One Patient's Positive Perspectives

One year of Benlysta

This month will mark one year since starting Benlysta infusions for my lupus.  As mentioned before, my lupus is thankfully now a milder, gentler “monster,” and my overall health has improved markedly.  Most importantly, my symptoms of central nervous system involvement and my energy levels have greatly improved.  Now, my cognitive function is much more stable, my short-term memory has vastly improved and my analytical and problem-solving mental processes are “back.”  I have really enjoyed overall improvement in my ability to complete mentally challenging essential functions of my job as a government law office administrator.  Benlysta helped me continue working.

The progress of lupus improvement from monthly Benlysta infusions was slow and moderate, but cumulative.  At the one-year milestone, looking back at the state of my health then compared to now, there is an unmistakable difference.  In the eighteen months before starting Benlysta, I had come of near remission and my overall condition was deteriorating steadily, and was again threatening my work.  After a few months on Benlysta my lupus quieted enough that recurring steroid bursts were not needed, and my daily maintenance steroid dose was cut in half.

Before Benlysta

Before Benlysta, my worsening lupus symptoms were many:

  • CNS lupus was extremely flared w/ increasing cognition, memory and analytical deficits
  • fatigue and malaise were overwhelming
  • joint pain and inflammation levels were high
  • gnawing “deep bone pain” in the long bones of my arms and legs
  • horribly itchy lupus rashes were out of control on my hands
  • mouth and nose ulcers were almost constant
  • malar butterfly rash, mostly showing up “peekaboo” more in the mornings and fading at night
  • sjogren’s syndrome was  very active in mouth and eyes
  • onset of intense peripheral neuropathy pain almost every night
  • insomnia due to neuropathy symptoms

Now, after one year of Benlysta infusions, my lupus complaints are fewer:

  • pesky, but much milder neuropathy pain several times each week
  • insomnia from neuropathy is much less frequent
  • arthritis inflammation in my hands running amok
  • a handful of random discoid lupus rashes come and go on my hairline, face, neck and arms

Benlysta gets B+ grade

So, the doctor is continuing my treatment with Benlysta infusions, and is very pleased with the improvement of my lupus.  Although we both originally hoped in vain for approval of Rituxan, because of my past dramatic improvement from using that biologic drug, that is old history.  Now, Benlysta has done a good job of quieting my lupus and improving my health.  If I were to rate Benlysta’s performance over the past year with a letter grade, it would definitely earn a B+ rating.  [Although Rituxan comparatively earned an A+, the insurance company would not pay for it.]  Benlysta’s B+ is an acceptable, welcome outcome!

Sulindac for inflammation

I am re-starting the anti-inflammatory prescription drug Sulindac for my arthritis inflammation.  This is my NSAID of choice, since I cannot take over-the-counter aspirin, motrin or naprosyn due to severe adverse reactions.  I took Sulindac successfully for most of 25 years, and it very effectively controlled ballooning hand knuckles.  For the first time in years, I was able to stop taking it completely for the five years following my Rituxan infusions.  It is time to start taking it, once again, since Benlysta is not effective controlling the arthritis inflammation of my lupus in my hands.

Follow Up in 4 weeks

To address my current problems with peripheral neuropathy, my rheumatologist prescribed Lyrica (pregabalin) to help reduce nighttime nerve pain, without having to resort to taking powerful pain killers to get to sleep.  I was surprized when I my pharmacist told me that Lyrica is not on my insurance formulary, and the drug requires precertification.  I cringed at the $350 it would be without my insurance, so my pharmacist contacted my rheumatologist to get the pre-certification process started.  Hopefully, my insurance will coöperate and the  approval will go quickly.  I will follow-up with my rheumy in four weeks.

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Comments on: "Lupus and Benlysta – One year rheumatologist check up with B+ Benlysta grade" (1)

  1. Marianne said:

    January marks my 1 year anniversary on Benlysta. I wish I could say I have had the success you have had. My Dr keeps trying to convince me I’m better. But, believe me, if I felt better, I’d be the first to know it. I’ve taken more steroids this past year than any other. I’ve had the longest flare-ups this past year. My ability to navigate my stairs at home becomes more difficult it seems weekly. I can barely go up & down them without holding on the rail and pulling myself up or holding onto both rail and wall to brace myself in case my legs give out again. Not to mention the 15 lbs added this year. My Benlysta grade is D- the only reason it doesn’t get an F is because my dr said my ANA is negative.

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