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User Reviews for Benlysta

The following information is NOT intended to endorse drugs or recommend therapy. While these reviews might be helpful, they are not a substitute for the expertise, skill, knowledge and judgement of healthcare practitioners in patient care.

Condition Avg. Ratings Reviews Compare
Systemic Lupus Erythematosus
7.7
   
25 reviews 97 medications
Summary of Benlysta reviews 7.7 25 reviews

Reviews for Benlysta

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For Systemic Lupus Erythematosus "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

Doxie (taken for 5 to 10 years) August 22, 2018

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For Systemic Lupus Erythematosus "I’ve been back on Benlysta for 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."

   
8.0

SmilesBehindLupus (taken for 1 to 2 years) May 17, 2018

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For Systemic Lupus Erythematosus "I was diagnosed with SLE, RA and sjogrens 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 too. 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."

SUM April 19, 2018

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

   
1.0

Dm (taken for less than 1 month) April 9, 2018

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For Systemic Lupus Erythematosus "I started benlysta 4 months ago for my SLE. I have been on plaquenil and prednisone for 10 years and for the first time ever, I was able to taper off prednisone as of yesterday. The infusions have changed my life. I am not in constant pain. I am so so very thankful to feel almost normal most days....However, this last months infusion, I am still having joint pain... I read that someone else had this experience... where they worked every month except for one. It makes me wonder if there is room for error in administering the drug. I do see that the nurse mixes the drug and must wait for it to be fully dissolved. I feel so different this month than the previous 3... almost like the drug wasn’t infused at all."

Shellc3 February 9, 2018

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For Systemic Lupus Erythematosus "I have tried every medication for Lupus and have had no luck until Benlysta. I have been doing the infusions for 7 months and am so very grateful. Pros: improved joint pain, muscle aches, skin rash, and energy level Cons: only one month it did not work, and all other months it has worked for three weeks and my symptoms come back the fourth week, but I am still grateful for having it."

   
9.0

Snapdrag0n (taken for 6 months to 1 year) February 2, 2018

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For Systemic Lupus Erythematosus "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."

   
8.0

Deena Marie (taken for 6 months to 1 year) January 29, 2018

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For Systemic Lupus Erythematosus "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 reduced my Vicodin for breakthrough. This month is my first on the new Sub Q injection and I’m dying. First it took awhile to get approved via insurance. I️ started these “behind” in pain and after 3 weeks I’m no better. I️ plan on discussing with my Dr in the next week or two. So my rating is for the infusion NOT the weekly injection."

   
9.0

Fla Lisa November 16, 2017

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For Systemic Lupus Erythematosus "Dx with SLE at age 40, after years of searching for a reason why I was feeling so awful. Treated with plaquenil and Arava for years, with positive results. But, recently started to have hearing issues and less relief then in the past with joint pain and stiffness. So, my rheumatologist offered me Benlysta as an option....had first infusion on 6-22-17. Felt tired after infusion, went right home had dinner and went to bed for around 8pm. Woke up in the middle of the night with an awful migraine ( which last 3 days)....also felt just "run down ". Having 2nd in fusion in another week...hoping for no headache this time."

   
5.0

Mac287 (taken for less than 1 month) June 28, 2017

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For Systemic Lupus Erythematosus "I have SLE and have been on Benlysta for 1-1/2 years now. I could barely walk or function prior to my diagnosis, SLE Lupus, RA and Hoshimotos. I felt better during the first 3 months of infusions than I do now. I had one really bad 3-month flare this year but my rheumatologist kept on top of it. I felt the drug go through my entire body for the first 8 infusions. No kidding. Lightheaded, metallic taste in my mouth and a little woozy. I always drove myself to and from infusions and went directly home to rest afterwards, as it made me very groggy within a hour. If you are sensitive to drugs, have someone drive you. I experienced diarrhea a few hours after infusions for the first year. You must take an antihistamine before being infused."

   
10

Lupie13 October 27, 2016

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For Systemic Lupus Erythematosus "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

Bon37 October 27, 2016

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For Systemic Lupus Erythematosus "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."

   
1.0

Rose R (taken for 1 to 6 months) September 6, 2016

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For Systemic Lupus Erythematosus "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."

   
8.0

Diane Cheryl May 3, 2016

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For Systemic Lupus Erythematosus "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."

   
5.0

Sashapot April 22, 2016

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For Systemic Lupus Erythematosus "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."

   
7.0

Tamara1987 November 16, 2015

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For Systemic Lupus Erythematosus "I wanted to wait sometime before I weighed in on my Benlysta infusion experience. Just had my 8th infusion, what I've noticed is less cutaneous/skin involvement. I still have joint pain, although not as severe. My autonomic nerves have also been affected by Lupus, I see no relief there; still lose consciousness because of random sudden blood pressure dips. I know Benlysta is working because I'd hate to see what shape I'd be in without it, especially with having three types of Lupus (SLE, Tumid and Discoid Lupus)."

   
9.0

MzTCopon (taken for 6 months to 1 year) September 11, 2015

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For Systemic Lupus Erythematosus "infusion #2 and my joint pain and swelling went down almost immediately. I think I have finally FINALLY found the answer for me!"

   
9.0

DaniBev June 8, 2015

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For Systemic Lupus Erythematosus "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

ToniJohnson April 14, 2015

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For Systemic Lupus Erythematosus "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."

   
6.0

Beachcats (taken for 1 to 6 months) October 25, 2014

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For Systemic Lupus Erythematosus "I have had incredible results, but at week three I come down hard, the good effect did not last the entire 4 weeks."

   
8.0

PaGaPo June 29, 2014

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For Systemic Lupus Erythematosus "Worked very well, controlled symptoms and put me in remission. Felt like I did 20 years ago - pre SLE and Siscoid Lupus diagnosis! I had a serious anaphylaxis reaction after my 3rd infusion from not being premedicated by my previous rheumatologist. Changed physicians and continued treatment with pre-medication of Benedryl and Solumedrol in i.v. It worked for 5 treatments and then I had a reaction a 2nd time and was removed from the infusions. Doctors say had I been premedicated from the very beginning, I more than likely would not have had a reaction. My remission is now over and I am worse than prior to Benlysta treatment. Benlysta co-pay program paid for 100% of my deductible, as well as $7,000 in co-pays each year"

   
10

OmaLaura (taken for 1 to 2 years) April 29, 2014

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For Systemic Lupus Erythematosus "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

Jalpurnia Trader January 25, 2014

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For Systemic Lupus Erythematosus "This medication has been a life saver for me. Even though I do have some very minor side effects, I wouldn't dare think of changing it!!!"

   
9.0

Gr8tobwth (taken for 1 to 2 years) October 26, 2013

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For Systemic Lupus Erythematosus "I have been using Benlysta since April and it is doing wonders for me. Some mornings I tried but couldn't get out of bed but not any more. I sleep well and have energy. My only problem is the weight gain. I started with every two weeks for 2 months and then once a month. When I just started the medication I used to feel a funny feeling in my mouth, not anymore."

   
7.0

Quennieflowers (taken for 1 to 6 months) August 8, 2013

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For Systemic Lupus Erythematosus "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. "

   
8.0

GERDed (taken for less than 1 month) September 13, 2012

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