Kudos to developers of new UV sun detection product

A visitor to my blog provided information today about a very interesting UV related new product website.  While usually extremely sparing on endorsement of specific products, this new product fascinated me in light of lupus sun sensitivity.  The Sunny Beadz jewelry product line was started in 2011 and was recently featured in gift baskets provided at the Grammy Awards in LA.

Beads in these necklaces change colors in the sun and presence of UV light, becoming increasingly vivid colors as the UV intensity increases.  Kudos for the creative application of technology and sun protection ideas by the Sunny Sleevez company, that also produces arm protection UV blocking “sleeves”!

Check out their website, and the link below for more information about their purple butterfly UV color change necklace and other UV detecting and protection products.

sunnybeadz.com

25 weeks of Benlysta

Today marks the 25th week since the beginning of Benlysta infusions for my lupus, and this morning I will receive the eighth treatment.  Some of the reserve in my enthusiasm from a few weeks ago has ebbed, and I am feeling especially well right now.  My lupus symptoms have quieted considerably, even during a recent trip out-of-state.

Feeling pretty good!

On my trip, there were sick people all around me, and people who were very sick back at home.  I did not catch the stomach bug nor bronchitis that were plaguing my family in both states.  Skating through the week with merely a runny nose and head cold, except for the dripping, I did not even feel sick.  Still, my asthma did not flare and my lupus has remained quiet.

I am feeling pretty good as I head out to my eighth infusion scheduled for later this morning.  Praising God for a wonderful sunny day!

A few images of my grandchildren, including the newest member of our family…

Lupus Adventurer boards an airplane...

This morning, Lupus Adventurer boards an airplane and flies out to visit her son, daughter-in-law and 3.99 grandchildren for a week.

Any day, her daughter-in-law is expecting the birth of the tiniest new baby girl in our family. Lupus Adventurer will be hugging her grandchildren at every chance while visiting with family in an internet-free home.

She is looking forward to attending church with her son’s family, where he is an associate pastor of a baptist church. It will be enjoyable to hear him lead congregational singing and direct the church choir, as well as enjoying the opportunity to hear her 6-year old grandson practice for his piano lessons.

Offline until Valentine's Day

A post or two might happen to sneak out from the local Starbucks or Barnes and Noble if her Nook tablet happens to get into a writing mood over a cup of cafe mocha or latte.  She will be returning home on Valentine’s evening

Offline until then…

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.

LFA's Lupus: Learn from the Experts Series for 2012

The Lupus Foundation of America has announced the new dates in the 2012 – Lupus: Learn from the Experts series educational seminars about living with lupus.  In 2011, this series of online seminars featured several outstanding speakers from among the world’s leading lupus experts and provided much-needed education about lupus.

The new 2012 seminars are in webinar format, and continue with free access for viewers participating from their home computers, and include seven new topics selected after LFA reviewed participants’ feedback.  This year’s seminars will be a “must see” item for anyone with lupus, for their families, caregivers and loved ones.

These seven dates are going right onto my calendar this week!  I  recommend them to anyone else who has an interest in learning more about these important lupus-related topics, right from the real experts:

Nutrition, Diet and Exercise on Thursday, February 16th at 2:00 PM EST – Joe Raphael, DrPHc Register for the webinar

Pregnancy and Fertility on Thursday, April 19th at 2:00 PM EST – Eliza Chakravarty, M.D., M.S. Register for the webinar

Coping and Living with Skin Lupus on Thursday, June 7th at 2:00 PM EST – Victoria Werth, M.D. Register for the webinar

Social Security Disability on Thursday, July 12th at 2:00 PM EST – Sheri Abrams, Attorney at Law Register for the webinar

Parents Caring for Children with Lupus on Tuesday, September 11th at 2:00 PM EST – Emily von Scheven, MD Register for the webinar

Lupus Treatments on Thursday, September 20th at 2:00 PM EST – Murray Urowitz, M.D., F.A.C.P., F.R.C.P.C Register for the webinar

Coping and Living with Fatigue on Thursday, November 1st at 2:00 PM EST – Afton Hassett, Psy.D. Register for the webinar

Dates going onto my calendar right away!

The Lupus Foundation of America also has many free excellent recorded webinars in this series from 2011, that are still available to view on-demand at their website.  Visit the Lupus Foundation of America website to watch sessions from the 2011 series.

Click here to watch past recorded seminars in the series.

[UPDATE NOTE:  The first webinar is already full and registrations are being taken for a waiting list.  Please be sure to sign up right away for any of the 2012 webinars you want to attend.  The later sessions are not full yet.  LA 2/1/2012]

Post Infusion infection

Friday morning started with a 20 minute drive on the freeway to visit my rheumatologist, and ended with a stop for burgers, soda and fries.  In between, there were conversations with medical staff, a nice long visit with my doctor, and the administration of a hefty Kenalog and Celestone steroid injection.  A lupus flare had built up strength all week, while my energy waned.

After my Benlysta infusion on Friday last week, early this week Monday morning began with a burning sensation in my chest from another new case of bronchitis.  Asthma flared, large and small airways narrowed, and mandatory phone calls to my family doctor and rheumatologist were placed.  By the time of the rheumatologist visit, additional lupus flare symptoms piled up on top of the bronchitis: new discoid rashes on hands, forearm, forehead and hairline, a huge new infected mouth ulcer, bilaterally inflamed hand joints, growing malaise, and increased mental clouding and confusion (so much so that everyone around me was talking about it and starting to worry.)

Dust on the piano and coffee tables

Along with the physical lupus symptoms, the house was soon evidencing a few of its own… a pile of unopened mail on the desk, a white tile kitchen floor that really needed mopping, overflowing laundry baskets, an emptying fridge, and record dust fall measurements on the piano, hutch and coffee tables.

Outside, there was plenty of evidence of the flare, too.  Wednesday night ended by driving my vehicle right into the stucco wall bordering the driveway at the property line, grossly misjudging the distance and depth while turning into the driveway.  The first clue that I’d hit the wall was the sensation of the car vibrating and the sound of crunching stucco grinding into the vehicle rear quarter panel.  Then, my Grand Caravan was unable to move any farther forward because the corner of the stucco wall was wedged deeply into the side of the vehicle.  The damaged car was backed out into the street again to get it free from the wall.

Steroids have their place in the treatment of lupus.  A couple of days later, my doctor and I decided that I would not continue to drop my daily prednisone dose any farther, so I would stay at 5 mg. per day for the time being.  A steroid injection quickly began to make me feel better, so much so that everyone was soon talking about how the “E.B. effect” had set in, and teased me lovingly throughout the next day.  I became the object of much amusement to my family who describe the prednisone induced phenomenon as the “Energizer Bunny Effect”.  They have observed it many times before, after a surge of steroids was employed to shut down one of my previous lupus flares.  They love me, but think the way steroids affect me is funny!

The EB Effect in Full Swing

The behavioral impacts of feeling gleefully better and perky after steroids is a shock and often starkly noticeable, especially to the people nearest.  For them and for me, it was truly amazing to see and feel the difference!  Up before the sun rose, I was out and about buying food for a big Saturday breakfast, making coffee, scrambled eggs, cinnamon rolls and bacon before the rest of the household was even thinking about getting up.  The bacon aroma wafted back through the house to the bedrooms, and drew the sleepy occupants out to the kitchen.

They wiped slumber from their eyes and stood staring in disbelief, as they watched their suddenly transformed breakfast cook.  Just the night before, she was hurting, fatigued, very confused and struggling.  That next morning, their breakfast cook was unbearably gabby, perky, fast-moving and smiling while she  juggled skillets, knives, wire whips and a spatula!  They all concluded and decreed by consensus that the “E.B. Effect” was officially in full swing.

Downside of the EB Effect

As the hours passed, the E.B. Effect demonstrated its downside and aftermath.  18 hours of pep and vigor were followed by sheer exhaustion.  The perky little cook of the morning flopped down in a chair at day’s end, and collapsed.  Then, she awoke the following morning in full CNS lupus flare symptoms, and spent all of Sunday home from church in bed, sleeping, resting and recuperating from sheer exhaustion, bronchitis, underlying lupus flare, and ill-advised over activity in the face of the previous day’s false prednisone induced “energy.”

She had forgotten the age-old biblical adage, especially wise and proper after steroid injections, “moderation in all things!”

The Frailty of Life

This weekend I read a moving account of a young college senior with lupus, Ariane Patterson, who suffered a fatal heart attack last week in the middle of her college class. It was her 21st birthday that day, and seven hours earlier, she sent out a Twitter message to all of her friends, “Thank you God for another year of life.”

We never really know when the unexpected will happen, interrupting our lives, changing them forever, or perhaps even closing the door on this life and opening the door into the next.  It seems Ariane had a clear handle on her faith, and understood the frailty of her life.  Although most lupus patients do not suffer life-threatening symptoms like Ms. Patterson, many may understand a little of what she was feeling that day.

On milestone dates, anniversaries, and at other memorable times, these are good times to be thankful: to remember the blessings we have, to focus on the good things around us, to recall the things for which we are thankful.  Even the simple and obvious things should not be taken for granted.  Even life itself, is a gift.  I think Ariane understood that!

Remembering and being Thankful

I would hope I remember daily to thank God for my life, for another day, and for the amazing gifts I have. A loving husband, wonderful children, grandchildren, enough provision to meet my real needs, friends, family, a great church, a nice home, and a loving, forgiving God.

I must echo the words of this insightful young college girl with lupus, so simply and profoundly expressed. She was able to finish that fateful day last week by thanking her God in person. The senior campus minister related that an index card found in her backpack contained a note, “God, whatever you want me to do today, I will do it and whatever you don’t want me to do today, I won’t.”  How full her heart must have been to be able to personally express her thankfulness for life to the Giver of life before the day came to its end.

Remembering Ariane Patterson

If you would like to read more about Ariane’s story in a North Carolina newspaper, please click here.  To see pictures of Ariane, click here to view a photo tribute on the web page of the private Christian college she attended.

Looking ahead at 2012, I want to remember daily to thank God for each new day of life!  There have been a few close calls in my past, when I did not know which side of glory my day would end on.

Yes this is a sobering story, but something about Ariane just touches me and reminds me to cultivate and water my own thankful spirit within.

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.

Lupus Awareness Opportunity in Published Article

Today brought a very special honor as the national publication of my professional certifying association published my article that included an expanded discussion outlined by my acronym describing “LEARNERS” (first published here in this blog on November 1, 2011.)  See,  Lupus, and adventures in learning.

Their editorial staff contacted me a couple of weeks ago for comments about my exam preparation and study methods, requesting tips they could share with other members preparing for the challenging exam.  The upcoming issue was slated for an article encouraging the over 10,000 members of our international association to pursue certification.  Currently, there are less than four hundred persons with this certification.  I am the second government employee to gain this certification, and the only local (city/county/state) government employee.  (The first  is the director of a federal government office in Washington, D.C.)

I was glad to help out, and shot out a quick email reply telling the editor I would reply later that evening or early the next day, in time to meet her publisher‘s approaching deadline.

After first trading emails with me refining my understanding of the information they were seeking, the editor followed blog links to a couple this blog’s posts about my exam preparations.  It was important for her to know comments would probably be drawn from my earlier blog comments, to quickly give the information she sought for her article.

The editor visited this blog

After receiving my reply email, she visited this blog and read several posts related to the exam.  After learning more here about my lupus, she expressed heightened interest in sharing my story, commenting that she appreciated how lupus challenges made the story of my success all the more “sweet.”

Last week, the editor sent a message advising me that the editorial board liked my story so much, they wanted to use my whole email response as the basis for an entire article.  She asked for a high-resolution publicity photo for the article, needing it in time to meet her early publishing deadline the next morning.   Since it was already late in the evening when I got her message, my employer’s public information staff had gone home for the day.  So, instead of a new photo, I hurriedly sent off the basic head-shot portrait saved on my work computer in a couple of different computer file formats.

You've Got Mail

All day today after the article was published, numerous emails came in with congratulations of my success in the recent exam and for my article’s publication.  Additionally, a request came in today to republish my article in the association’s state publication.

These are the other earlier blog posts telling parts of my story about preparing for and taking the recent professional certification exam:

August 11, 2011 Lupus adventures studying for a professional exam

September 12, 2011 Lupus and facing a professional certification exam

September 14, poem titled Lupus adventure, tomorrow the big test

Since editors of news publications tend to shy away from re-publishing material derived from blog posts, I am especially humbled and honored for the association’s interest in sharing my “learning and lupus” story.  I am especially pleased with the opportunity to assist other members of my profession, while also helping raise lupus awareness through its mention in a national publication.