Benlysta Side Effects

[purejoy]

I had my first Benlysta Infusion last Tuesday and a few days later I began having fevers at night and early in the mornings. I also have crushing pain in my neck and chest. I'm thinking that I shouldn't take the drug again. Has anyone else had this or similar symptoms and did it get better allowing you to continue with the treatments or is this a sign that my system can't tolerate the medication?

The nurse practitioner said that I would have to take tylenol for the fevers and that the chest and neck pain maybe Esophagitis and that I would have to ride these symptoms out until they go away.

Thank you.

[Paprika60]

Hi, I am assuming you mean the weekly self administering Belimumab jab. I have been on it since April this year. Before that I was on the monthly infusion done at the hospital for nearly a year. As I was always given premed before the infusion, I always take paracetamols 30 minutes before I do the weekly shot. It took me some months before I noticed any benefit and indeed I did have two wobbly occasions, one of which I ended up at the hospital for observation and tests including CT scan. My Rheumy told me to stick with it with patience as it takes time. My suggestion is that you contact your specialist first and discuss. Wherever you are, it would have taken quite an effort for your doctor to manage this prescription for you as it isn't easily available to all lupus patients. So I wouldn't give up right away. But do discuss and make sure to take paracetamols beforehand every time. And I also suggest not consuming any alcohol that day. The weekly dose has worked really well for me. Much better than the monthly infusion. It is the same therapy and yet it has made such a difference.

Good luck. 😀

[purejoy in reply to Paprika60]

Hi Paprika60, thank you for your reply. I have had just one infusion and the very next day all of my joint pain was gone. Unfortunately, I have nightly fevers, neck, chest and back pain and depression. I am so disappointed because It's been a long time since I haven't had swelling and pain in my hands and shoulders, but I can't tolerate the side effects and I don't know how long the side effects will persist after I stop the treatment.

Thank you so much for taking the time to share your experience.

[Paprika60 in reply to purejoy]

I am so sorry to hear that the pain is so much for you. Interesting as I didn't experience any positive thing so quickly. It was very very slow acting for me. Are the side effects you are experienced listed as such? I do hope your Lupus doctor can help you decide the right path for you. I will keep my fingers crossed for you! All best wishes! 🙏

[purejoy in reply to Paprika60]

Yes, the side effects that I'm experiencing are side effects of Benlysta. I seem to be predisposed to having difficulty avoiding the side effects of drugs. It runs in my family. My doctor called this morning with some instructions to help my current side effect symptoms and I will no longer be able to take Benlysta. I made the decision primarily because I don't want to live with the depression and anxiety. I'm disappointed that this treatment didn't work out for me but I won't give up.

Thanks so much for all of your well wishes.