One Patient's Positive Perspectives


33 months of Benlysta

This week marked 33 months of Benlysta infusions for my lupus, adding up to almost three years of taking the only FDA approved biologic medication just for lupus.  Over these past few years, we have seen my lupus gradually quiet down greatly.  This was time well spent on accomplishing a good, but expensive outcome!

So, after contemplating the amount of time that has passed since I started the infusions, I mused over some mental calculations considering other accomplishments that might have taken comparative amounts of time.

Long enough to  build the Titanic

Build the Titanic

Although the past three  years haven’t exactly sailed right by, it would have been more than enough time to carry out one of these feats:

Build the Titanic –  perhaps if they had spent longer in dry dock strengthening the hull of the ship, it would still be afloat today?  I am glad to still be afloat in my career and personal life, thanks to good lupus medications and treatment.  I am grateful that I haven’t completely crashed, burned and sunk, although I came nearly too close to the reefs of prednisone withdrawal at the holidays!

Master a new language – the linguistic experts all say it takes about 2  years to learn a new language by immersion, but learning a language strictly in a classroom takes at least twice as long or more.  However, I have definitely learned the new language of lupus auto-immunity and infusion speak!

Earn a college degree – It takes about three years to finish the course of study for an accelerated bachelors degree, to complete law school or medical school, or to complete a medical residency after medical school.  The only third degree I have received in the past two years was from my previous doctor, when he wanted to know why I wasn’t exercising enough!

Sail around the world

Sail around the world – most small ocean cruisers take two to three years to sail around the world.  Although some accomplished sailors have done it in less than a year, some have even taken as long as ten years to carry out this challenging nautical adventure.

Launch a new company or rebrand a product – many experts of business say that it takes at least three years to redefine the image of a company or product, or successfully launch a new one. (There’s the nautical theme again!)  New business ventures are generally considered a 3-year journey.

Drift ashore after circling the entire Pacific Ocean several times –  an incredible three years after the tragedy of the tsunami in March 2011, a little battered boat was found overturned on the shore of Daren Township, Taitung County.  Somehow, this reminded me of the “three-hour tour” of the Gilligan’s Island television show of the 1960s, except that it took three years instead of three hours, and this boat washed up on the beach unmanned.  At least my nautical comparison holds up, in that both were both waterborne vessels, but maybe that is stretching it just a bit.

Asparagus, 3rd year from seed

Plant and harvest a new asparagus bed – it only takes a mere three to seven years to produce harvestable food from asparagus plants started from seed.  The only thing that ever grew in the asparagus bed in my mother’s yard was a stilly cat that planted herself in it, rolling over on each new sprout and hiding from birds in the dappled feathery shade.  If my mother hadn’t loved the cat more than she loved asparagus, I’m afraid the cat would have been planted in the flower bed instead. My three-month old garden yields Romaine lettuce, spinach and chives this spring, producing faster than we can eat it, but alas, no sign of hard-to-grow asparagus!

Become a not-quite formidable opponent – It takes from 3 to 5 years to attain the first belt in karate, and about the same amount of study under a karate master to gain each additional belt after that.

I think I’ll stick to milder athletic competitions, such as tackling a day’s work, grappling with laundry, subduing a sink full of dishes, navigating the grocery store (nautical theme, again!) or whipping up some supper on a breezy spring evening.  Karate sounds too much like hard work to keep my attention for three years.


3 years to a calmer harbor

So, instead of spending several hours every fourth week of the past 33 months getting Benlysta infusions, I could have accomplished any one of these other illustrious adventures… (or not!)

But on second thought, the investment in Benlysta infusions for my lupus was proven a very profitable one, and has helped me arrive in a much calmer, safer harbor (one last nautical quip!) than I would have otherwise been likely to reach.

[I realized today that I had reversed the order of the words in the title of this post, and instead of the original “Lupus for Benlysta after 33 months” that didn’t make sense, I correctly renamed the post “Benlysta for Lupus after 33 months.” LA 4/1914]




Comments on: "Benlysta for Lupus after 33 Months" (3)

  1. Marianne said:

    I took BenLysta for 1 1/2 years. It didn’t help at all and I had my worst year ever since onset of symptoms. In fact, I had to increase my steroid intake that year just to bring the daily pain level down a notch. I was mostly housebound. Unable to work, clean my house or participate in any family activities.

    So I stopped Benlysta cold turkey and tried using nutrition to help my lupus. I started on the ant-inflammation diet. I went from relying on a cane or walker daily and in agonizing pain daily to no cane-no pain in 4 weeks. The weight began to drop off quickly too.

    After 8 weeks, I made some other tweaks and removed from my diet processed foods, canned foods, dairy, wheat, soy, caffeine, sugar. I’m pretty much on a plant food diet with th exception of wild caught salmon, shrimp & occasionally a NON-GMO chicken.

    12 weeks into my nutrition changes, I have eliminated all lupus meds, methotrexate, plaquenil, Benlysta, flexeril, prednisone, Xanax. I haven’t had any flare since the month I started. My labs all returned to normal levels within 3 months. I’ve lost 50 lbs! And I’m now have more energy, no brain fog or exhaustion.

    I ride my bike 2-3 times a week about 25 miles each time. After 4 1/2 years on disability, I returned to my physically and mentally demanding job.

    So I did in a few months what no lupus drug did in 5 years. People who only knew me with lupus don’t recognize me. It was the BEST thing I ever did and I will never go back to eating processed or packaged foods again!

  2. What a beautiful, thoughtful post! You really improved my day, so thank you.
    I just started a new home business, called Clawhammer Rules Banjo School, so now I have a nice calm feeling about the fact that I have three years to make a go of it! Thanks for that as well.

  3. Thoughtful and informative blog. Thanks for posting this.

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