One Patient's Positive Perspectives

three crosses in the sunset

Awestruck At This Thought

Creator, Maker, Holy God, He loves mankind He made,
with broken heart and His selfless act, coming to our aid.
Lost and broken fellowship, once briefly shared with man,
Now has a way to be restored within God’s wondrous plan.

Jesus Christ, both human child and Son from God above,
To bridge sin’s gap, he took on flesh in humble perfect love.
Come to fulfill what prophets told of why He’d visit earth,
He bore our sin, and shed His blood to bring us second birth.

Upon a cross of wood He died, on Calvary’s lonely hill,
To open Heaven’s door to all, to the humble “whosoever will.”
Christ came to seek and save the lost, not willing to lose one,
Suffering beneath the weight of our sin, redemption was begun.

In the grave three days and then, arisen as He said He would,
He paid sin’s debt and took our place, now His mercy is understood.
Christ did for us what we couldn’t do, He washed our sin away.
Call on His name, confess your sin, and believe He lives today.

New life in Christ starts humbly, too, just like His did that day,
Humbly accept God’s merciful gift, He is only one prayer away.
This marvelous offer, unmerited grace, we’re awestruck at this thought,
That by Christ’s priceless outpoured blood, our eternal life was bought!

By Lupus Adventurer
Copyright April 20, 2014

Empty tomb

Empty tomb

6.27 LUPUS WALK Master

Arizona Walk Postponed to September 27, 2014

Walk to End Lupus Now™

The Arizona 2014 Walk event has been postponed from May 3, 2014 to September 27, 2014 at Sunset (more to follow) and the location is also changed to a new venue, Scottsdale Center for the Arts on September 27th.

It is a beautiful and interesting venue in which to walk and will enrich our event greatly.  Last year’s Walk was phenomenal and we had over 600 Walkers – so we are looking forward to an even larger event this September.

We truly hope you will join us for this signature LFA event!!

This spring and fall, similar walks are taking place in cities all across America.  To find out more about the many other LFA Walk to End Lupus Now™ activities, visit www.WalktoEndLupus.org.

You can find out if there will be a walk in your area, and sign up for that walk as a real or virtual walker, and even organize your own walk team.

Joan T. Merrill, M.D.

Joan T. Merrill, M.D.

Patient Symposium

Due to postponing the Walk, the Lupus Foundation of America wants to offer another important program for our Arizona constituents, so we have put together a Patient Education Symposium for Saturday May 10th at the Marriott Phoenix Airport Hotel on 1101 North 44th St., Phoenix 85008.

This hotel is centrally located  off 44th North, just past Freeway 202, We have reserved the Yuma Room from 9 AM – 12 Noon and will be having the LFA Medical Director, Dr. Joan Merrill and our former Board Chair and Lupus Survivor (and motivational speaker and national consultant), Cindy Coney as the two main presenters.

We are working on securing a registered dietician/nutritionist and a wellness professional to round out the program.  This program is free and we hope that you will join us.

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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]

 

 

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Renovating Master Bedroom

Any home construction or redecorating project is a challenging undertaking, but with a chronic health problem, extra care is sometimes in order.  We are finally starting the renovating project in our master bedroom.  We postponed plans to redo our room for a couple of years while our daughter and son-in-law lived with us.  Then, with the holidays and my husband having two minor surgeries in the past couple of months, we waited a little longer to finally get into the renovations.

Backtracking a little – when the kids moved in, we moved into our guest room.  The kids are back on their feet and moved out before the holidays.  A few weeks ago, we ripped up the bedroom carpet, and were surprised to find old-fashioned linoleum tiles loose on top of a layer of dried up “black tar” adhesive.  We found some old water damage under the flooring that looked and smelled like a small area of possible black mold under the closet carpet, and my husband’s research indicated there could be a possibility that the popcorn ceiling might have asbestos in it.

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Research to Avoid Health Risks

With my lupus, and my husband and I both having asthma, we both have challenged immune systems.  We did some extra research ahead of time to avoid unnecessary health risks, especially as we contemplated the removal of very old construction materials.  Removing it was a doubly good idea, for dust reduction to help our asthma, and for removal of any possible asbestos.  Besides, the ceiling surface appeared to have two or three coats of previous paint, and the “experts” in our lives assured us that another coat of paint would make it fall down in clumps, anyway.

So, I researched black mold clean up at the FEMA website, and picked up sealing safety goggles and two Niosh N-95 masks that would protect our lungs from both possible “evil” substances.  After shopping for boxes of new flooring, underlayment, edging, paint and all the other supplies we thought we would need, we finally started the work today!

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Donning goggles and masks

Donning our buggy eye wear and masks, this afternoon we started our project in earnest.   First, we stripped of the offending closet carpet, stashing it into sealed garbage bags for the dumpster.  I scrubbed and disinfected the blackened stinky carpet floor with pine oil cleaner followed by bleach water, according to the FEMA black mold clean up guidelines.  Then, my husband climbed a ladder, as he sprayed and scraped the ceiling.  What a mess!

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Popcorn ceiling fell away

The popcorn ceiling fell away as he worked in powdery dust and large damp clumps dropped onto the disposable tarp lining the bedroom floor.  I refilled the sprayer as needed, and cheered him on from my perch on a folding chair.  After the last of ceiling popcorn was down, we rolled up the tarp into two heavy “packages” the size of large garbage bags and stashed them in the trash.

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Feet up — at “work” encouraging

Now, we are ready for the next steps in our project, retexturizing and painting the ceiling and walls, installing the wood flooring that awaits in a stack of boxes, installing new closet organizer components in the walk-in closet, and replacing faucets in the master bathroom.  Then, I’ll find some new curtains to match the new color scheme, and we are planning a new wall mount flat screen television.

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Wood flooring waiting to be installed

Since we donated our previous guest room bed to our departing “house guests,” we will hunt down a new bed and relegate our current one to the guest room.  We look forward to the weekends ahead when we will finish our renovation and prepare to move back into our room.  When this project complete, this will be the last the room in our house to become asthma friendly — without dust mite habitats above and with only wood or ceramic tile floors below.

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Cleaning floors with Vac & Steam

We will finally be living in a totally carpet-free zone!  I clean the other floors with a vacuum/steamer.  An asthma friendly home helps me with my lupus, too, since flares of my asthma tend to make me more susceptible to flares of my lupus.  The two conditions tend to piggy back on each other triggering each other into flare.

Today, we felt like we were living out an episode of “This Old House,” except in life, you have to do the work yourself instead of sitting on the couch, watching someone else do it.

 

 

 

 

 

 

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Sleepy little friend

Just about sixteen years ago, long before Benlysta, before Rituxan, and shortly before the beginning of Methotrexate and Imuran, little Rudy joined our household.  He was the result of the barter system.  My husband taught piano lessons to the two sons of a couple we knew who raised purebred miniature long-haired dachshunds.  After teaching enough lessons to equal the discounted price of a well-bred puppy, little Rudy became the newest addition to our home.

Lupus and a dachsund's perspective, I want to be like that!

Performing for a treat

Over many years of watching our children finish growing up, graduate from high school, get married and now our four grandchildren, Rudy has been there, friend to all who knew him, and companion to many.  When I spent months on strict bed rest with massive lupus flares and an unstable spine, he was a little puppy who curled up next to me, comforting me in my intense persistent pain.  We bonded, and I guess I became his surrogate people “mom.”  Any time I felt awful or was home sick with lupus woes or pains, there he would zoom, right to my side to curl up near and comfort me.

Each night as we arrived home, we saw his little head and ears flopping up and down through the window in the kitchen door, as he jumped straight in the air in excitement at our return.  His exuberance caused us to coin the expression, “jumping doggies” to explain many a gleeful moment.  His doggie cheerfulness had edged its way into our family conversations.

Lupus and a dachsund's perspective, I want to be like that!

Chewing on a ball

Yesterday, it was my last chance to comfort my little canine pal.  I spent some time yesterday morning with him, bathing my aging weak pup, gently brushing and grooming him and cleaning his kennel and bed.  As I left for work, he curled up in a fresh towel and snuggled down for a nap.  When my husband found him last night, he still was curled up just as I left him.  He seemed to have never moved or awakened from slumber, and my usual “have a good doggie day,” ended up my last goodbye to my little friend.

eyes closed and listening

Goodnight, Rudy…

Last night, he went to his final doggie resting place, wrapped in the same towel and snuggled into the warm spring soil, several feet below the turf of our backyard lawn.  We quietly planted him beneath his favorite spot in the yard, right where sunlight first warms the grass each morning.  So, with my husband holding a shovel and me holding a flashlight, in the darkness we quietly said goodbye to our faithful little family dog.

Goodnight, little Rudy, goodbye.

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By Donald E. Thomas, MD

The Lupus Adventurer is extremely pleased to introduce guest-blogger, Donald E. Thomas, Jr., MD, FACP, FACR, author of The Lupus Encyclopedia.  After Johns Hopkins University Press releases his book in May 2014, you can expect a book review here.

Dr. Thomas is an assistant professor of medicine at the Uniformed Services University of the Health Sciences and teaches rheumatology at the Walter Reed National Military Medical Center. He is a practicing physician and currently serves as a member of the Medical-Scientific Advisory Council of the Lupus Foundation of America, DC/MD/VA chapter, and brings the authoritative medical knowledge to this discussion of lupus and its potential effects on the liver.

Photo by Lupus Adventurer © 2013

Photo © 2013
by Lupus Adventurer

While only a small percentage of systemic lupus patients will develop liver involvement, this subject is of special interest to the Lupus Adventurer. When lupus liver problems started, it was a major treatment turning point. Liver problems began after ten years of taking methotrexate and Imuran (azathioprine,) and it took another year and three doctors to confirm it. After stopping these drugs, eventually infusions of an investigational biologic drug, Rituxan (rituximab) during participation Phase III clinical trials controlled the lupus hepatitis.

Now, after receiving Benlysta (belimumab) for the past couple of years, both liver and lupus remain under excellent control. Past posts have discussed lupus liver-involvement from a patient’s perspective, and now, Dr. Thomas shares his outstanding article with us about Lupus Hepatitis from a physician’s view.

Lupus Hepatitis

By Donald Thomas, M.D.

Three Major Causes of Hepatitis

Hepatitis simply means “inflammation of the liver.” Many of us immediately think of a contagious hepatitis when we hear the word hepatitis, but the reality is that there are numerous causes of hepatitis. Viral infections (especially hepatitis A, hepatitis B, and hepatitis C) can be contracted from other people and cause hepatitis, yet medications (especially medicines related to aspirin) are the most common cause of hepatitis in people who have systemic lupus erythematosus (SLE). Since Lupus can “attack” virtually every part of the body, SLE can directly cause inflammation of the liver itself. That will be the primary subject of this article.

The liver is a very large organ that lies in the upper right side of your abdomen. Most of it is located beneath the lower ribs on the right side of your body. It has many different jobs to do in order to keep us healthy. These vital jobs include filtering waste products from the blood, removing bile, storing energy for the body, producing important proteins, and even producing important hormones.

Liver Inflammation

Image courtesy of dream designs / FreeDigitalPhotos.net

Image of human liver
courtesy of dream designs
FreeDigitalPhotos.net

With mild inflammation, most people do not feel ill at all. Mild inflammation of the liver (hepatitis) may simply cause abnormalities with some of the liver blood tests, especially ALT, bilirubin, and alkaline phosphatase levels. Some or all of these blood tests can become elevated due to hepatitis. However, these blood tests may become elevated for reasons other than hepatitis.

For example, ALT can become elevated due to inflammation of the muscles; bilirubin can become elevated in some types of anemia, and alkaline phosphatase can become elevated due to bone problems. However, elevations in these test results are usually the first clue that there may be something going on with the liver. It is up to the doctor to figure out what is causing the elevation, and this usually involves additional testing.

If hepatitis is severe, then the function of the liver can become compromised, leading to problems such as fatigue, loss of appetite, and even jaundice. (In jaundice, symptoms include the whites of the eyes and skin turning yellow due to too much bilirubin in the blood stream). If hepatitis becomes severe and a lot of the liver becomes irreversibly damaged, scar tissue can replace the damaged liver tissue. We call this condition “cirrhosis”. People who develop cirrhosis may end up needing a liver transplant if it becomes severe enough.

Liver Blood Tests

Image courtesy of Victor Habbick / FreeDigitalPhotos.net

Image courtesy of Victor Habbick / FreeDigitalPhotos.net

All patients who have SLE realize very early in their illness that they need frequent blood and urine tests to monitor how their lupus is doing, and to monitor their medications. It is important to ensure that no side effects are occurring from the medicines. Mild elevations of the liver enzymes, such as ALT, are very common in people who have SLE. The most common cause is from the medications that we use. Generally, small rises in ALT level from medications is perfectly fine, and usually doesn’t cause liver problems except for slightly abnormal blood tests. However, if they become too high, then sometimes the offending medication must be stopped or the dose lowered.

However, when we (doctors) note elevations of liver enzymes more than once or twice, we usually do additional tests. We need to make sure it isn’t something other than a mild medication effect. We will usually ask the person not to drink any alcohol (which can raise the liver enzymes), and request lab work for other potential causes, such as viral hepatitis B and hepatitis C. We usually order additional tests to make sure other causes of hepatitis are not present such as genetic causes (e.g. hemochromatosis). Sometimes, we may do imaging studies such as an ultrasound or CT scan of the liver to see if there is any “fatty liver” or “gall bladder stones,” or other potential causes that imaging might reveal.

Autoimmune Hepatitis

By NLM [Public domain], via Wikimedia Commons
Azathrioprine photo
by NLM [Public domain],
via Wikimedia Commons

Although rare with SLE, autoimmune hepatitis is one consideration. This is a disease where the immune system attacks the liver and causes inflammation. Without proper treatment, it has a high rate of progression to cirrhosis. We usually order antibodies such as mitochondrial, actin, liver/kidney microsome, and smooth muscle antibodies to look for this possibility. It is treated with some of the same medications we use to treat lupus such as steroids and azathioprine (Imuran).

Approximately 1 out of 20 people (5%) who have SLE will develop inflammation of the liver directly due to their lupus. We call this “lupus hepatitis.” It usually shows up with elevations of the liver blood tests mentioned above. After we “rule out” other causes (as discussed above), the only way to know if someone has “lupus hepatitis” is to get a liver biopsy. It is important to realize that “autoimmune hepatitis” discussed in the previous paragraph is a different problem than “lupus hepatitis.” Although both are due to the immune system causing inflammation of the liver, “autoimmune hepatitis” more commonly can be severe and progress to cirrhosis. “Lupus hepatitis” typically responds to treatment more easily.

Liver Biopsies

A biopsy is a medical procedure where the doctor removes a small piece of tissue from the body to study it under a microscope and see what is going on. A liver biopsy is generally a very safe outpatient procedure. The doctor numbs the skin and soft tissues covering the liver, and then inserts a biopsy needle through the numb area to remove small pieces of liver for analysis. Most people are free to go home within a couple of hours after the procedure is finished. 3-7 days later, the results of the biopsy are usually ready.

Image courtesy of arztsamui / FreeDigitalPhotos.net

Image courtesy of arztsamui / FreeDigitalPhotos.net

The biopsy results seen in “lupus hepatitis” are very nonspecific. often showing liver inflammation that is seen in many different causes besides lupus. The primary reasons for the biopsy are to ensure that other causes of hepatitis are not present (such as hemochromatosis), to assess how much inflammation is occurring, and to ensure that there is no scar tissue from cirrhosis.

Lupus Hepatitis is Usually Controllable

By NLM [Public domain], via Wikimedia Commons
Prednisone photo by
NLM [Public domain],
via Wikimedia Commons

Fortunately, “lupus hepatitis” tends to be a mild condition. In today’s medical environment almost everyone with SLE is treated immediately (hopefully) with medications such as Plaquenil (hydroxychloroquine), so lupus hepatitis is not very common. When it does occur, it tends to be mild in severity. Prior to today’s treatments, or in cases where SLE is severe and not identified early enough, severe hepatitis may occur.

Hepatitis can potentially cause an enlarged liver (hepatomegaly), jaundice (yellow skin and eyes), and even cirrhosis. Severe cases may need strong immunosuppressant medications such as prednisone and azathioprine (Imuran). A study released in 2011 in the journal Lupus demonstrated that 14 SLE patients who were followed over 10 years did not progress to cirrhosis. This study confirms the opinion of many lupus experts, that lupus hepatitis is easily controlled in most of our patients.

Summary

Inflammation of the liver due to SLE (lupus hepatitis) is uncommon, only occurring in 5% of patients. With proper treatment, it tends to be mild, and rarely progresses to permanent liver damage (cirrhosis). It is initially picked up by doctors by observing elevated liver blood tests (e.g. ALT, bilirubin, and alkaline phosphatase levels), followed by other blood tests, imaging studies, and sometimes a liver biopsy in order to diagnose it.

By Donald Thomas, MD
lupusencyclopedia@gmail.com
www.facebook.com/LupusEncyclopedia

References:

Piga M, Vacca A, Porru G, P Garau P, Caulia A, Mathieu A. Two different clinical subsets of lupus hepatitis exist: mimicking primary autoimmune liver diseases or part of their spectrum? Lupus. 2011;20:1450–1451.

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Sunshine My Enemy

In our sky a yellow orb emits its brilliant light,
its hues combined, a streaming beam so powerful and bright.
Traversing space and vast expanse, illumining earthly day,
in eight minutes’ time arriving here, from a hundred million miles away.

The rays arrive in many types, some harmful and some good,
the earth responds from warmth it makes to yield our needed food.
Our bodies need its help to make Vitamin D we truly need,
produced by sunlight’s UVB, the sun performs a necessary deed.

Sunshine is my friend, its true, and an enemy at times, as well,
those same productive rays of light can cause my joints to swell.
Within my skin an autoimmune reaction to UVA and B,
Burning, wrinkling skin over time, and triggering lupus flares in me.

Sunshine is my enemy, but sunshine is also my friend,
In doses small enough it’s good, if exposure can quickly end.
With sunscreen on, long sleeves and hat, I’m ready for some fun,
Cautiously I head outdoors for brief encounters with the sun!

by Lupus Adventurer
Copyright March 26, 2014

Sunshine is My Friend

Sunshine My Friend

 

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