One Patient's Positive Perspectives

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Learning about Benlysta

Last week, one of the readers of Lupus Adventures commented about how her doctor still didn’t feel he knew enough about Benlysta to answer some of her questions about it.  (Thanks, Mary for sharing!)  He is not alone.

When I first told my rheumatologist that the first new drug in over fifty years JUST for lupus was approved, he still had not heard about it either.

Before taking Benlysta, I had Rituxan infusions in a clinical trial.  And before Rituxan, I had long before run out of standard medication options.

Many years ago, lupus attacked my liver after ten years of taking two steroid sparing mainstays of lupus treatment: a liver toxic cancer drug (methotrexate) and a transplant drug (azathiaprine) that is often used for rare cases of lupus liver involvement, like mine.  But, the drugs were not helping my liver one bit!   Both powerful drugs were stopped.  When I qualified for the Rituxan clinical trial, it had become my only real option left.

Nearly five years later, my lupus worsened over the first year I was dealing with the stress of relocating and overseeing the dementia care of my elderly father.

Without approval to restart Rituxan infusions, there was once again nothing left to take except the baseline lupus drugs plaquenil and prednisone.  These were never enough to control my lupus once organ involvement started.  It seemed my lupus was rapidly heading right back toward a miserable state of health like before Rituxan.  My lupus eventually worsened into major unbroken flare.

Dead End No Turns Left

Out of Options & Challenging My Faith

Out of Options, Again

Once, again, it seemed I was all out of options.  So, until Benlysta had FDA approval, we were still hoping, praying and waiting for over a year for another new option — while I became sicker and sicker.

This was a challenging time for my faith.

My family and loved ones saw me getting sicker and sicker, and my health faltered with increasing severity.  I was beginning to see disability and the end of my career approaching quickly in my not too distant future.  It seemed a major turning point was approaching while I going downhill fast.

I trusted that God would not give me more than I could handle, with His help.  Some days, it was still pretty rough.

Following the FDA with great interest.

claim denied

Appealing Claim Denials

After finally deciding it was time for more of the biologic drug that we knew worked so well for me,  we continued throughout 2010 appealing repeated insurance denials of Rituxan.

Meanwhile, especially because of my vested interest in finding a new option, I closely followed Benlysta’s progress through the FDA approval hearings.  Approval was unexpectedly stalled in November of 2010 due to misgivings about inconclusive findings in some patient groups with the highest and most severe lupus.  By this point, that frustrated me, too.

During the last few months Benlysta was considered for approval by the FDA, my doctor was still battling my insurance company for approval to resume Rituxan infusions.

Each time they said, “no” we appealed again!  We were relentless and didn’t give up hope until the insurance company’s medical director finally wrote a letter in January of 2011 to my doctor and me, telling us to just stop fighting their decisions.

“Quit appealing the appeals, we are simply not going to approve it,” was his final edict.  However, just a few weeks later there was an exciting new option available to us.

FDA Approved Stamp 2

FDA Approved!

Benlysta FDA approval for systemic lupus was secured in March of 2011.  This was the first new FDA approved drug for lupus in over 50 years!  A few weeks after its approval, I mentioned Benlysta to my doctor with hopeful expectation, and was somewhat surprised he didn’t yet know about this new biologic drug.

He listened as I explained, and promised to do his research before my next appointment.

Between the March approval and my next appointment early that summer, my doctor became very excited about what he had learned about Benlysta and was more than ready to have me start.  In fact, he started another one of his lupus patients on it, even before I spoke with him about it the second time.

Two years ago on August 24th, I began my first Benlysta treatments.  Although I have had to delay a couple of infusions due to travel and infections, I have stayed on course with my monthly infusions.

How does Benlysta work, then?

Benlysta wipes out vast numbers of the nasty little overpopulated Blys proteins that swarm around a patient’s B-Cells and confuse them.  Confused B-Cells apparently refuse to do their normal job, and instead pump out lupus antibodies.  Benlysta reduces the number of Blys proteins, and quiets down the confusion around the B-Cells.  The unconfused B-Cells resume functioning more normally, and stop making so many lupus antibodies.  See, http://www.nature.com/clpt/journal/v91/n1/images/clpt2011290f1.gif

Blys Mech BenlystaImm Path SLE

I like to imagine it as Benlysta intimidating my lupus to make it back quietly into a corner so my body can get busy cleaning up and repairing the rest of the battle-damaged tissues.

Benlysta has permitted my body to regain some ground it lost to cell damage caused by lupus antibodies.  It now has a better chance to repair the damaged connective tissue and organs.  I like to envision how Benlysta limits the number of enemy antibody “soldiers” getting through to the front lines to fight against me in my war against my lupus.

I saw myself finally starting to win the war.  After a while, I also started to feel noticeably stronger and healthier.

I am now so much better than before Benlysta!

bfblueonsweetpea

Better on Benlysta

My lupus, which had escalated after my Rituxan induced remission ended, is now quiet and very well moderated, again.  My organ damage has subsided, and only moderate symptoms prevail.

Yes, the big picture of Benlysta’s long-term effectiveness will show better over time, but there is no question it has already been a great help to many of us with lupus.

After six months, I was just starting to see the real benefits of its monthly reduction of the messenger Blys proteins responsible for bombarding and confusing my B-Cells .  For the first few months, my health continued to swung back and forth between either a little better or back to just as bad as it was before Benlysta.

At times in the beginning, I wondered if Benlysta would really do enough to merit the high costs to my self-insured employer.  It definitely took almost a year before the overall increased health benefits started to really kick in.  Eventually, I started to see the effect of being stronger and healthier physically due to lessened lupus activity.

When my body’s healing processes started gaining more ground, and lupus was not killing so many cells throughout my body on a daily basis, the next level of healing was starting to show.

Benlysta works differently than other lupus drugs.

benlysta gateway

Click Here to go to
Benlysta Gateway for More Information

I continued to get better during the second year.  Benlysta never did shout out and say, “wow, look at me I am a miracle drug” like Rituxan had done.  Benlysta didn’t zap my lupus into submission in just a handful of infusions. Benlysta doesn’t work the same way Rituxan does.

Although, Rituxan worked with almost miraculous speed and effectiveness on my lupus, it had a huge downside for some patients.  Unfortunately, Rituxan also caused a significant number of brain infection deaths in a handful of the hundreds of lupus patients who received it in the clinical trials.  I am grateful to have escaped the trouble  Rituxan brought to an unfortunate few lupus patients.

However, despite the after-the-fact knowledge of this potential risk, I am extremely glad for the five years of amazing near remission that I enjoyed, free of charge, thanks to the Rituxan Phase III clinical trials I participated in.

Now, we finally have a better, FDA option for lupus, Benlysta.  Not a cure, but a new effective lupus moderating drug.

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Comments on: "We are still learning about Benlysta" (6)

  1. Thanks for sharing this post, and I am not really too surprised to read this. As you have mentioned, Benlysta was the first medication approved to treat lupus in half a century, which I think can be attributed to just how complex of an illness lupus really is. For most drugs, ongoing tests and studies can provide new insight into how they work and interact within various patients. So, researchers could still be making some big discoveries related to a drug like Benlysta years and years after it was originally approved for use.

  2. Glad to hear about how Benlysta is working for you!
    I almost really just glad to hear about treatment working for Lupus patients in general. I get so frustrated sometimes with the lack of real treatments that are available to us thus far.
    Thank you for sharing!

  3. Reblogged this on The Lupus Liar and commented:
    I am so very happy to hear that Benlysta is working for you and “with” you. And I thank you for noting your experiences with the variety of drugs you have been challenged to take throughout your battles with lupus. I too have not had very much success with various medicines and drugs. For the past year and a half I have been obtaining monthly Benlysta infusions —with a few stops here and there. I have been fortunate that my insurance covers much of the duty required to have the honor of sitting in the chair and my local infusion center. I must say it is not small co-pay. It was not easy, at first, for me to accept obtaining treatment–both emotionally and financially–but that’s another story.

    Although specific lupus markers for me have shown improvement, I physically, have not gotten any better. I am one of those placed on the conundrum side of living with lupus. Of course we know that lupus affects each and every one of us (diagnosed) differently. I took the time to review a few, not all, studies that revealed the fact that many African-Americans have not been represented in the studies well enough to prove any significant factor for drawing a conclusion. But again, treatments of any kind involve different variables of any means —backgrounds, ethnicities, positioned demographics, etc. So, I say I am so very glad that you have found some relief and movement forward. Thank you for inviting the opportunity for others to consider talking about this drug with their personal physicians. My bargaining with Benlysta can be seen in my blog at http://www.thelupusliar.com. My doctor would like for me to continue for a little while longer, just in case my body needs that extra time to accept the changes.

  4. I am so very happy to hear that Benlysta is working for you and “with” you. And I thank you for noting your experiences with the variety of drugs you have been challenged to take throughout your battles with lupus. I too have not had very much success with various medicines and drugs. For the past year and a half I have been obtaining monthly Benlysta infusions —with a few stops here and there. I have been fortunate that my insurance covers much of the duty required to have the honor of sitting in the chair and my local infusion center. I must say it is not small co-pay. It was not easy, at first, for me to accept obtaining treatment–both emotionally and financially–but that’s another story.

    Although specific lupus markers for me have shown improvement, I physically, have not gotten any better. I am one of those placed on the conundrum side of living with lupus. Of course we know that lupus affects each and every one of us (diagnosed) differently. I took the time to review a few, not all, studies that revealed the fact that many African-Americans have not been represented in the studies well enough to prove any significant factor for drawing a conclusion. But again, treatments of any kind involve different variables of any means —backgrounds, ethnicities, positioned demographics, etc. So, I say I am so very glad that you have found some relief and movement forward. Thank you for inviting the opportunity for others to consider talking about this drug with their personal physicians. My bargaining with Benlysta can be seen in my blog at http://www.thelupusliar.com. My doctor would like for me to continue for a little while longer, just in case my body needs that extra time to accept the changes.

  5. Mary here! You are most welcome. I, too, am beginning to feel better on Benlysta! One VERY noticeable change from my usual (besides generally feeling better), is one that my beau, Jim has noticed as well. Here it is and I am curious what it means or if anyone else has experienced it…i have had issues with feeling on fire, that is to say I am hot to the touch, and Jim can accurately feel when I’m experiencing that from several inches from me. Sometimes, I have high fevers, sometimes low, a great deal of the time I am sub zero. No, I am not having hot flashes, lol! My other lupus meds , besides the infusions, are plaquenil and prednisone. The usual other SLE Lupus “domino effect” meds and natural supplements that I’ve been on for many years? Anyone?
    And, thank YOU.for all the information that you provide. I am delighted about the visuals!
    Mary

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