Despite modest gains from Benlysta, my auto-immune response shifted into overdrive, perhaps in reaction to the infection. My lupus symptoms had increased severity.
Besides increasing fatigue and inflamed joints, CNS lupus symptoms re-emerged and I was having serious trouble thinking clearly. Making decisions as simple as picking what to fix for dinner were getting increasingly difficult,. My memory was obviously affected and my family began seriously talking to me about the confusion they were noticing. My husband, daughter, and son-in-law who live with me expressed their growing concern about my noticeable CNS Lupus symptoms.
Although the bronchitis responded quickly to a few days of Zithromax, at week’s end my lupus related auto-immunity kept building, with no apparent intent of backing down.
It is tempting to adopt impatience toward the slow pace of Benlysta’s effectiveness. After consulting with my rheumatologist last week, I am determined to sustain my optimism for Benlysta’s potential long-term effectiveness. The literature indicates that we are just now reaching the point when Benlysta could start making a significant difference. We knew from the beginning that Benlysta is somewhat slow on the uptake, precisely because of how it works. This drug needs time to show its effectiveness, and it’s necessary to stay (a patient) patient.
Finding the contentment to wait for results is difficult, because it is only natural to compare this Benlysta experience with what happened after Rituxan infusions. Six years ago, I received two Rituxan infusions in a Phase III Lupus Clinical Trial conducted by Genetech. Rituxan quickly ushered me into an amazing five-year near remission.
The tortoise and the hare. The difference between the speed of the two medications, Benlysta and Rituxan, is stark and a little hard for me to accept. Both are very expensive! In fact, a year’s supply of Benlysta (12 infusions) and a year’s supply of Rituxan (3 infusions) cost somewhere around $30,000 to $40,000 for either biologic medicine. My insurance paid the negotiated in-network reduced price for the year of $19,000 to the infusion hospital for FDA approved Benlysta, but denied multiple appeals to fund Rituxan.
Because my response to Rituxan was so amazing, in comparison, Benlysta’s performance now seems a little mediocre. Will Benlysta be worth the cost of time and money? So far, I think it is too early to decide that. My enthusiasm about Benlysta’s effectiveness has been moderated a little, but we will follow the course of treatment to see the final results. I am going to give it all the time my doctor recommends.
Perhaps the tortoise Benlysta, slow and steady, will win the race to control my Lupus symptoms. The jury is still out.