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.
Learn more about Benlysta.
Reviews for Benlysta to treat Systemic Lupus Erythematosus
Review by Beachcats (taken for 1 to 6 months):
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.
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October 25, 2014 4:35 AM
Review by PaGaPo:
I have had incredible results, but at week three I come down hard, the good effect did not last the entire 4 weeks.
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June 29, 2014 7:37 PM
Review by OmaLaura (taken for 1 to 2 years):
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
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April 29, 2014 3:37 AM
Review by Jalpurnia Trader:
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.
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January 25, 2014 4:02 PM
Review by Gr8tobwth (taken for 1 to 2 years):
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!!!
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October 26, 2013 9:15 AM
Review by Quennieflowers (taken for 1 to 6 months):
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.
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August 8, 2013 6:58 PM
Review by GERDed (taken for less than 1 month):
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.
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September 13, 2012 3:57 AM
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