Benlysta & Rituxan infusions for Lupus: the tortoise and the hare

Rituxan v. Benlysta?

Benlysta infusion treatments for my lupus have turned down a slightly bumpy road.  So far, Benlysta has seemed to produce gradual, but not dramatic, improvements in my lupus symptoms. However, bronchitis set into my respiratory system within 48 hours of my last infusion, and this is not the first case of bronchitis.  Additionally, over the following few days, a low-grade fever persisted while taking antibiotics, and lupus symptoms continued increasing.

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.

Lupus and Benlysta after 21 weeks

Benlysta may mean less steroids for lupus

Yesterday brought Benlysta infusion number seven for my lupus, and after twenty-one weeks, this new biologic drug is producing encouraging effects in controlling my lupus symptoms.  Although the changes and improvements have not been extremely dramatic, my symptoms have been consistently decreasing and successful partial reduction of daily prednisone dose was achieved.

When my doctor first suggested lowering steroids several weeks after I started receiving Benlysta infusions, my reaction was extreme skepticism.  He explained that his patients taking Benlysta have succeeded in lowering or even stopping their prednisone, even one who has kidney involvement.  Reminding my doctor that we have never been able to drop my dose completely, not even while taking Methotrexate and Imuran for almost ten years, I seriously challenged his suggestion.  He held the line on his request, and prescribed some 1 mg tablets to help me incrementally drop my dose every other week, outlining a schedule that would cut my dose very slowly.

Time to be a compliant patient

Shaking my head in disbelief, I went home and told my husband about the plan, and admitted my own serious  “lack of faith.”  Yet, I resolved to coöperate completely with my doctor’s advice and treatment plan.  After all, he has successfully managed my lupus for nearly 20 years, and I have many good reasons to trust his medical wisdom and advice.   He knows lupus, and I trust him.  It was clear I needed to stay a compliant patient and go along with his prescription, albeit stretching my faith a little in the process.

Later, when I asked a nurse at the hospital infusion center about it, she explained that all the other lupus patients receiving Benlysta there have lowered or eliminated their steroids.  Hearing her answer to my question, I thought just one word, “wow!”  My faith grew a little.

Next week’s doctor appointment will include reporting that my oral steroids are successfully tapered down to the doctor’s goal.  I didn’t think I could do it, but I did.  Now, each morning’s dose is one-half what it was during the entire past year.  Although there have been some really bad days, and a few days of missed work, over all the improvement on Benlysta while reducing steroids is indisputable.

So far, so good!

Now, I am curious  whether complete tapering off of steroids will work.  My doctor said that if we got to his first goal, we would talk later about considering that next step.  If so, it will probably take mustering just a little more faith.  For over a dozen years, our previous attempts to drop further below today’s prednisone dose have been entirely unsuccessful.  Each attempt caused flare, followed by increased steroids.

With Benlysta, apparently the lupus vs. prednisone game rules seem to have changed.  My prednisone dose is down, and my pain, fatigue, cognitive disruption, and other symptoms are still improving.  Although I observe a little increase in my symptoms in the week before each infusion, the overall effect of Benlysta on my lupus has been a continuing modest improvement.