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Benlysta for Lupus User Reviews

Benlysta has an average rating of 7.8 out of 10 from a total of 55 reviews for the treatment of Lupus. 67% of reviewers reported a positive experience, while 7% reported a negative experience.

Benlysta rating summary

7.8/10 average rating

55 ratings from 57 user reviews.

Compare all 29 medications used in the treatment of Lupus.

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36%
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13%
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7%
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11%
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Reviews for Benlysta

  • Lina
  • Taken for 5 to 10 years
  • March 8, 2020

"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 de disposed) before injection time it will be less painful when the liquid enters in your system. Put the medication away from light hot or cold and then inject. If you are injecting in yourself do it very slowly with the prefill one but not the auto inject. The auto inject will release the med very fast and it's very painful. I 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."

9 / 10
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134 Report
  • Sunsh...
  • October 23, 2019

"I was diagnosed with lupus at 17 years old. I was in excruciating pain, debilitating fatigue and a horrific rash on my face (malar rash as it turned out). Even with a positive ANA (with the pattern suggestive of lupus), a ridiculously high ESR and CRP and my obvious symptoms. The doctors didn’t want to act on my condition. It wasn’t until my treatment for rosacea failed that my dermatologist did a skin biopsy that confirmed my diagnosis. Once on treatment, nothing really worked. I stayed on the Plaquenil (til this date) for fear of coming off even though I don’t get much relief. I’ve been on Benlysta since 2013 and it has changed my life. It’s a miracle drug and I recommend everyone to give it a fair shot. I was skeptical too but it’s completely changed my life and allowed me to live a full life. At time of diagnosis, I couldn’t even dress myself from the debilitating pain."

10 / 10
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103 Report
  • Mtbik...
  • Taken for 1 to 2 years
  • May 30, 2020

"I have been on Benlysta for two years and it was helping my Lupus. BUT, recently, it started to give me depression, anxiety, and I thought about ending my life. I ended up in a Psychiatric hospital last week. After that, I started looking into my medications. If you have any history of any mental illness, please be careful!!"

1 / 10
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74 Report

Frequently asked questions

  • Jalpu...
  • January 25, 2014

"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 God send 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 leave me a hefty 800.00 balance each moth. I'm on disability and cannot afford this expense."

10 / 10
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135 Report
  • Ren
  • Taken for 6 months to 1 year
  • June 8, 2020

"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!"

9 / 10
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65 Report

Are you taking this medicine?

  • Brute
  • Taken for 6 months to 1 year
  • July 13, 2021

"I'm on the autoinjector form of Benlysta. Unlike all the other reviewers, I don't think the injection is in any way painful. Leave the injector out of the fridge for a couple of hours so it can warm up. Let the alcohol wiped area dry before injecting. I inject in my upper thigh and feel no pain if I've followed my above rules. I've been on Benlysta now for 9 weeks and I'm not feeling a huge improvement but I have been able to get off prednisone. I'm going to give it a full 12 weeks before I get discouraged. My lupus is causing terrible brain fog, fatigue, joint and muscle pain. Blood work is still pretty bad but I'm not giving up just yet. I haven't noticed any side effects."

5 / 10
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48 Report
  • Summe...
  • Taken for less than 1 month
  • May 8, 2023

"I just started taking autoinjections - 2. I wanted to post a review right away to let people know that these injections DO NOT HURT. I read so many reviews that said the pain was so bad and it's not in any way. I let the autoinjector sit out of the fridge for 90 minutes to make sure it wouldn't be cold and both times injected my abdomen( on opposite sides). I've had absolutely no side effects so far. And, of course, no improvements yet in such a short time. I just wanted to stop someone from having the same fear I had after reading all those bad reviews on pain. Good luck - it's easy - you can do it!"

10 / 10
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18 Report

More FAQ

  • Achy...
  • Taken for 1 to 6 months
  • October 16, 2019

"I have no problems with giving myself injections but Oh My the medicine that goes in my leg burns soooo bad. I compare it to either multiple bee stings in one spot or just putting a match on my leg. Why does it hurt so bad?? Am I the only one?"

5 / 10
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54 Report
  • Anonymous
  • Taken for 2 to 5 years
  • May 10, 2019

"I started the Benlysta infusions in Sept. of 2016 after being diagnosed with SLE (systemic lupus erythematosus) in Sept. of 2015. It took about 8 months for the infusions to work and actually make me feel better and my labs normal. After 1.5 years on infusions I started the self infections at home due to blown veins at each infusion. The only side effect I've had is very consistent weight gain. Since starting my Benlysta journey I've gained 30lbs with no end in sight."

9 / 10
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56 Report
  • Strix
  • Taken for 6 months to 1 year
  • September 16, 2019

"I've had mild to moderate SLE for 17 years; been on plaquenil for most of that time, and for the past 8 years I've been getting a quarterly steroid injection. During that time I'd feel mostly okay joint-wise for two months then start to go downhill until the next injection. Definitely a roller coaster existence. Other treatments (methotrexate, Embrel) didn't help. I started Benlysta about 7 months ago, and the difference in my energy level is astounding. While I'm not my old self, I can at least see a reflection of my old self. It hasn't helped my joint pain much, but I'm able to do regular exercise again. My social life has also picked up because I'm not exhausted after work every day. I get rashes at the injection site (I take the weekly injections), and the shots feel like a wasp sting, but they are worth it."

10 / 10
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50 Report
  • Bon
  • October 27, 2016

"I was diagnosed with Lupus (SLE) in 1984, when I was 19 years old. I have fought it with other medications (Plaquenil, steroids, etc.) my whole life, but always living with the symptoms. My ANA Titer counts had never got below 640, and there were times when it was out the roof (when it should be less than 40); and of course, the higher it got, the stronger my symptoms became. At the time I started Benlysta, my ANA was at 680. After over 2 years on the infusions, my ANA has been registering 39 and 40 - nearly normal. My symptoms are all but gone, I function at a much higher level. Other than an occasional slight "icky" feeling after the injections, I've had no side effects that I am aware of being attributable to Benlysta."

10 / 10
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72 Report
  • Deena...
  • Taken for 6 months to 1 year
  • January 29, 2018

"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 & 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 my self 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."

8 / 10
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62 Report
  • PAC
  • Taken for 2 to 5 years
  • August 25, 2020

"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 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 wheelchair . Only need walker if I overdo it . The swollen painful joints are gone, the energy significantly improved (unless I overdo it). I am still careful to respect my physical limits and avoid my triggers ."

9 / 10
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38 Report
  • Doxie
  • Taken for 5 to 10 years
  • August 22, 2018

"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."

10 / 10
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50 Report
  • ToniJ...
  • April 14, 2015

"I have suffered from lupus for 4 years now. I started Benlysta a little over a year ago and what a difference. I could barely walk or get out of bed before treatments. My feet and knees would swell with no relief. Since I started Benylsta I am getting my life back on track, I can now walk, run and exercise regularly. I have had few severe flares. I would recommend this drug to anyone. It is expensive I started out in a trial then I was lucky enough to get a grant that now pays for my treatments."

10 / 10
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71 Report
  • Jojo
  • Taken for less than 1 month
  • February 12, 2020

"I have severe SLE, having been diagnosed over 15 yrs ago. I’m currently on plaquinil, steroids and Cell-Cept. I have lived with severe pain in my joins 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 do 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."

7 / 10
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38 Report
  • Tamara
  • November 16, 2015

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

7 / 10
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58 Report
  • GERDed
  • Taken for less than 1 month
  • September 13, 2012

"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. "

8 / 10
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72 Report
  • Sasha...
  • April 22, 2016

"HI, I have just had my fourth infusion of Benlysta. My feelings on this drug are mixed so far. I really hate the thought of pumping something into my veins that may or may not damage some other part of my body or kill me; but sometimes you have to get past your fears and pray for the best outcome. I've heard that a positive outlook can be 80% of the healing process. I was diagnosed with SLE in 2002. I started on plaquenil and steriods. Over the years I have been on medications that were later recalled due to multiple deaths. That really makes you think and feel as though you are the drug company's guinea pig. We will see what the next few treatments do and I'll update this review. So far no adverse side effects."

5 / 10
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53 Report
  • Rock
  • Taken for 1 to 6 months
  • March 9, 2022

"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 afterwards. 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 able to justify / pay my $9,000 deductible with accruing debt. The program approved me within a hour of filling out a 15 minute online application. So to anyone who thinks they can't afford it, look into that program!"

10 / 10
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19 Report
  • Beach...
  • Taken for 1 to 6 months
  • October 25, 2014

"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 half hours. I experienced nausea and an 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."

6 / 10
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57 Report
  • Diane...
  • May 3, 2016

"I have been on Benlysta for seven months now and it's really helping with the fatigue. I finally feel like I can get up and do something on my days off of work. I'm in the medical field and really don't want to end my career yet. As far as the joint and muscle pain it's still there unfortunately. Maybe it will get better soon."

8 / 10
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50 Report
  • Rose...
  • Taken for 1 to 6 months
  • September 6, 2016

"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."

1 / 10
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47 Report
  • smc
  • Taken for less than 1 month
  • October 29, 2018

"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 oralTylenol 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."

7 / 10
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36 Report
  • Deb...
  • Taken for 1 to 6 months
  • February 27, 2020

"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."

4 / 10
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29 Report

Reviews may be edited to correct grammar/spelling or to remove inappropriate language and content. Reviews that appear to be created by parties with a vested interest are not published. This information is not intended to endorse any particular medication. While these reviews may be helpful, they are not a substitute for the expertise, knowledge, and judgement of healthcare professionals.

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