Benlysta and Headaches: What Users Say

• Dee...
• Taken for 6 months to 1 year
• January 29, 2018

For Lupus "I was on Benlysta IV infusions for 9 months and felt very good after my initial three infusions, which were every two weeks. I got a very bad headache for the first 24 hours after infusions, but after that, my joint pain and fatigue improved immensely. Two months ago, the infusion nurse was not able to start my IV and recommended that I go on Benlysta subcutaneously. I was told by my insurance company, which is Medicare, that because they could not get an IV in me, this would be fully covered. Much to my devastation and shock, I found out that this was not covered and the cost is $1,158 per month. This is outrageous and more than what my SSDI payment is per month! In addition, cost aside, the injection is extremely painful. It's almost impossible to give the full amount because of how painful it is. My thigh burns all day after giving myself the autoinjection and is bruised and feels like I've been punched for about 5 days later. I don't feel the same relief that I felt with IV."

• Joj...
• Taken for less than 1 month
• February 12, 2020

For Lupus "I have severe SLE, having been diagnosed over 15 years ago. I’m currently on plaquenil, steroids, and CellCept. I have lived with severe pain in my joints and my spine. I just did my second injection (I inject once per week). Right now, I cannot get out of my own way. I have no energy and no drive to do anything. Having to inject once per week, am I going to feel like this forever or are these symptoms of exhaustion going to get better? I can deal with the headaches and such, but this brain fog and lack of energy is really bothersome."

• GER...
• Taken for less than 1 month
• September 13, 2012

For Lupus "First infusion - experienced swelling everywhere (inside and out), two days after infusion. Day 1 had a migraine-like headache (light sensitivity), fatigue, some heart rhythm issue (temporary), and temporary voice changes. I was pre-dosed with Tylenol. Second infusion - pre-dosed with Benadryl and solumedrol, very slight swelling, headaches coming on now (I was told: Literature says these headaches will improve with subsequent infusions), less heart involvement, I tried to sleep through most of the infusion time (1 1/2 - 2 hours with prep). I was blessed to be accepted by the HealthWell Foundation where I applied for co-pay assistance."

• Bea...
• Taken for 1 to 6 months
• October 25, 2014

For Lupus "I was one of the first patients in the United States to take Benlysta in June 2011. I had to slow the infusions down to three hours instead of one and a half hours. I experienced nausea and a mild sort of asphasia (a sort of muddled thinking) and a headache. I was also tired after the infusions. Each time I had an infusion (6 total), my temperature would rise about a degree and I felt discomfort in the abdominal/bladder region. The discomfort only occurred after the Benlysta infusions! Eventually, it did turn out to be serious, and this is why I'm writing this review. Though rare, the medicine lowered my immunity."

• 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."

• Gro...
• December 19, 2020

For Lupus "Monthly IV Benlysta decreased symptoms fairly well for 2-3 years. Gradually, it wore off as I got closer to my next infusion. After 5 1/2 years, I switched to weekly SQ injection. Both IV & SQ caused foggy head, headaches, GI upset for a couple of days. SQ auto-inject is difficult & painful to administer. It is absurd that they would make a drug so hard to grip and hold when the people using it have joint problems. I stopped using it after 2 months. I gradually realized 10 months after discontinuing Benlysta that a huge depression was lifted. I am prone to depression, so I thought it had been just me, but now that I’m off Benlysta, I feel so much better mentally, even though my pain is worse without treatment. Overall, I think Benlysta IV is better than SQ, and it does help, at least for the first 2-3 years, but to be used with caution in people with a history of depression."

• ABe...
• Taken for 6 months to 1 year
• November 11, 2021

For Lupus "Benlysta has completely changed my life. It’s been almost a year of treatments, and my quality of life is so much better than before. Initially, I was really scared to start the infusions, and I was very nervous about side effects. I still get fatigue, headache, and a bit of nausea for 2 days after my infusions now, but it’s so worth it in exchange for everything I’m able to do with ease now."

• Smi...
• Taken for 1 to 2 years
• May 17, 2018

For Lupus "I’ve been back on Benlysta for the past 2 years this go around. Lately, I don’t feel the treatment is working anymore. I experienced increased shortness of breath, leg pain, and headaches."