One Patient's Positive Perspectives

Posts tagged ‘infusion’

Bring me a lupus infusion with epidurals on the side

Valle Luna Phoenix thEOGYSE51A recent “date night” found us sitting in a quiet booth while the waitress approached the table with a warm welcoming smile.  The Friday night dinner rush was over by our 8:30 arrival, and we had only waited a few minutes for our table.  Earlier, she assured us, was pretty zany at this local authentic Mexican restaurant we had all but forgotten about in recent years.

Tired some of our usual dinner spots, a return to the casual charm of this unpretentious eatery was long overdue.  The decor had not changed in the decade or two since our last visit, but it really didn’t need it.  Part of its southwest charm is the rustic feeling of being just over the border from Mexico, while really eating dinner right in the middle of Phoenix, more than a half day drive north of the border.

Valle Luna Phoenix BestWhile notably absent this evening, it seemed there might still be a faint echo of the mariachi band that had once strolled between the tables during dinner hour.  Amused while studying the menu for tummy friendly fare, a chuckle was stifled while considering my possible order.  Over the past few weeks, life had indeed served up a new menu of possibilities and adventures.

What would I like today with my lupus?  Well, how about a double dose of doctors, a lupus infusion, and a little Lumbar epidural on the side?  Seriously, the mild enchiladas, rice, and beans hit the spot quite nicely.  We enjoyed some quiet small talk over dinner while reviewing events of the day, and contemplated the long-awaited relief achieved by recent procedures that treated a nagging herniated disk.

Butterfly OrangeWith a total of three epidurals over the past few months, there was finally relief from the unwelcome companion of low back pain and leg muscle spasms.  After several months where the need for pain killers (tramadol) became increasingly frequent instead of episodic, it had become clear the chiropractic treatment we tried was woefully inadequate.  So, after visits to three different doctors there was a new personal record, as a little lupus treatment was sandwiched between some “minimally invasive” spine treatments.  Each epidural required a day off of work, sedation and a full day to rest and recoup.  With each of three treatments, the intense pain of sciatic leg cramps and low back pain subsided to more tolerable levels.

Mexican Valle Luna Phoenix thFDZH2OZYIt seems that Lupus alone is quite enough, but when other medical issues overtake a lupus patient, the combination of other medical difficulties and challenges can threaten to overwhelm even the strongest of souls.  It seems this is just the right season of life to be thankful for quiet lupus biomarkers, and be grateful for the blessings of relief from many months of intense pain.  Monthly Benlysta (belimumab) infusions have controlled lupus well.

Thankful to be out enjoying the “date”, and thankful for relief from pain, our Mexican fiesta, without the side dish of screaming pain was delicious!

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Lupus Awareness Month, Manicures and Missing Toenails

WP_20141129_15_16_32_Pro (1)Infusion day seemed a fitting event for experiencing Lupus Awareness Month with flare.  With the day spent in a circular junket around town, my little PT cruised from doctor to doctor for treatment for lingering problems from a recent car accident, and then to an annual Plaquenil eye check up.  With two hours to spare, I stopped in for manicure and a pedicure, and had an interesting discovery.Hair curls, manicures, pedicures but no lupus cures...

When the nail tech removed the bright purple nail polish, she noticed that the big toe nail had separated from the nail bed, but without any apparent reason such as fungus or infection.  It appears my big toe nail completely died, and the nail stopped growing several weeks ago.

The salon suggested that trauma during my late March trip and fall at the shopping mall killed the nail.  Perhaps while scuffing knees and straining the ankle, the nail bed base also sustained a hefty wallop on the edge of the cement step or the sidewalk.  The nail salon urged me to show my toe nail to the nurse while at the rheumatologist’s office for my monthly Benlysta infusion.

The verdict,  “Expect to lose the toe nail soon.”  Well, it seems the summer  fashion forecast lacks any nail vanity, and just in time for sandal season.  It will be interesting looking for closed toed summer shoes for a niece’s late July wedding.  What fun!

The infusion was the last planned stop of the full “medical” day.

infusion in handThe afternoon passed in the infusion chair with a monstrous accounting textbook perched on my lap and a fresh yellow highlighter gliding across the pages.

Eventually it was hard to pay attention to studying for my college class.  The friendly chatter of a couple of other patients getting RA infusions was more engaging than dwelling on the accounting formula, “Assets = Liabilities + Owner’s Equity”.  Without asking, it was clear they obviously didn’t want to chat about accounting!

No one does.  The reason is hard to pin down, but no one else seems to get very enthused about chatting about or otherwise dwelling on accounting theory, either!

Lupus and a better no gray way

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New Oil-Based Hair Color without Ammonia — No Sting, No Smell, No Rash!

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Image courtesy of Wikimedia license Incomposition Sikkim

We should know not to try to draft a post from a cell phone!  I was sitting at my doctor’s office getting my Benlysta infusion this afternoon with just my cell phone along for amusement.  So, I started trying to write a post I have been trying to get to for a couple of weeks.  I uploaded this picture from my windows phone, taken at a recent hair dresser appointment.  While logged in earlier this evening to finish the post, I discovered that the picture had been posted all by itself, without the story behind it.

Well, perhaps I should finish the post, now, especially since some of you readers have already “liked” it.  That is great faith, liking a post before it is written!

At my last hair appointment, my hair dresser was excited to tell me about a new Matrix hair color that the salon had started using. She has been using a Matrix formula to do highlights and lowlights that covers just the gray roots, about every 8 weeks.  The formula was pretty mild, but still contained ammonia and caused my scalp to burn while it was on my hair, and then afterwards I would sometimes get lupus rashes on my hairline where the scalp was irritated.   It was not uncommon to need prescription prednisone ointment for a few days to keep rashes in check.

So, the new oil-based Matrix formula Rosa wanted to try has no ammonia, and doesn’t smell or sting, and there was no need to sit under the hair dryer.  She explained that the oil in the formula carried the pigment deep down into the hair shaft and bonded to the inside of the hair, making it smooth and healthy instead of damaging the hair.

Rosa and I have occasionally discussed the problems many lupus patients have with perfumes, dyes and hyper allergic response to many chemicals in the environment.

You see me smiling in the picture, because even though with goopy hair dye all over my head, I somewhat resemble a drowned rat, my scalp was not burning nor were my nose and eyes wincing from fumes.  No smell, no burn and afterward… no rash after my hair appointment.

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Meet Rosa!

I updated this post when it was finally finished so you could also meet my hair dresser, Rosa. She has been taking care of my hair at JC Penny’s salon for over a year, and “rescued” my dry damaged hair from previous over-processing.  My sister-in-law introduced me to her, and I have been very happy ever since.

So, this time, she recommended the perfect new permanent hair color for a lupus patient.   You might just want to ask your hair dresser about the new Matrix oil based formula color, “Colorinsider.”  Check out their web site link in the caption of the picture I “borrowed” from them.

I don’t often support a product (and am not being compensated for this in any way) unless I really believe it is something worth sharing with other lupus patients.

Benlysta for Lupus Without Infusions?

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Benlysta (belimumab) for Lupus

 FDA approved Lupus drugs

Clinical trials are an incredibly important contribution to new drugs for lupus.  Before 2011, there had not been any new FDA approved drugs for systemic lupus in over 50 years.  Before that there were only three, aspirin, plaquenil and prednisone.  Now, with Benlysta, there are four.  New biologic drugs like Benlysta are constantly being researched and we will likely have more soon.  We all hope it won’t take another 50 years to get number five!  In the mean time, there are still things we can do to improve treatment.

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Using Auto Injuector

One of the drawbacks to Benlysta is the great cost for the drug and the infusions.  It is mixed following exacting rules before infusion, taking at least thirty minutes to prepare.  Living within walking distance from my new rheumatologist, I am also within each reach of the research arm of the practice.  The practice is participating in a handful of lupus related research trials, including some patients from the first Benlysta clinical trials.  The next chapter of my lupus treatment will mean a break in the monthly infusion routine.

What comes next?

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Practicing self-injection

After having my last infusion a few days ago, in about ten more days weekly self-injections of 1/4 the amount of Benlysta will begin to replace monthly infusions.  The next couple of months will be spent participating in a clinical trial to test an auto injector that delivers Benlysta as a subcutaneous injection.  Last week, I had my training in how to use the auto injector and shot (wasted) a whole real dose of Benlysta into a fake “skin” device to prepare for my first self-injection.  The plan is to do the first and two of the other eight injections under the watchful tutoring of the research nurse, and the rest of my weekly infusions are at home.

Official information about the clinical trial

GlaxoSmithKline’s Phase II Open-Label Single-Arm Study to Evaluate the Reliability of an Autoinjector that Administers Belimumab Subcutaneously in Subjects with Systemic Lupus Erythematosus (SLE)

The primary outcome of the study is to assess the suitability of the autoinjector for self-administration of belimumab by subjects with SLE in real-life conditions. The study will assess the use of the autoinjector inside the clinic setting and outside the clinic setting. The study will also assess the safety and tolerability of belimumab administered subcutaneously (SC) via the autoinjector. Subjects will self-administer belimumab SC into the thigh or abdomen using the autoinjector device for 8 weekly doses. Subjects will return for a follow-up visit 4 weeks after the last SC dose of belimumab. All injections will be assessed by the investigators for success based on direct observation and/or the subject diary. A total of 118 subjects (treated with at least one dose of study drug) are planned to be enrolled in this study. The study will last through mid-2015 and is being done in these cities:

Gilbert and Phoenix, Arizona
Lansing, Michigan
Charlotte and Greenville, N. Carolina
Greenville, S. Carolina

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Benlysta injection sites

Nearly foolproof auto injector

It seems like this will be nearly foolproof.  I am no stranger to “Sub Q” injections, after giving scores of them the old-fashioned way helping my husband with blood thinning Lovenox injections.  After a bed-side crash course in his hospital room a few years ago, I became a pro at using short-needles with pre-filled injections, and jabbing him in the tummy to help stave off the return of massive blood clots.  I stayed pretty calm doing them, so I have no apprehension about doing them with an auto injector with Benlysta.  In comparison, the new auto injector seems like child’s play.  Just like many other “Sub Q”  injections, it is injected somewhere either in a U-shaped area around the navel, or in either upper thigh.

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Making a difference

Fewer flares?

Because with the monthly infusions I tend to flare during the last week, it will be great to find out if evening out the dose to weekly injections will help prevent the recurring monthly flare cycle. I will be keeping a journal as part of the study, so look for updates here, too.

It is my hope that by my participation I will help decrease the costs of getting Benlysta to the people who need it most.  One bonus?  During my participation in the clinical trial, there is no cost for seeing my rheumatologist, lab work or the medication.  Also, at the end of the trial, there will be a small stipend coming to me of $5o for each in-office visit during the study.  There is always room in my wallet for a little fun money!

Benlysta for Lupus, the first 1,000 days

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1,000 days of Benlysta

This week (yesterday) marked a quiet little anniversary, the 1,000 day mark after beginning monthly Benlysta infusions for Systemic Lupus Erythematosus on August 24, 2011.  So, without pomp or celebration, today begins as day 1,001 since starting Benlysta.  From the beginning, the Benlysta adventure is chronicled here, and a special page indexes all the posts about this journey.

This 1,000 day Benlysta milestone gave me pause to ponder whether there were any other 1,000 day milestones I could  use to compare to this span of time.  A little research led to an interesting group of comparisons, some were serious and some were fun, some were history and culture changing, and some were of fleeting and trivial impact.

1,000 days might be enough to carry out significant change, or long enough to waste accomplishing absolutely nothing meaningful at all. I will let you be the judge, but history will judge with perspective, and ultimately God will always be the final judge.

How long is a thousand days?

1,000 days is equal to exactly 2 years, 270 days (unless one of the years is a leap year, resulting in 1,000 days being equal to 2 years, 269 days. Also, 1,000 days expressed as a decimal fraction is 2.74 years.

1,000 day comparisons

  • thH9WE6Z7AThe approximate length of the public ministry of Jesus Christ from the first miracle in Cana to his death on a cross outside the City of Jerusalem, as documented in the first four books of New Testament, the gospels of Matthew, Mark, Luke and John.  History and life changing!
  • The length of a Columbian civil war (The Thousand Days War) fought between 1899 and 1902 over an ideological conflict between liberals and conservatives that divided families and took the lives of 100,000 Colombians before a mutual cease-fire was reached.  An end to strife.
  • th7SY4JSR2The approximate length of the presidential administration of John F. Kennedy, that lasted 1037 days, from his January 20, 1961 inauguration  to his assassination on November 22, 1963.  A death that shook the nation.
  • 1,000 days from the start of a woman’s pregnancy until her child’s 2nd birthday, a crucial period for proper nutrition that allows children to develop without permanent cognitive and physical delays.  Important beginnings.
  • How many consecutive days a 6th grade boy from Holmen, Wisconsin wore a Green Bay Packer’s player Aaron Rodgers’ jersey, while living in a household of Minnesota Vikings fans.  Much ado about nothing!
  • How long Kate Middleton has been a duchess after marrying Prince William.  She reached the 1,000 days milestone in her marriage and acquired royalty earlier this week on May 20, 2014.  A royal beginning.
  • thSTW4CIIDThe length of time it takes for Landana 1,000 Days Dutch Gouda cheese to naturally ripen, while stored at a closely guarded secret specific temperature and humidity. The fruit of patience.
  • The length of time the famous Schatz 1000 day clocks can run without winding. Schatz 1000 day clocks bear a “54” in a circle on the back of their movements, and were first made in 1954. An engineering marvel for its day.

Lupus before the 1,000 days

My past 1,000 days with Benlysta have significantly stabilized my Lupus, after all other treatments we tried before it were exhausted.  1,000 days ago I had come out of a five-year, Rituxan-induced remission, and was facing the likelihood of an early disability retirement.  Those were rough days, things were getting worse by the week, and I felt absolutely physically miserable most the time.  But, I was not in despair!  The joy of the Lord was my strength, and my daily walk in dependence upon Him helped me keep personal peace, patience and hope.

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August 24, 2011

1,000 days ago, my joints were swollen constantly, my CNS symptoms were lasting all day long some days, I was increasing unable to manage my work, had significant cognitive difficulty with memory, problem solving, logical thinking, written business communication, and managing my government law office.  I was in an unending siege of bone-tired fatigue.  Mouth and nasal ulcers were almost constant, and my health was a wreck.  I was in the middle of a long, slow, unremitted lupus flare.

While trying to keep up with my job, I was struggling.  I was using up all my sick leave, plus using all my vacation leave in lieu of sick leave, and occasionally had to take a few days off without pay to deal with Lupus.  It was a rugged ride and a very challenging adventure!

Lupus status on day 1,001

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Benlysta after 1,000 days

Gradually after beginning Benlysta, my Lupus problems began to lessen and then become generally well controlled.  I still have bad mornings, but now rarely have to take more than a half-day off due to lupus.  I continually have a modest balance left of my monthly sick leave accrual, and have not had to dip into other types of leave for lupus-related work absences in over a year or so.  Although I don’t feel like my health is “amazing,” most days I feel generally well and handle my daily responsibilities.

Benlysta is expensive, there is no question, and it cost my employer between $8,000 and $13,000 each month, an annual total of about $100,000 for each of the first two years.  A few months ago, my new doctor learned from representatives at GlaxoSmithKline that I was the only patient receiving Benlysta at a hospital.  They told her I was “famous” to them because of this unusual requirement, and that they all knew immediately who I was when she started describing me and began discussing my case.  I thought that was a little bit spooky!

The first two years of Benlysta cost more than double my current annual cost that my insurance pays now for infusions at my doctor’s office.  Only after leaving my previous out-of-network rheumatologist, it was revealed that the insurance-imposed hospital infusion requirement was strictly because my rheumatologist was an out-of-network doctor.  Now, with my new in-network rheumatologist, the average monthly cost to my self-insured employer is only $3,500, and my cost is an affordable $35 co-pay.

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Thankful for Benlysta

I am thankful that because of Benlysta, a premature end and early medical retirement from my career was averted narrowly .  This month, I finally reached full retirement age based on years of service and age, and now qualify for my full government pension.  Now, if for some reason I need to suddenly stop working for health reasons, my full pension is available to support me through life’s next chapter.

My hope is to work at least about 18 months longer, when my retirement percentage formula will reach the last higher level pay adjustment before reaching age 63. I plan to be out and about enjoying new lupus adventures before that age!

 

 

Benlysta for Lupus after 33 Months

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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!

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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.

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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.

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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]

 

 

Benlysta Infusions for lupus at a fraction of the price

52028530For two and a-half years I have been blessed to be able to receive Benlysta infusions for my lupus.  Every month, I went to a hospital all the way across town.  My employer-funded health insurance required that the infusions to be given in a hospital, and not at my previous rheumatologist’s office.  After recently changing doctors (leaving my out-of-network rheumatologist to start seeing a doctor who participates in my HMO plan,) out-of-pocket office visit costs dropped by $90 each visit.

The rest of the story?  Someone besides me is saving money, my self-insured employer is saving dramatically more!

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Really? What a thing to be “famous” for!

My local government self-funded health insurance plan has a major insurance company serving as their TPA.  Now, they are paying for my Benlysta infusions at my new doctor’s office, instead of requiring me to do it at the hospital.  I never understood why they insisted I get them where it cost so much more.

Yesterday was my second visit with my new doctor, when she told me I was “already famous” in the Benlysta world.  I looked at her quizzically and asked, “really?”

She explained that she called the Benlysta “people” to coördinate my infusions, and once she started telling them about her new patient, they already knew all about me.  When they heard from her that I had been getting infusions at a hospital before coming to her, they knew immediately who I was!   They asked who my former doctor was, and sure enough, they confirmed it was little old me they were all talking about.

Photo by LA's Daughter-in-Law © 2013

Feeling weird about “fame”!
(Photo: LA’s Daughter-in-Law © 2013)

I have to say, this realization made me feel a bit weird.   I guess they all had a conversation discussing the novelty of my situation.  If I remember her story correctly, they told her I was the only patient they knew who had to get Benlysta infusions at a hospital.  Then, I filled her in about how much better the in-office infusions were for me and my employer.

As we discussed costs, it astounded her that the hospital had charged three times the normal price for the infusions.  Now, instead of the $13,000 the hospital charged for my January infusion, the total cost to my insurance company for February’s in-office infusion was about $3,500!  Even at this lower (normal) price, Benlysta is expensive, just like other biologic drugs.  The astounding extra my insurance paid over the 2.5 years I’ve got Benlysta could have totaled as much as $250,000 to $285,000!  All I can say is, “wow.”

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No more parking costs!

Although there were no copays at the hospital, now there are office visit copays of $35 for each infusion.  I can handle that!  Since I no longer have to spend money on gas to drive clear across town twelve times each year, or to pay for parking at the hospital, everything should pretty much be a wash in my out-of-pocket expenses.  Eliminating parking fees for a year will pay for 4 of the infusion copays!

The real bonus is to my self-insured employer.  The lower infusion costs will save an annual amount that could pay for at least two standard clerical co-worker salaries.  As a serious public servant and steward of taxpayer money, that pleases me greatly.  I guess the number-crunching bean-counter part of me that manages my department budget is doing back flips over this realization.

In a post-recession economy, where you get Benlysta could really make a big difference!

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