Benlysta to the Rescue

Benlysta (brand name) is one of the newer medications made specifically for patients with Lupus. Most medications used for Lupus were made for other diseases but have anti-inflammatory properties that suppress or lessen symptoms. My Lupus journey has taken my down a few paths but sometimes it is necessary to pivot to move forward.

Over a year ago, an ophthalmologist informed me that Plaquenil, the medication I had been on for thirty plus years, had begun to affect my retina. The suggestion was to decrease the dosage and recheck in a year. Unfortunately, Lupus became active with small flare-ups that increased in severity as time passed. In turn, more Prednisone was needed to control the flares. The doctor only prescribed small amounts of Prednisone which was intended for flares only. The problem is that the term “flare” no longer describes what is happening to me as Lupus is fully active.

The smaller dose of Plaquenil was not enough to suppress my Lupus anymore which is where my Benlysta path begins. There are two options for taking this medication, a monthly infusion or a weekly injection.  Due to a change in my career path, I chose the weekly injection which can be given at home. My wonderful husband has been giving the injections since my hands shake once the pain begins. The injector pen is easy to use but must be held steady for about 20 seconds which I failed to do.

The side effects (for me) have consisted of headaches and nausea. My migraines often caused nausea or vomiting so it was no surprise it happened. The good news is that the side effects should lessen with time. Benlysta can take 3 months to a year (or more) to become fully effective, depending on how the body responds. According to the website, side effects will decrease as the medication’s efficacy increases. It need not be said but, each person’s reaction and efficacy rate may differ.

To start the Benlysta path, we have pivoted from the Plaquenil path completely. Hopefully, this will decrease the severity of damage to the retina and save my eyesight. Currently, my body is not reacting well to the change and there have been more bad days than good. The goal here is to stop relying on Prednisone and to eliminate Imuran (name brand), my other Lupus medication. Funny story, my prescription was not refilled so I let it go and am no longer taking Imuran.

The timing of the medication change has not helped. The damp cold has added to the pain and stiffness thus more Prednisone was required and the low doses were not effective. Usually, a low dose of Prednisone in the morning would have me feeling like myself by lunch. However, there were a few days where my body had stiffened so much so that my fingers and shoulders would not move. My feet were swollen on the bottom for a couple days in a row despite the amount of Prednisone.

It would give me great pleasure to tell you that everything is wonderful, but it has been a challenge. Not to worry though, this is part of the process, and I must go through it to get to my new normal. Resting and eliminating stress was highly recommended while I make the transition but to Benlysta. Physical therapy was helping with my leg strength, but exercise has been stopped since it too was increasing the severity of flares. Being a person who insists on trying, I learned quickly that exercise is not worth the pain and swelling. We will have to revisit once Benlysta in fully effective then we will have to gradually reintroduce so not to stress out my system. It is a delicate balance but if I do it right, the reward will hopefully, give me my life back again.

It was also recommended that I wear a mask and avoid large gatherings, but the holidays were a part of this process, and I did not listen. Therefore, I spent my week off with Covid. There was a birthday party, a Christmas dinner, and one shopping trip which is all I had the strength for, but I expected to get something, just didn’t expect it to be Covid. Thankfully, it was short lived, and I am doing well.

The sad news is that my insurance has changed the way the prescription is to be filled for 2025 which required a new prescription be sent to the new pharmacy but, my rheumatologist has not done it yet. I am due for my next shot on Wednesday, and it takes up to ten days to receive a prescription via mail. This means I may miss my next dose, right at the time when my body was starting to behave normally. The good news is that the Benlysta is working, and I made it through today without Prednisone, Tylenol or Motrin.