I just wanted to share with you all that I am getting my first Benlysta infusion this Thursday. My dr has been trying to get me on it for over two years but we couldnt find a facility that would do it. I got word last week that the paperwork went through and my insurance is covering it 100%! My dr warned me about getting too excited, as it is not a cure all. But I am hoping and praying.
Can any of you tell me how you would feel afterwards? I was just wondering if it will make me feel as rough as methotrexate used to.
Oh, and after having my file for 18 months the damn appeals council refused to look at my disabiliy case. So, on Friday I get to go meet a new atty that will help me file a civil appeal in fed court. And the government wonders why people hate them..... Go figure.
Hi Wendy I’m having my first Benlysta Treatment today. I don’t know what to expect either. oh we’ll nothing’s really changes with disease anyway lol. Good luck let me know how yours go. Take care Vicky
I did 4 treatments of Benlysta about a year ago. Didn’t really see any change. I did have a lot of itching and a few nightmares afterwards. But again everyone is different so good luck and I hope it does work for you. Take a book or something to keep you occupied while getting treatment. Takes about an hour or a little longer to infuse medication. Just like getting an IV.
I had benlysta infusions for over a year and then my life sort of got in the way. I kept getting uti’s or my son would get sick so I had to keep canceling my appointments. Well I haven’t had an infusion in about 4 mos now. I feel awful now. I hope to be able to go back on it. When I was getting them I did notice some changes like I wasn’t freezing all the time. I would get headaches for the first few days after infusion and three days after the infusion I would spend the day in bed with horrible joint pain. But soon realized it was from the steroids they give you before the infusion. So I would taper down from a higher does so it stopped happening. I’m realizing now the difference between this summer and last summer with infusions. Last year I did so many things I had not enjoyed in years. I felt well enough to take short trips and take my kids to the beach. Enjoy spending time with friends. My family and friends commented on how good i looked all the time. This year I have little energy to do anything. When I do venture out I feel horrible and end up exhausted. The one trip we took to the beach was fun but I spent 3 days paying for a couple hours of fun. I know everyone is different but hindsight is telling me that it was a good drug for me.