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Comment from: Frawlsco45-54on Treatment for less than 1 month Published: February 26

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.

Related Reading: fatigue | vertigo | muscle spasms

Comment from: 45-54on Treatment for 2-5 years Published: January 31

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.

Related Reading: benlysta

Comment from: cccccasssss19-24on Treatment for 6 months to - 1 year Published: March 20

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!

Related Reading: lupus | benlysta

Comment from: Mamajude45-54on Treatment for less than 1 month Published: December 02

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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Medical Editor: John P. Cunha, DO, FACOEP

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