One Patient's Positive Perspectives

Rituxan v. Benlysta?

Despite modest gains from Benlysta, my auto-immune response shifted into overdrive, perhaps in reaction to the infection.  My lupus symptoms had increased severity.

Increasing lupus symptoms

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.

Waiting for Benlysta

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.

Rituxan, the proverbial hare

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.

Benlysta, slow and steady

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.


Comments on: "Benlysta & Rituxan infusions for Lupus: the tortoise and the hare" (4)

  1. Awesome. I do not know where I would be without your frank and knowledgeable blogs. Especially on cold January nights when the prednisone won’t allow me to sleep. Thank you so very much!

    • Jane, you are so welcome! Thank you so much for the kind affirmation that Lupus Adventures is meeting one of it’s most important goals. You might like my 2001 poem on the “Poetic Lines” page. I would love your feedback on it.

      Wee Hours of Wakefulness

      In the wee morning hours of wakefulness,
      when my aches steal away precious sleep
      I’ll sit and converse with my Lord, and a lonely vigil keep.
      I speak to Him of my weariness,
      and my longing for healthier days.
      I seek for His tender mercies now,
      while my heart in fatigue humbly prays.

      Click the link to read the rest of the poem:

      LA 🙂

  2. […] 9. Benlysta & Rituxan infusions for Lupus: the tortoise and the hare – February 6, 2012 – 828 views […]

  3. Oh, I hate being the “patient” patient most of all! Brain fog and mental fatigue are some of the hardest things to deal with. It’s terrible to feel like you are walking under water, and your brain is drowning too. Thinking of you and hoping you see results soon! (HUGS!) 🙂

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