benlysta

Hi, !

First off, my apologies for not answering your question more quickly! I somehow did not see your post, so again, sorry for the delay.

I don't think your question is odd at all. So, I do have some questions about your flares. How quickly do they come on and how long do they last? I know you mentioned they seem to occur a few hours after an infusion, but is it like a slow build or like all of sudden the symptoms are just *there*?

While experiencing a full one flare after infusion is a little unusual, feeling a little 'off' or slightly ill or tired is not all that unusual. I don't know how helpful this information will be for you, but I like this peice from one of our contributors with tips for Benlysta infusions. I bet you may already be doing some of these things, but I wanted to highlight that it's not unsual to feel a bit off the day following an infusion -- https://lupus.net/living/tips-benlysta-infusions.

Aside from the flare issue, do you feel like Benlysta is working well for you overall?

Also, if you feel like Benlysta isn't a good fit for you, don't be afraid to speak up and let your doctor know.

I hope this helps!

Best, Erin, Lupus.net Team Member.

Hi Erin,
Thank you for responding ! Actually towards the end of the infusion i start to notice the symptoms and they last for days..it could be coincidental that i actually just happen to be flaring around the time i get my infusions every month, but it’s like once the infusion is almost done i will start to feel the flank pain, feeling my heart as it beats against my chest wall, mood symptoms, joint pain these symptoms start towards the end of my infusion and increase as the hours past afterwards ending with sleeping for maybe two hours and then insomnia the rest of the night. My lab numbers stay within the same range from what i see but i haven’t taken an extensive look as i’m not a doctor and really wouldn’t know what to look at to actually see if benlysta is helping. Symptoms wise it hasn’t stopped my flares that happen right before my period and right before ovulation. It’s like the infusion reactivates my hormones and cause me to reflare but i could be wrong i hope so. I feel tired mostly afterwards from the benadryl they give before infusion. Also i have bad veins, so a few times the nurse administered at a higher rate in case the catheter slipped out she wanted to make sure it didn’t risk me having to come back for my infusion or have to restart another iv so i don’t know if the faster rate ignited anything by faster rate i mean she opened the iv line and let it infuse.. overall it infused for about 20-30 minutes versus the normal hour … sorry for the long post … i asked my doctor he only says he’s never heard of benlysta giving that adverse effect

I was in the follow up drug studies to make up for lack of women of color. I had a bad reaction my first iv treatment. I called and said I wsa going to ER where they had to report bad reactions so could the lupus doc call ahead and explain...They were so afraid of me reporting a bad reaction that they told the ER I just had the flu and was a compulsive liar....ER did believe me and trated as bad drug reaction. I never went back to that doctor again. She ws president of the Florida Lupus foundation at the time back when the foundation support groups were still segregated by race.

I was on Benlysta for approx. 6 weeks via self inject. After each injection I would have severe debilitating worse than migraine headaches. I have a history of Migraines so initially I thought it was a regular migraine until I saw they were lasting for more than 12 hours with no relief with taking my Migraine headache medication. I held the next week dose and made the Neuro doctor aware and he called my Rheumatologist. I was so hoping that Benlysta would be the answer to helping me with the Lupus. Now I am back to having flares rather often. I have a new Rheumatologist and she is going slow with me as far as meds are concerned. Will see what is to come.