Thank you for the info. I already have migraines and fatigue so hopefully it won’t get worse. Best wishes to you!

I've been on monthly Benlysta IV for 3 years or so. I know it has helped me reduce the frequency and the severity of my flairs as well my kidneys functions tests have stayed within normal limits. The only side effects I have is migraines & fatigue which for me is tolerable. Oh and I am also taking Hydroxchloroquine.💜

Hi NO3113
Appreciate you sharing your experience.
Benlysta isn’t on our pbs here in Australia so if we were wanting to try would have to pay thousands.
I have always wondered about it. After your comments just now I will be waiting. Like you rheumatologist puts me on one thing. It helps some things and aggravates others. That doesn’t work anymore so we try something else.
Had trouble with my employer too back awhile.
Same as you right idiot.
So I left with my little bit of savings sold up home and all to restart and try and get health more balanced.
So yeah thanks. I feel less alone again now. 🥰💜🌸

I was on Benlysta for a while when my Lupus flared up. (also on Hydrochloroquine, and I was on prednisone for the flare until we started up Benlysta) Unfortunately, we didn't get the results we had hoped for.

So with Benlysta you have two options - you can choose to do injectables at home every 2 weeks I believe it is. Or you can do infusion. I choose infusion because I have some medical trauma - and there's no way anyone can deny I was getting my infusions when my butt is in the infusion chair and the staff have to do the IV line etc.

So... I had to pre-load my benlysta infusion with benadryl. If I didn't I would get migraines. But the benadryl helped stop that. I did feel tired following my belysta infusion and that infusion time was like almost 2 hours... After the initial load up period and I moved to monthly maintenance, I let my employer know that I would be out once a month for this.

I did have some GI issues - loose stools. I worked from home so that was easy to manage. But I also had the worsening of anxiety and depression. I had a few breakdowns - worse the week following my infusion. I didn't get the suicidal thing, but it was bad enough to be disruptive. I actually quit the job I was working at because I was dealing with major anxiety - and they sucked (no really my boss was an idiot) and I was fortunate enough that I could take some time off work to sort some of the things out and take it easy.

Not everyone gets these side effects - but this was my experience.

I think it was maybe 6 months on it... while some things were better, I was still having my rash on my face and arms. during this time I had a few joints get angry on me that caused me mobility issues. I had to get a shot of cortisol in my knee. We determined I wasn't getting enough benefit from it. And so we waited for Saphnelo that has just been approved to try.

Saphnelo worked wonders for my skin and joints... but not the thrombocytopenia (boo)

Do you know what the drug trial would be?

Some definitely find it helpful for fatigue and pain, Hannah, and there's newer evidence that it may help lupus kidney disease. Suppose you don't have organ disease and primarily have joint pain and inflammation. In that case, you might ask your rheumatologist about NSAIDS like naproxen, motrin, etc., as those don't suppress your immunity, leading to infection risk, etc.