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.
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Reviews for Benlysta to treat 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."
Mac287 (taken for less than 1 month) June 28, 2017
0 users found this comment helpful.
"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."
Lupie13 October 27, 2016
8 users found this comment helpful.
"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."
Bon37 October 27, 2016
9 users found this comment helpful.
"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."
Rose R (taken for 1 to 6 months) September 6, 2016
6 users found this comment helpful.
"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."
Diane Cheryl May 3, 2016
14 users found this comment helpful.
"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."
Sashapot April 22, 2016
14 users found this comment helpful.
"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."
Tamara1987 November 16, 2015
14 users found this comment helpful.
"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)."
MzTCopon (taken for 6 months to 1 year) September 11, 2015
13 users found this comment helpful.
"infusion #2 and my joint pain and swelling went down almost immediately. I think I have finally FINALLY found the answer for me!"
DaniBev June 8, 2015
16 users found this comment helpful.
"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."
ToniJohnson April 14, 2015
21 users found this comment helpful.
"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."
Beachcats (taken for 1 to 6 months) October 25, 2014
23 users found this comment helpful.
"I have had incredible results, but at week three I come down hard, the good effect did not last the entire 4 weeks."
PaGaPo June 29, 2014
18 users found this comment helpful.
"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"
OmaLaura (taken for 1 to 2 years) April 29, 2014
22 users found this comment helpful.
"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."
Jalpurnia Trader January 25, 2014
47 users found this comment helpful.
"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!!!"
Gr8tobwth (taken for 1 to 2 years) October 26, 2013
22 users found this comment helpful.
"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."
Quennieflowers (taken for 1 to 6 months) August 8, 2013
26 users found this comment helpful.
"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. "
GERDed (taken for less than 1 month) September 13, 2012
42 users found this comment helpful.
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- Drug class: selective immunosuppressants