Benlysta and Pain: What Users Say

• Ren...
• Taken for 6 months to 1 year
• June 8, 2020

For Lupus "I have been on BENLYSTA for about a year now, and it has helped me so much!! I used to be fatigued, I could hardly function, but it has given me some energy back. It also helps the pain so much! I give myself the injection once a week, and I'm with some of you.. it hurts soooo bad. Luckily it's not that long, but it really hurts. I have to psych myself up to do it. I've heard it doesn't hurt as much in the belly, but I cannot bring myself to do it. It's worth the pain though, because it has really helped me!"

• Ean...
• Taken for 5 to 10 years
• January 6, 2020

For Lupus "I have been on Benlysta for 7 years, still taking Plaquenil and Imuran for LN. I was diagnosed at 14 years old with primary lung, heart involvement; however, the following years SLE progressed to bone, renal, skin, and brain involvement. Since being on Benlysta, I’ve not had a flare nor been on steroids, which in my past have wreaked havoc on my bones, resulting in hip failure/AVN at a young age. My C3, C4 complement levels have been normal for the past 5-6 years. My anti-DS DNA levels are 24 hrs afterward. Since switching to the pre-filled syringes, I can resume my normal activities within an hour. I find that my abdomen is easier for injecting than my leg. I tried the auto-injector pens, but it was more painful. I’m just curious why an insurance would require someone to return to monthly infusions, increasing the chance for infection, human error, erroneous/improper constitution, etc."

• Fla...
• November 16, 2017

For Lupus "I’ve been on the Benlysta infusion for almost 2 years with great success. During this time, I’ve been able to stop taking prednisone and reduce my Vicodin for breakthrough. This month is my first on the new Sub Q injection, and I’m dying. First, it took a while to get approved via insurance. I started these “behind” in pain, and after 3 weeks, I’m no better. I plan on discussing with my Dr. in the next week or two. So my rating is for the infusion, NOT the weekly injection."

• Deb...
• Taken for 1 to 6 months
• February 27, 2020

For Lupus "The Benlysta subq injections are so painful to me that every time I auto-inject, I’m not able to hold the needle in place and take it out before my countdown is supposed to end. Therefore, I would say I am not receiving 2/3 of the injection. No, I don’t want to get monthly infusions at this time. I hope in the future alternatives are available or the prefilled injectors are made to deliver a less painful experience."

• Hop...
• May 13, 2021

For Lupus "I have SLE and SS. My main issues are extreme fatigue and brain fog. I have given myself 3 injections so far: one in the stomach and one in each leg. It hurts, no lie. But the pain only lasts about 20-30 seconds (seems like forever!). It hurts less in the stomach, but it's harder to do if you have belly fat like me! So far, my issues are on the mental side. A couple of days, I felt paranoia, not normal for me. I’ve cried easily on some days, happy or sad. One day I felt super negative, like nothing was going to ever work. Weird stuff like that. I’m aware of it, so it is like watching myself from the outside. Anyway, I’m still fatigued with brain fog, but I’m staying hopeful that this will work for me over time. Also, I was already forgetful, but I seem a little more than usual. My insurance covers part of the cost, and I am on a program that covers my co-pay for one year. I hope it helps you and me too!"

• 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."

• Lcp...
• Taken for 2 to 5 years
• May 29, 2023

For Lupus "I got Benlysta via infusions approximately 8 years ago and loved it. RA became aggressor and SLE was recently deactivated. Granted, I was not of adult age getting infusions and now have my own life and child, so opted for injections this time. This literally feels like poison going in. I’ve had over 10 years of being pricked and injected but thought it was due to my body’s underlying symptoms exaggerating it. Just did injection 5 and I hate it. Hoping it’ll help again and not emphasize depression. I would recommend because I remember this being one of my favorite things to get when doing infusions because I’d take a nap and wake up brand new. Pending opinion now."

• 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."

• 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."

• Dug...
• Taken for 1 to 2 years
• October 3, 2024

For Lupus "Drug seems to make me tired. I don’t have any energy, a lot of leg pains, just don’t feel like doing anything, kind of depressing actually."