Benlysta and Dizziness: What Users Say

• Tam...
• November 16, 2015

For Lupus "I have battled lupus since 2009. I went into remission and had a flare in 2012. My doctors have tried everything and finally talked to me about Benlysta. I was very skeptical, more than anything, afraid of what this would do to my body. I have been on Benlysta now for 1 year. I have no joint pain at all, and my blood tests are improving. Unfortunately, there are side effects of the actual drug. My heart has randomly started beating insanely, and I went to the emergency room twice. They say I am fine and send me home. At the end of May this year, I have started feeling this lightheaded feeling in my head, and to this day, I don't feel normal. I had dizzy spells when going to bed, where I would jump up and be out of breath."

• smc...
• Taken for less than 1 month
• October 29, 2018

For Lupus "I am 69 years old and was diagnosed with SLE 2 1/2 years ago. Prior to lupus, I had Primary Sjögren’s Syndrome for years and took Plaquenil for 18 months and stopped it for retinal issues. After stopping Plaquenil, I was prescribed weekly oral methotrexate, which after 4 years gave me debilitating diarrhea and we stopped it. I had my first infusion of Benlysta one week ago, and I felt better than I have in years. My premedications were oral Tylenol and IV Benadryl and Solucortef. The only side effects I noticed were waking up with a headache the first night and some mild dizziness that I still have occasionally. Most nights I don’t have pain, but when I do, the opioid covers it. I have been taking prednisone 15 mg daily since the March flare and am hoping to be able to taper it off. The prednisone has caused a 15-pound weight gain, and I have 3+ pitting edema in my thighs. Overall, I would definitely recommend Benlysta to another person with SLE."

• Dma...
• Taken for less than 1 month
• April 9, 2018

For Lupus "Exhaustion, bone pain, spine pain, ocular migraines, vertigo, potassium depletion, chest pain, heart problems, bone damage, memory problems, nystagmus, can't sleep due to pain, fevers, GI problems."