Benlysta

If you are a Lupie, there is a good chance that you have heard of Benlysta. For those of you who have not heard of Benlysta, I will give you a brief overview. Benlysta has been the only medication specifically developed for Lupus. It took underwent years of clinical trials and endless hours of research. It is intended to be used along with other Lupus medications. Benlysta is a biologic which is given in an Intravenous infusion once a month. There are still some trials being run on it. If you are interested in learning about how Benlysta beneficial in the treatment of Lupus I strongly encourage you to check out there webpage: http://www.benlysta.com/. Personally I have found the videos on the webpage educational as well as the information kit I received in the mail.

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It is essential for me to educate myself about medications prior to beginning them. I began researching about Benlysta a year before I began my first infusion. I read as much as I could about it, watched various videos, and spoke to others on Benlysta. I discussed the things I learned with my parents. I had my heart set on trying Benlysta. When my doctor mentioned beginning me on the medication, I began the paper work without hesitation. Once I got insurance approval I enthusiastically began my loading dose infusions. I got Benlysta every two weeks for three loading doses then went down to once a month.

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Many people recommend eating protein the night before and the morning of the infusion. I get sick if I eat large amounts of protein, therefore I eat about half the amount of protein that other people consume. It is vital to remain hydrated before, during, and after the infusion.

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Before I get my Benlysta I usually get blood work done. Then I get IV fluids and premedicated. Premedication varies from person to person. I take two Tylenol orally and get Benadryl and Zofran in my IV. The infusion it’s self is uneventful though personally I endure a lot of pain during it. (Most people do not experience this much pain. My body likes to be different)

Benlysta takes time to work. Waiting is difficult when you have endure so much pain for a long period of time. Everyone notices improvements at different times. However it is said that one does not get the full benefits until a year after beginning the treatment. I have been on Benlysta for six months now. I am going to briefly share my experience, however I urge you to keep in mind that my health is not stabilized and there are several factors as to why I have not had more benefits from this treatment. I noticed a difference from the start in pain levels. However it was short lived. I only received relief for 5-8 days.Within a few infusions my hair loss drastically got less. After my infusions I was extremely itchy until my last one. The itchiness did get better with time. I have my infusion around the time I eat lunch but I cannot eat during my infusion. Sometime my appetite decreases a bit before my infusion. I usually have trouble sleeping the night after my infusion. Everyday before my infusion becomes more difficult and more painful. My body seems to crave the treatment so much. It feels like it completely abandon my system too quick.

Though I was hoping for a drastic improvement, I am grateful everyday that I receive Benlysta. I hope as time goes on I will improve greatly.

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Please share your experiences with Benlysta in the comments. Feel free to ask questions as well.

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2 thoughts on “Benlysta

    1. My pleasure. There is a Facebook group called Benlysta Buddies as well if you need some extra support. I believe it’s between 10 – 20 grams. I would typical do some the night before than grab a protein bar that day.Let me know if you have additional questions ❤ I'm sure you will do great! 😀

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