Benlysta and Fatigue: What Users Say

• Lin...
• Taken for 5 to 10 years
• March 8, 2020

For Lupus "I found out that if you inject Benlysta in the stomach is less painful. If you take the medication out of the refrigerator for 4 hours (the med can be as much as 12 hours out after that it has to be disposed) before injection time, it will be less painful when the liquid enters your system. Put the medication away from light, hot, or cold and then inject. If you are injecting yourself, do it very slowly with the prefilled one but not the auto-inject. The auto-inject will release the med very fast and it's very painful. I've been using it for 5 years now. Still have a lot of joint pain, but the fatigue, the brain fog, and the other symptoms are much better. I hope this info can help and bless someone."

• Jal...
• January 25, 2014

For Lupus "I'm a 42-year-old African American who has been diagnosed with lupus for 16 years. I've been taking Benlysta for one year now and notice a big difference in my body. I have more energy. Before taking the medicine, I suffered greatly from fatigue. I feel little to no joint or muscular pain. Before the medicine, I suffered from severe inflammation and swelling in my joints and could hardly walk some days. I now jog on my treadmill, go to Zumba classes, and workout at Curves. The medicine has been a godsend for me, and I'm so grateful for the opportunity to witness to this great invention. The only downfall is my insurance will only cover 80%, which leaves me a hefty $800.00 balance each month. I'm on disability and cannot afford this expense."

• PAC...
• Taken for 2 to 5 years
• August 25, 2020

For Lupus "I have been on Benlysta almost 4 years, and it has worked great for my systemic lupus erythematosus. Before that, I was taking hydroxychloroquine, which made me so nauseous and caused stomach cramps that I had to stop taking it. Benlysta is very well tolerated, just very fatigued the next day. The first infusion really hit me hard with flare-up symptoms, but then I got so much better after that. No longer need a wheelchair. Only need a walker if I overdo it. The swollen, painful joints are gone, and the energy significantly improved (unless I overdo it). I am still careful to respect my physical limits and avoid my triggers."

• 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."

• Dox...
• Taken for 5 to 10 years
• August 22, 2018

For Lupus "I have been on Benlysta for almost 7 years. It has been a great drug for me. It helped tremendously with my joint pain and fatigue, although I still feel tired, might be my age of 68. I have heart involvement with my lupus, and the drug has kept down the inflammation in my coronary arteries."

• Roc...
• Taken for 1 to 6 months
• March 9, 2022

For Lupus "I have been on Benlysta for only 6 weeks now, but can already notice a difference in my fatigue and joint pain! I have so much more energy and am no longer dying for a nap each afternoon or sleeping more than 8-9 hours a night. I can exercise again without my knees swelling or the joints in my feet aching for days afterward. I want to say that other people's reviews about the shot being painful scared me before I started, but I don't think it hurts at all! I leave it out for an hour and autoinject it into my stomach. Just a brief pinch! I was able to get the Benlysta copay grant program to cover up to $15,000 in deductible fees per year, which made it possible for me to go on this medication. I am not low income, but middle class with rubbish insurance. I would not have been able to justify/pay my $9,000 deductible with accruing debt. The program approved me within an hour of filling out a 15-minute online application. So, to anyone who thinks they can't afford it, look into that program!"

• 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."

• 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."

• 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!"

• 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."

• Ive...
• Taken for 2 to 5 years
• February 22, 2022

For Lupus "Benlysta is the only medication that helps with my level 3 lupus, it gives me relief from swelling, pain, and overall fatigue. While the first day I am sluggish, the next day I feel like an energizer bunny. The only downfall is that it doesn’t last for an entire month, and I can only have this medication every 4 weeks. Overall, I am very pleased with this drug and grateful for it."

• 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."

• 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."

• Den...
• Taken for 5 to 10 years
• May 25, 2024

For Lupus "Since taking this medication, I have not had any flare-ups nor rashes. My fingertips are no longer subject to pain from cold water (I am now able to wash veggies in cold water without pain). Hair loss has been minimized. Chest no longer hurts with deep breaths. Episodes of fatigue issues are almost nonexistent. With the exception of the weekly injection (and additional medication), I am now able to live a mostly normal life."

• Ros...
• Taken for 6 months to 1 year
• February 24, 2025

For Lupus Erythematosus "I’ve had no side effects until this last one. I’ve been having monthly infusions for a year. It really helped limit my flares, and I felt better than I had in a long time. I have SLE lupus and tumid lupus. Thursday, after my infusion, I started breaking out with rashes and welts. I used my steroid cream to calm it down, but then I felt nauseous and like I was getting sick and extremely fatigued. Today is a little better. I hope it’s nothing. I don’t want to stop the infusions."