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3.7 Overall Rating

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Most voted positive review

51 People found this comment helpful

I was diagnosed with SLE 20 years ago and have never been in "remission" since. I have had times that were worse than others with a SIGNIFICNT flare every 10 years- on the nose. The mix of Cellcept, methotrexate, steriods, Plaquinil and a variety of other juicy meds have lead me to live a relatively normal life, barring the 10-year flares. This last flare was by far the worst with both pain, ...

Most voted negative review

4 People found this comment helpful

The facility administering the benlysta was excellent. However, after an yr and a half I found absolutely. I change except for being more susceptible to infection.

Shared reviews and ratings

Brooke | 19-24 | Female | On medication for 6 months to less than 1 year | Patient
11/1/2019
Condition: Systemic Lupus Erythematosus
Overall rating 2.0
Effectiveness
Ease of Use
Satisfaction

The reason I started this drug was to help with my chronic malar rash, joint and muscle pain, and fatigue. I was hopeful the medication would do well, but after taking benlysta subcutaneously for 8 months I have seen minor changes. While my rash is less noticeable, it is still present. My issue is the constant brain fog and forgetfulness. It is almost like looking in from the outside of my life. Very strange. I became depressed, detached, anxious, and pretty much a different person. As a full time college student, it is not worth it for me to take if I can't really focus in class or remember small details. I took benlysta subcutaneously and boy do those injections hurt. It made me nervous everytime I had to inject myself because it burns so bad as the medicine is going in. I would bruise after every injection, and get leg pain and muscles spasms for the following couple of days. One benefit I did see was a burst of energy immediately after I injected myself, but it was almost like a feverish energy where I would get super sweaty and seemingly over exert myself and then the energy would soon go away and the extreme fatigue returned. I currently take methotrexate subcutaneously as well and it is much easier for me to inject myself with a needle, and much less painful than Benlysta. Benlysta didnt work out for me but I think it is worth a shot for lupus patients because of the limited number of treatments available.

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cccccasssss | 19-24 | Female | On medication for 6 months to less than 1 year | Patient
3/20/2019
Condition: Systemic Lupus Erythematosus
Overall rating 5.0
Effectiveness
Ease of Use
Satisfaction

I have had severe lupus for about 4-5 years now. I just started benlysta about 6 months ago. This has been the only thing that has actually helped me! The first few months were rough. I would feel bad the day after I got the infusion but now that I am on my 6th month, I hardly ever feel bad. I have so much energy and my joints never hurt! If you stick with benlysta it works! Like I said the first few months aren't the best, but if you give it time it works wonders!

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Mamajude | 45-54 | On medication for less than 1 month | Patient
12/2/2018
Condition: Systemic Lupus Erythematosus
Overall rating 3.3
Effectiveness
Ease of Use
Satisfaction

I hesitate to review, as I have only had 1 treatment. I am hopeful that this med will change my quality of life. My main discomfort with the infusion was I could feel a burning up my vein and my arm ached. I believe they are going to dilute and give it slower next time. After the infusion, I was exhausted. I slept for 2-3 days. I'm back to my lupusy self now. I'm cautiously optimistic that this med will do great things. I will review again in a few months ❤️

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Frawlsco | 45-54 | On medication for less than 1 month | Patient
2/26/2018
Condition: Systemic Lupus Erythematosus
Overall rating 1.0
Effectiveness
Ease of Use
Satisfaction

Immediately following my first infusion I had extreme fatigue and couldn't stay awake. I literally slept for 3 days.. woken by family in between to eat. Then terrible pain in my thigh which spread to all of bones and joints. Agonizing pain .. pain meds took edge off but it was terrible. Blood test revealed elevated SED and was started on solomedrol which helped with bone pain. Then came severe vertigo . Still extreme fatigue and now my muscles are in pain like muscle spasms.i was hopeful this would make me well .. I have been through 3 weeks of hell and wouldn't take this again. For some it's a miracle drug. I'm still waiting for my miracle drug.

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Anonymous | 45-54 | On medication for 2 to less than 5 years | Patient
1/31/2017
Condition: Systemic Lupus Erythematosus
Overall rating 4.7
Effectiveness
Ease of Use
Satisfaction

After 1 year I was able to wean of steroids. Joint pain is almost totally gone. Quality of life is greatly improved. Only side effect has been occasional migraine after infusion however slowing the drip rate of infusion and extra fluid with treatment seems to have that under control. It took a year for Benlysta to really kick in for me.

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