Benlysta Take Two

Belimumab (Benlysta) has the potential to be the first targeted biological treatment that is approved specifically for systemic lupus erythematosus, providing a new option for the management of this important prototypic autoimmune disease. (Lancet 2011; 377:721-31)

On Monday, I had my second infusion of the new “it” lupus drug, Benlysta. There are many individuals blogging about their experience with this drug, I really recommended reading up on these peeps, including LupusAdventurer. Her experience is well documented and provides an excellent perspective. Considering that I am only on infusion #2, all I can say is that things seem to be a little bit better… I am not cursing the gods every day because of the pain, or getting confused as often. Yes, there are some bad days but the frequency is not on a daily basis. I also met with Dr. Lupus during my infusion- which is always a form of entertainment for me. We are both crossing our fingers that Benlysta will help me and reduce my symptoms. With that said, here are some tips that I have learned, thus far, as a Benlysta-user:

1. Dress comfortably. You will be seated in a chair (a comfy chair hopefully)  for 1-2 hours. Unless there is a hot individual you are trying to impress, infusions are not the time to be sporting the trends.

2. Have a driver for the first two infusion sessions. TRUST ME on this one. Benlysta infusions require a pre-treatment of antihistamines (Benadryl). This is to reduce your chance of having an allergic or infusion reaction. This is not your ordinary pink pill you swallow. The antihistamine will be shot up into your veins and you will instantly feel its power. It feels like a baby heart attack at first- your chest will get tight, your throat will constrict and you will taste it (blah). These sensations do not last- it is very quick. As soon as that fades, you will experience the best high you ever had. I am not going to lie- after experimenting with non-pharmaceutical products- this was the best I ever had! You will not be in ANY CONDITION to operate heavy machinery.

3. Do not schedule a thing after your first two infusions. You will be drugged and not yourself. After my infusions, I stumbled into bed and passed out. With my first infusion, I ended up sleeping for 18 hours straight only to wake up the next morning still feeling groggy. During the second time around, I slept for a couple of hours and woke up in the middle of the night. As much as I wanted to do stuff, I could not get out of bed- I was just too groggy. What does this grogginess feel like? It feels like waking up after a crazy college night and trying to figure out what the hell happened (we have all had that moment).

4. Bring something to entertain yourself. Most likely, you will pass out with the IV antihistamine, but there is a chance you will just be hazed. Both times, I was not able to sleep. Do not try to read literary masterpiece or anything that requires many brain cells. Remember- you will be under a wonderful haze. On that repetitious note, do not have your cell phone out! You will be tempted to text or talk while being infused, and the person on the other end will not understand you. During my first infusion, I attempted to respond to some work emails. As you may have guessed, I was not very successful. My colleagues thought I took a bottle straight to the head. Yikes.

5.  Be more aware of germs and the people that carry them. Because Benlysta does reduce the activity of your immune system, you are more at risk of infections (and cancer). As a Benlysta user, more than ever do you need to be cautious of your health. Of course, this is better said than done. How the hell are you suppose to stay healthy during the cold and flu season? Try your best to stay away from those that have the sniffles or the slightest cough. Unfortunately, I caught the sniffles from someone, but it was the worst sniffles I had ever experience. It was the super-sniffles- I felt like well-beated crap with fever and all the joyous lupus-bells.

6. Consider the financial aspect. We have heard the wonders and greatness of Benlysta, but of course, it comes with a price. AND WHAT A PRICE! I was told that each infusion was worth $5000. Luckily, I have insurance that covers 90% of that… but there is still a 10% that needs to be covered. Here is a little-not-so-secret- I am no millionaire. It was recommended to apply for co-pay assistance. The pharmaceutical company that manufactures Benlysta has their own co-pay assistance, but unfortunately, because I am funded by the government I was denied. My next hope is with the Health Well Foundation, a non-profit organization established in 2003 that is committed to addressing the needs of individuals with insurance who cannot afford their copayments, coinsurance, and premiums for important medical treatments. I am hoping to hear something very soon.

7.  Go in a with a good attitude. Yes- having lupus sucks and it is life-changing, but let’s be thankful that we are still breathing.

Life’s not about understanding or doing it right. It’s about taking what you’ve got and just smiling about it anyway.

Happy Holidays!

3 thoughts on “Benlysta Take Two

  1. How have you been feeling now on benlysta? My doctor is thinking of trying me on it… but everyone I’ve talked to seems to have very different experiences… so I’m not sure whether to take the plunge. Thanks for documenting your experience! Hope that it is helping!

    • Hey there! I feel like Benlysta is helping but it is important to remember that it may not eliminate the symptoms… just lessen the blow. I was not having any luck with prior treatments and that is the main reason why I took the plunge. Patience is key. I am about to do my fourth infusion in a couple of days… so I am still a newbie. I am not going to say (just yet) that Benlysta has changed my life. Of course with any drug, there are risks. As you may know, Benlysta puts you more at risk of infections and etc. Personally, I have been frequently sick with sniffles, coughing, and etc. I just happen to be a magnet for any germ and virus! Everyone has their own preference… so my advice to anyone is to make sure you balance the risks and benefits and the convenience factors (ie. Costs, travel, etc) of this drug. Thanks for reading and commenting. Keep me and others posted! I feel like we are all in this together!

  2. Pingback: Lupus Treatments: Trial and Error… and Patience | divawithlupus

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