If you are unfamiliar with the medication Benlysta, however your doctor has recommended it as a potential treatment and you want to learn more---this is the blog for you!
As someone who has first-hand experience with the medication (both injections and infusions) and has had lupus for over 30 years, it is my desire to be as candid with you as possible about all aspects of taking this medication. Hopefully, I will provide clarity and debunk the fear of the unknown so you can make an informed decision as to if you are ready to try Benlysta for yourself.
What Is Benlysta?
Benlysta (belimumab) is the first FDA approved drug in over 50 years that has been designed specifically for the treatment of systemic lupus and recently, lupus nephritis. It is a non-steroidal biologic therapy. That means it consists of genetically engineered proteins that use your own immune system to target specific parts that fuel inflammation, specifically BLys cells that can make your lupus active and cause lupus flares. It is given as a once a month infusion or as a weekly subcutaneous auto-injection.
Here is the good:
It is one of the safest medications available to treat lupus.
It is the MOST studied lupus medication. Ever.
It is the ONLY medication that has ever been specifically designed for systemic lupus and lupus nephritis.
It is not a steroid and can even help lower your need to take steroids!
It works well in conjunction with other lupus medications.
It has been shown to reduce fatigue, arthritis, and overall disease activity.
It offers hope to those who haven’t responded well to the traditional lupus treatments.
According to their website: “Benlysta has the largest lupus clinical trial program to date. BENLYSTA has been studied in multiple lupus clinical trials involving more than 2,500 adult patients, over 1,100 of whom were treated with BENLYSTA. To date, the pediatric program has included 93 children with lupus. BENLYSTA was also studied in the largest and longest lupus nephritis clinical trial ever conducted, which involved 448 adult patients.” - www.benlysta.com
It does NOT interfere with the efficacy of the COVID-19 vaccine! No adjustments have to be made to your treatments if you receive it.
Here is the not so good:
The most common side effects of Benlysta are: nausea, diarrhea, and headache. These are usually short lasting and occur a few hours after the medication is given. Less common side effects include stomach pain, vomiting, stuffy nose, cough, sleeping issues, leg or arm pain, depression, and UTI.
If you are pregnant, breast-feeding, or planning to become pregnant, you need to hold off on starting Benlysta. Even after stopping the medication, if you are planning to become pregnant, you need to wait at least 4 months before trying. If you DO become pregnant while receiving BENLYSTA, talk to your healthcare provider about enrolling in the BENLYSTA Pregnancy Registry.
It can be costly. The molecules they use for the biologic process are fragile, and it’s given by injection or through an IV. Thankfully there is a co-pay assistance program through GSK, who manufacturers the drug!
Like other immunosuppressants, there may be an increased risk of infections. But thankfully it is a low-risk compared to other stronger medications like Rituxan, Cytoxan, and methotrexate.
Here is Where it Came from:
Benlysta (belimumab) was developed by Human Genome Sciences (HGS) and GlaxoSmithKline (GSK). HGS is now owned by GSK. It was approved by the FDA on March 9, 2011 to treat SLE and on December 17, 2020 to treat lupus nephritis. Benlysta (belimumab) is the first-ever treatment indicated for lupus nephritis, making the FDA approval a historic day for patients and physicians.
Here is How It Works:
In the mid-1990’s a protein called BLys (B-lymphocyte stimulator) was identified and connected to lupus disease activity in higher levels. Benlysta helps by binding to the BLys cells and prevents them from making more.
Auto-Injector Version Verses Infusion:
A few years ago, an auto-injector version of Benlysta was introduced to the market. It was advertised to be more convenient and overall a more pleasant experience compared to intravenous administration. Studies have looked at this new form and reported 40% of patients reported improvements in symptoms using the auto-injector compared to the traditional IV administration.
However, doctors have their own opinions on which may be more beneficial for the patient, particularly with the new dosing for lupus nephritis. Dr. Thomas, who wrote “The Lupus Encyclopedia” stated, “I had a couple of patients who flared when I switched from their IVs to the self-injectable. They were convinced IV worked better. From a medical standpoint, I am obliged to say, "the self-injections work as well as the IV." However, the new dosing for lupus nephritis makes me question that. I always like to ask myself, "What would I do if I were the patient, knowing what I know?" If I had SLE and had this choice, I would most likely ask to do the IV infusions first (hoping it'd work faster than the self-injectable), then after at least a month, ask my doctor to change me to self-injectable (for convenience since I'm way too busy to get IV infusions; this is simply based on my personal preference). I would start the self-injectable 1 week after my last IV infusion. However, formally, "There is no difference, and it should be up to the patient, based on the patient preference of self-injections vs IV infusions." *Disclaimer: Dr. Thomas is on the Speaker's Bureau for GSK, producer of Benlysta
My Experience:
Lupus is a complicated disease which affects every person differently. That means that Benlysta may be a wonder drug for some, but not for all. I can speak from my personal experience and say it has worked well for me. I have been able to taper down my prednisone, I have not had a mouth or nose ulcer in over a year, and I feel my cognitive dysfunction (lupus fog) has improved.
I first started using Benlysta as a once a week auto-injection. Though the auto-injector was convenient in some ways, I found it inconvenient in others. I found it difficult to get the right angle when I wasn’t using my dominant hand. I dropped the unit twice and triggered the needle, leaking medication and wasting my dose. Additionally, since the auto-injectors have to be refrigerated, the medication is cold and stings like a dickens (even after the recommended time of 30-60 minutes at room temperature). These factors led me to make the decision to switch to the monthly infusions after six months.
I can happily say that I don’t mind my infusions at all. I like interacting with the nice staff and other patients at my infusion center. I like the “one and done” feeling of having to only think about taking the medication once a month. Particularly since I already have to give myself methotrexate injections once a week. I like that a medical professional administers the medication and I don’t have to worry about “messing it up.” I also like that instead of feeling ‘out of it’ for one day every week, I only feel mildly out of it for one day a month due to the pre-meds I am given at the infusion center (Tylenol and 1/2 a Benadryl). Lastly, I can also rest assured that I am getting my full dose, and not wasting any that may have leaked on my leg. Personally, I think the larger dose once a month has benefited me.
Overall I am very happy I switched to infusions and very happy I started Benlysta.
Talk To Your Doctor About Benlysta:
Be open and honest about your symptoms with your doctor and ask them if benlysta may be a good option for you. If you would like additional information, check out Benlysta Cares, a program developed by GSK that has been carefully designed with real patient input to provide the support and resources needed to answer questions and help manage your treatment with BENLYSTA.
The Benlysta Cares program includes:
Information about your financial options, including the BENLYSTA Co-pay Program and BENLYSTA Gateway
Access to a BENLYSTA Nurse Ambassador*
Support for self-injection training
Instructions on how to receive your free sharps disposal container and BENLYSTA carrying case
A free subscription to Connections, a magazine filled with lifestyle content and tips for living with lupus
Written By:
Kelli Roseta
**All resources provided by this blog are for informational purposes only, not to replace the advice of a medical professional. Kelli encourages you to always contact your medical provider with any specific questions or concerns regarding your illness. All intellectual property and content on this site and in this blog is owned by morethanlupus.com. This includes materials protected by copyright, trademark, or patent laws. Copyright, More Than Lupus 2020.
Sources:
benlysta.com/guide/index.html, lupus.org/answers/entry/what-do-i-need-to-know-about-benlysta, webmd.com/lupus/news/20110309/new-lupus-treatment-benlysta-faq,
The Lupus Encyclopedia, Dr. Donald Thomas, Jr. M.D.., FACP, FACR, 2014 John Hopkins University Press
March 2021