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A MyLupusTeam Member asked a question 💭
Coeur D'alene, ID

Has anyone here taken Benlysta? Any side effects? Are you still on it?

November 15, 2018
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Learn more about the drug treatment mentioned above.
A MyLupusTeam Member

I’ve been on Benlysta infusions for almost three years. It helps with fatigue and joint pain. Very few people, less than 16%, get nausea. That’s my one and only side effect. I use ginger and an anti nausea medication when I feel yucky. Good luck 🍀

November 15, 2018
A MyLupusTeam Member

You have to take it for longer than 6 months to see a difference. I was in a lot of pain the first year. But we are all different ❤️

November 18, 2018
A MyLupusTeam Member

I took about 4 infusions. I had no bad effects!

November 15, 2018
A MyLupusTeam Member

I have been taking the self injections for 8 months and definitely see an improvement! My rheumy says that we have a year to see continued improvement, so I'm very hopeful that things will get better. I take it with 25mg of MTX, spike with sterioid when needed, and all the other 'normal' cocktail. I have experimented with taking both injections on the same day (i did NOT find taht worked well for me!!), the benlysta on Friday and the MTX on Saturday-and have found that my 'best' is MTX on Friday night, Benylsta on Saturday.
The injection is very uncomfortable to me. I numb my thigh for a good half an hour with an ice pack and am very careful to bring the injection to room temp before doing it- it burns pretty intensely if I don't do these things. The next day is my 'day', I get the nausea from the MTX and headache from the Benylsta, fatigue from both-but Monday? It is like I'm a new woman. I truly believe it is helping and we may be able to cut back on the MTX a bit soon. It is made to work with other traditional Lupus treatments, so I don't think I'll ever be totally 'off' the MTX, until I'm in remission- a dream that we all hold dear!!
Over all? I find it to be totally worth the migraine and fatigue, and injection site discomfort. I DO take phenergen most of the week to deal with the nausea from the MTX.

I'll be able to report back as to how much it is helping soon, I think. The specialty pharmacy has messed up my rx and did not ship the injections to me for this week and next- I'm hoping to have them before Christmas.
I hope that it helps you as much as it has helped me- I love doing the at home injection because my Rheumy said that many of her pts reported that the infusion doesn't last the entire month and the last week is miserable. I do premed with benedryl, phenergen, and lots and lots and lots of water, per her instructions.
Gentle hugs and lots of improvement to you!!

November 22, 2018
A MyLupusTeam Member

Almost four months with benlysta having dosis every 15 days. It is a strong med it make feel really really tired for the next 2-3 days i sleep like 12 hours ,also during infusion i always fall sleep. The effects of the medicine take time to happen, only until today i can see some improvement with the medicine but is worth it. Also the first times i took it was strong for my body and make me have more join pain.

November 21, 2018

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