Lupus and the recurring visit of the sloth

Return of the sloth

Waking up in the quiet of a Sunday morning with a deep relaxed sigh, stretching fingers brush the euro pillows that serve as a headboard. Suddenly realizing that there was no husband in the house, a foggy lupus mind rushes back a faint realization he was here, and dressed for church.  He had stood there at the foot of the bed, wearing a bold blue and yellow Jerry Garcia tie saying, “honey, I’m leaving.”  As he headed out to play piano for the early morning choir practice, Sunday morning sloth mode had overcome the sleeper, who didn’t wake up again until this very moment.  What time is it, anyway?

Oops!  A soprano spot in the choir was now standing empty, and a husband sat through the church service temporarily stood up by a “sloth” who still slept at home in bed.  With another resigned sigh was realization that the morning had been spent sleeping through church, succumbing to the overwhelming fatigue tugging on my body.  Grateful for the stolen extra sleep, the fatigue was lighter than earlier when I almost woke up, but there still was a measure of frustration over failure to be responsible and “in my place” on a Sunday morning.

The Question – sleep or laziness?

To an outsider looking in, it is no wonder the conclusion about this type of slothful behavior is a blatant proclamation of “laziness”, but the enlightened few who really understand autoimmune disease know it is something different.  Sloth mode overtakes most autoimmune patients with regularity, but after a Benlysta infusion, the effect for me is much greater than normal.  There are always a few days of overwhelming, consuming fatigue, sleepiness, and utter exhaustion that set in during weekends that follow monthly Benlysta infusions for my lupus.

Thankful that there are no other noticeable side effects from the Benlysta I receive every fourth Friday, I can live with the weariness that overtakes me afterward.  Many years before Benlysta was available for lupus, the only treatment that controlled by lupus was a combination of the cancer chemotherapy drug Methotrexate, a transplant drug Azathioprine, Plaquenil, prednisone, and a prescription NSAID.  Methotrexate caused nausea and extreme malaise for at least twelve to twenty four hours after each weekly dose, so a “little” slothful tiredness is a tolerable outcome, if not blessing, in comparison.

Return of humanness

Showering and letting the slothful sleep slide down the drain, the rest of the day was recovered and went on like normal.  Sunday dinner, out and about to play piano at a retirement center worship service, and then on to afternoon choir practice.  This evening, I joined my husband at church and filled this morning’s vacant spot with the other singers.  The sloth was left behind, at least until tomorrow, and the butterfly returned.  Although sometimes it reappears transforming me for another day into a Monday morning sloth, on Tuesday, it is certain full humanness (and butterfly-ness) should return and remain for the next four weeks.

 

Lupus Adventurer says goodbye to little canus lupus familiaris

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.

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.

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.

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.

Diagnosis and Treatment of Lupus: Fact #12 – Lupus requires multiple medicines!

Diagnosis and Treatment of Lupus:  Successful treatment of lupus often requires a combination of medications. A new treatment for lupus was approved recently, and nearly two-dozen clinical studies are underway to develop a full arsenal of treatments. My treatment plan and combination of drugs used to control lupus and its various symptoms has changed over the years to respond to the variations in my lupus activity, symptoms and organ involvement.

First, aspirin

Many patients with mild to moderate lupus are taking over-the-counter anti inflammatory drugs as a first defense in controlling the symptoms of lupus arthritis and its pain, stiffness and joint swelling. For years I was treated for arthritis of unknown cause, after repeatedly ruling out rheumatoid arthritis through many negative lab tests for it. My family doctor prescribed 10 aspirin per day, in trying to control my inflammation. This was about five years before my lupus diagnosis, when I was new mom in my mid twenties.

Next, Disalcid

Next, my doctor tried the drug Disalcid, after aspirin was inadequate and began causing bleeding from my mucous membranes.   Next, my doctor had me try many non-steroidal anti-inflammatory drugs (NSAIDs) bit I was unable to tolerate most of them. Naproxen caused sharp abdominal pain and Ibuprofen caused bleeding similar to the effects of aspirin.

Then, Sulindac

Eventually, my family doctor put me on an old seldom prescribed anti-inflammatory drug Sulindac because of my intolerance for all the other NSAIDs we had tried.  This was well-tolerated and seemed to control joint inflammation, and helped keep my knuckle joints from ballooning.  This drug was continued for over twenty years, even after my lupus diagnosis and treatment began with lupus medications, because it was still so well tolerated and effective.  Attempts to withdraw this anti-inflammatory medication over the years always resulted in the return of pronounced joint swelling.

Repeated steroid treatments

During those early pre-diagnosis years, there were recurring bouts of discoid raised skin rashes treated with topical steroid ointments and occasional oral and injected steroids.  The multiple use of steroids for the undiagnosed lupus symptoms became problematic, and the doctor began being concerned heavy recurring use of steroids was not medically responsible.  We were frustrated with no answer for my arthritis symptoms, mouth and nose ulcers, rashes and other symptoms before the diagnosis of lupus was finally reached.

After diagnosis, Plaquenil, Sulindac and Tylenol

First post-diagnosis treatments included Plaquenil, continued Sulindac, prednisone and extended-relief Tylenol medications.  For many years this was adequate with bursts of steroids or injections when symptoms would flare and increase from time to time.  There was a gradual worsening of my lupus over time, and eventually stressful life events helped trigger organ involvement in my central nervous system, peripheral neuropathy, liver and overall increased systemic inflammation, joint pain and broad spread lupus activity.

Eventually, Methotrexate and Imuran

For the next ten years, my treatment plan included adding weekly Methotrexate treatment and daily Imuran doses to control the more severe symptoms, but eventually even this combination of medications were unable to control my worsening liver and central nervous system symptoms.

Rituximab, remission and now Benlysta

I entered a clinical trial of the biologic drug Rituximab, and quickly entered into a five-year near remission of the worst of my lupus symptoms.   All my lupus medications were withdrawn except for baseline Plaquenil, occasional Tylenol and smaller short steroid intervention for occasional mild flares.

Recent stressful life events ended the extended remission, and recently the new biologic drug Benlysta became a mainstay of my lupus treatment.

Benlysta was approved by the FDA in March of 2011, and is the first new drug in over 50 years to be approved by the FDA for treating systemic lupus.  Prior to this, only three other drugs were FDA approved for systemic lupus:  Aspirin, Prednisone and Plaquenil.   I am currently receiving monthly Benlysta infusions and have experienced moderate gradual reduction in lupus activity with this medication.

Many drug combinations for lupus

Many other drug combinations are used to treat different lupus patients, and the drugs that they need change over time as their lupus activity and symptoms change.

To read more about drugs and combinations of therapies used in treating lupus, check out the information at the Lupus Foundation of America on this subject.

Lupus and Benlysta after 21 weeks

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.