I’ve had no success with methotrexate and azathiroprine so the dr wants to start benlystia infusion…has anyone had it and how’d it go?
I know 2 people currently on Benlysta. Well, one just had to stop due to bad reactions to it. The other person is doing great on it. I think it's one of those things - certain meds work better for certain people. I am loving Methotrexate, but it didn't work for you. You won't know unless you try. Hope it works great for you!
I’m willing too try just about anything!! Lol! I hope I have good results! Methotrexate made my liver enzymes go way up and white blood cell dangerously low:( I can’t wait!! I’m sooo hopefully!! Thank you
I went for benlusta infusions and did for sbout 6 months and I had to stop. After every infusion I was sick throwing up, diarrhea, flushed face, u basically couldn’t get out if bed. At first it was just after the infusion but then it started to happen during infusion. But everyone can be different and it may work.
My doc is talking about Benlysta too, but I'm on the fence. I want to wait as long as possible to see if the MTX injections will work - then infusions if the injections don't do it. There is still another drug or two for me maybe. This is a good post for all of us can check the status on how this drug is helping or even maybe not helping. Thanks for posting it!
I am on benlysta , just did my 4th infusion yesterday . i am seeing little results, seems more and more everyday. its a very serious drug i would do as much research on it and weigh your pros and cons . i was at the point where i would try anything. i currently take methotrexate 25 mg a week<----no error 25mg. Plaque 2x day. celebrex 200mg prednizone 30mg day imuran 100mg day Mobic 15mg day folic acid. i have also done the myers infusion with i had seen some pretty good results i just couldn’t afford it after my last back surgery , not sure if you know about myers or have tried it. but with our disease we are all snow flakes all different . i wish best of luck to you , keep us updated on how you fair with benlysta .
I saw my doc 2 days ago and he is adament about me going to the hospital. BP ^ then BP so far low he doesn't want me to drive. Please let me know how it works for others.
Goof luck Deanne
Thanks for the reply everyone! It sure helps me out and gives me a lot too think about! I wish that I would have been able too tolerate the metho! My liver enzyemes went way up and white blood cell count went way too low:( im doing good on the aza with no side effects but the numbers aren’t improving so I guess it’s time too add the benlysta???
I’ll do some research and keep yall posted…thanx again and I hope you all have a good day
I have systemic lupus and have been on benlysta for over a year now. It is by far the best of all medications I have tried before. I tried everything available from plaquenil to methotrexate …you name it! Plaquenil was the mildest for me but I felt like it really wasn’t doing much. After some time on benlysta, my skin has cleared up, my hair is growing back and I haven’t had any flare ups. However, each patient is different, but what I’ve learned about lupus is the whole experience is trial and error. This just happened to be right for me after many wrong ones. Hope this helps. Good Luck!
i have been taking it for about 7 mths first 2 treament felt better after that no difference ugh im gonna to be having 1 more then bloodwork good luck
I had my fifth benlysta a week ago, and i am starting to get some quality of life back. Not a cure, but my endurance is increasing and pain decreasing. Not a cure (yet) and have ebbs and flows, so you just need to give it a chance. At the start i would feel fantastic for a few days and then plummet with a string of horrific flare-up days, but it seems to be taking hold now and turning a good corner…knock on wood. From the research I’ve done, the side effect trade off is much better, IMHO, than any of the other lupus drugs.
I will have my third treatment on Jan 22cn its very early to tell if its working or not. Crossing fingers it works for me
I have been on benelysta since April 26,2012 …And it has been a outstanding change in my health I have more better days than ever.Its the best treatment for lupus I would recommend it to help a lupus patients…I wish everyone best wishes and luck on your journey with benelysta…
Love Kimmi
I’m still waiting for the dr too get the ok from my insurance then I’ll get going;)
im crossing my fingers!! I just want some relief!! Its helpful too here your experience!!
I am getting ready to be put on imuran and if tolerated will start benlysta too. The dr told me the benlysta is 40k a year and since medicare will pay 32k i was lucky to receive a grant from the lupus foundation to pat the difference if anyone is having problems paying for there meds i highly recommend to contact the healthwell foundation they are the ones that got me the grant from the lupus foundation. Good luck
I started Benlysta 4 weeks ago. My doctor told me it could take up to 6 treatments before I see any changes. So far no change. But I have high hopes that it will work. Good luck!
I posted a reply on this last week, but looks like it didn’t take or got erased. I’ve had five Benlysta infusions so far, and it is working. I am starting to get some quality of life back. Side effects are minimal and only seem to present immediately after and then go away after a day or so (sore throat, grogginess). My pain is decreased and endurance increased. The first few treatments the lupus came back fighting against it and leveled me, but this has gotten better with subsequent treatments. Knock on wood, but i think the Benlysta is winning over my “fighting” antibodies. I am more hopeful than i have been in 20 years of struggling with this nasty disease. I hope Benlysta is the miracle I’ve been waiting for.
Oh, wait…just found my other reply. The interface for this site is just a bit cumbersome on my phone. Oh, well…i gave feedback twice. Hope it helps! 
I am so glad I found this discussion! I went to my Rhumy Friday and she gave me the info on this medicine to look over. I have tried the methotrexate and everything else to no avail. She says that her patients that have gone on this have shown significant improvement! (Wouldn't that be wonderful!) So I'm glad I could find other folks in my position. I'll keep checking back to see how everyone is doing. I feel so blessed to be able to come to this site and know I'm not alone in my battle :-)
And God Bless everyone of you!
@bluesgirl
I’m new too this site also and feel the same way! Not alone! I wish u luck and will be checking this frequently!
Take care…amber