My Experience Yesterday, I finally got my Benlysta infusion. I was 4 weeks late due to surgery, illness and then change in insurance. That was a LONG four weeks. I could really tell I was late. I've been hurting more and so dang tired. But then the days following are pretty miserable. However, I'll take those two yucky days to get three good weeks. I am so grateful that I qualify for this medication and that it helps me! Everything else I've ever tried has given me very little help. So I'm hoping that being back on this, after being off for a year, that I will see the great results I did for the two years I did previously!!!
So for the two days after the infusion I keep my nausea and pain medication close. And plan on not leaving the bed. It wipes me out totally and all I want to do is sleep. I know I should be up and doing something but I just don't have the energy. It's much like getting Chemo. So I must just rest for a couple of days and let your body heal!!
What is Benlysta?!?
For those of you that don't know about belysta it's a monoclonal antibody. It acts by attacking our immune systems and wiping them out. This is essential because with Lupus our immune system is fighting our body. So by wiping it out it can no longer attack our body thus decreasing our symptoms (in theory!)
How is Benlysta Given?!? Whats the Procesure? How Long Will It Take?
Benlysta is give only intravenously. And takes at least one hour. Although the slower you run it the less likely you are to have any kind of reactions (Itchy, nausea, headaches). Mine is run at a minimum of 1.5 hours. Most people will also get pre- medications of Tylenol and Benadryl to also try to prevent those reactions. However, overall reaction rates are low. Most places have you go into a hospital based infusion center. These could be in the hospital, in the rheumatology office or even in the cancer centers. When you get there they will go over your chart with you and do vital signs. Get your iv started or port accesses and get your pre meds given then start your infusion. Then you can read a book, watch tv, or take a nap, whatever you chose to pass the hour to two hours that you will be there while the medication infuses. Once it's done you will have your IV removed and be on your way.
How Do You Feel After the Infusion?
Generally after the infusion for a couple days you will feel pretty run down and "yucky," yes that's a medical word. You may be achey and nauseated and very tired. All that is normal. Normally after a couple days you start feeling pretty good. For me, when I have my infusion on a Friday I usually sleep all weekend and then feel better and have more energy on Monday. And will feel good for about three weeks, until the week leading up to the infusion when I start feeling more run down and more achey again. So, overall I get usually get about three good weeks a month from each infusion. Which for me is fabulous!!
You don't know what a Benlysta is? Or have more questions?
I will attach a link below to the benlysta website below for anyone who is interested.