc...
• Taken for 2 to 5 years
• July 3, 2024

For Lupus "I've had SLE for 33 years. After I reached my mid-60s, the flares became worse and I was barely getting out of bed to use my bedside commode. I began seeing a new rheumatologist. He tried methotrexate, plaquenil, Ivig infusions, about everything. He put me on Actemra and I had an allergic reaction. Then he put me on Benlysta. I thought, 'Here we go again!' But it worked! I've been taking the subcutaneous injections for a little over 2 years. My life has done a 180. I'm up, active, happy, and have as much energy as a 70-year-old, wheelchair-bound woman can have. The injections sting a little, but I inject the medication very slowly with pauses in between pushing the plunger. It seems to help a lot. And it's a SMALL discomfort compared to the pain, fever, and profound fatigue that I would have without it."