lupus meds

[Sun19shine]

anybody got experience of Belimumab (Benlysta)

I’m just starting on this

[nora123456]

Hi Sun19shine,

I had my second infusion today, but my first one was really rough. I felt completely drained—worse than my usual lupus fatigue. My body felt heavy, weak, and achy, like I was in a bad flare.

I am not sure if this just my body trying to adjust to a new treatment, or if I am simply not tolerating it well.

Wishing you the best of luck—everyone reacts differently, and I know belimumab has worked well for some people.

[Sun19shine in reply to nora123456]

Thank a lot for that

Appreciate it

[Mooncat111]

I have had monthly infusion of Bellimumab for nearly two years and it’s been life saving for me. The first few months I felt a bit fluey with stomach cramps for a couple of days after the treatment but not too bad really given the pain I’d been going through with the lupus. and now, fingers crossed I don’t get any significant side effects. But I’ve gone from constant lupus flares and hospital stays that involved pancreatitis, complete loss of hair, head to toe weeping open skin sores, loss of taste and smell to feeling like a different person now. I’m not on steroids anymore. Obviously everyone’s experience is different. It will work for some but not so well or at all for others and I have been very lucky to get such good results. I do hope it’s as helpful for you x

[Sun19shine in reply to Mooncat111]

So glad it’s helping u

Thanks for reply

[Guatmom]

I’ve been taking the self injections for over a year. Stings when injecting, but no pain as soon as it’s finished. Benlysta has helped my joint pain and has kept me flare free. That is impressive given this has been a stress filled year like no other. My rheumatologist recently retired. I’m hoping my new doctor will let me continue to use it.

[Sun19shine in reply to Guatmom]

Thanks for ur reply

Much appreciated & Hope I can feel better like u after a horrible spell

[Lazingaround]

I just found this site because of your post- thank you. I have just started my 3rd week of self injections. Between 6 months of hydroxycloquine and this new medication I have no idea if I am better with my lupus symptoms. If I do much more than an hour event, I’m dizzy and weak needing a rest. My dr. Told me my dizziness is not the medication and it makes sense.