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Posts tagged ‘Peripheral neuropathy’

Lupus neuropathy on the way to breakfast

Breakfast Feast

We had a wonderful time this morning hosting breakfast for the family clan, and celebrated three birthdays over a brunch feast.  Getting ready for company last night after working all week was a bit of a challenge.  Against better judgment, I ended up staying up after midnight putting the finishing touches on my house.  I really like to make sure guests in my home feel comfortable, and for me that means making sure things are orderly and clean.

Where’s the balance?  I’m really not sure, but I keep trying to find it.  I must admit, last night was not balance!  At midnight I got the fruit tray ready, washing the grapes, strawberries and pineapple chunks,  and set the rinsed bananas out for the morning, leaving just enough room on my fruit platter to pile up some halved bananas.  By the time I was sure everything was “done, it was a couple of hours after midnight. ”

Blame the dog?

After I finally found myself in bed in the dark, I realized I had stayed up late enough that peripheral neuropathy leg pain rapidly kicked into full gear.  Although I tried to fall asleep, it just wasn’t happening!

After laying awake the dark, I became annoyed as our little dog at the end of the bed kept sitting on my painful legs, shifting around and making continual noises.  Most nights we let him lay quietly on his blanket on the end of the bed. while we watch some TV and occasionally nibble on popcorn.  He usually attempts to be a good little dog, but is often beside himself with exuberance until we break down and toss him a piece of popcorn.  If he is quiet and we fall asleep, once in a while he gets the prize of sleeping on our bed all night.

However, after his prolonged and irritating antics during my slumber-less night, it wasn’t long before I ushered him swiftly to his kennel and crawled back in bed to try again.  Maybe I could blame the problem on the dog!

Soothing sound of waves

I picked up my Nook Tablet from the bedside table and found its “white noise” application. After sampling several noises of birds, wind and waves, I settled on surf rhythmically crashing into some unknown shore.  It was soothing, and if not for the neuropathy pain, I would have probably slipped away into pleasant slumber, dreaming of  driftwood on the make-believe surf.  In the long darkness, the white noise timer shut down an hour later, but still  I was sleepless and enduring painful surges of persistent neuropathy pain.

Calming sound of rain

Wary that taking strong medication for my pain would make waking up in time for 8:00 a.m. company difficult, I finally got out of bed a second time looking for an alternate solution.  A microwaved quick latte made with decaf tea, warm milk and honey actually helped increase my wish to sleep, but the neuropathy still was relentless.  As a last resort, I went out to my leather chair and reclined with my Nook in my lap playing white noise sounds, this time of a calming rain shower.  I finished my soothing latte and decided to sit out the night in my chair, since it was the most comfortable and close to sleep I had been in two hours.

Rested enough to enjoy breakfast

At last, sleep overtook me and brought three hours of precious sleep.  My husband found me asleep in the living room at 5:30 a.m. and woke me gently.  He encouraged me to finish  slumbering back in the comfort of bed.  Now I was finally sleepy enough to catch a few more serious winks on my pillow.  Morning came much too early for my tired lupus-challenged brain, but at least, I had enough sleep to thoroughly enjoy our early morning family gathering.

As for tonight, no midnight housework or cooking.  Instead, for me it is “early to bed” after such an “early to rise” morning!

Perplexed about Lupus prescriptions and formularies

Waiting vacation  mail

When we arrived home from vacation last week, one of the waiting pieces of mail was from my insurance company.  They had made a pre-certification determination on my rheumatologist’s prescription for peripheral neuropathy caused by my lupus.  My doctor and I had discussed my increasing need to use pain medications to “drown out” the neuropathy pain to get to sleep.  My doctor had agreed with me that maybe there was a better way to deal with the neuropathy, and prescribed Lyrica (pregabalin).

All I know is I need rest, and don’t like the idea of taking narcotic or other habit-forming drugs on a frequent basis, just to escape the  night-onset neuropathy pain that is disrupting my sleep.

Read a little more about lupus neuropathy from LFA webinar transcripts by a leading neurologist, Robin L. Brey, M.D.*:

Robin L. Brey, M.D.

The American College of Rheumatology has identified 19 different ways that lupus can affect the nervous system, and the specific signs depend on which one of these it is. Some common big categories include memory loss, seizures, stroke, depression, anxiety, headache, and neuropathy.

In lupus, it [neuropathy] is usually caused by inflammation or vasculitis of the nerves, but peripheral neuropathy is most common in people with diabetes or kidney disease, both of which can be seen in lupus either due to disease activity or side effects to medications used to treat lupus. Often, neuropathy gets better and does not lead to something worse. Fortunately, nerves can regenerate once the cause of the neuropathy is found and treated.

We are not really sure how lupus affects the peripheral nerves exactly. In some patients, it is due to vasculitis, which is very serious and must be treated aggressively with “chemo” type drugs. In most patients, however, it is probably due to inflammation (similar to what you have going on in the joint when you experience arthritis) that is affecting the peripheral nerves. Fortunately, peripheral nerves can recover completely with the right treatment.


Reading the letter, I learned that my insurance company denied my doctor’s request for the Lyrica for a number of reasons.  First, it wasn’t listed on the formulary.  Then, they suggested that Neurontin, an anti-seizure medication, is available instead.  Interestingly, Neurontin costs about 1/4 the cost of Lyrica.  If diabetes or kidney disease were the cause of my neuropathy, they would pay for it without a problem.

My doctor wanted to see me 30 days after starting the drug, just a few days from now, but followup without taking the new drug seems somewhat pointless. I am not sure how to proceed, so my next rheumatologist visit will probably be used to come up with a new game plan for treating the neuropathy.

No FDA Approval for Lupus

I have comparatively great insurance, but still meet these obstacles in getting medications. I can only begin to imagine the difficulties people with medicare or other similar insurance plans have getting their medications approved. Neither Neurontin nor Lyrica are “on label” approved by the FDA for lupus neuropathy, and they cited some complex set of treatment and coverage guidelines as justification for denying the coverage.

I will accept this obstacle as a necessary step in determining the best course of action, realizing that the American medical and insurance systems are not for the passive or faint of heart.  I assume my rheumatologist will appeal the decision, so we will wait and see what he recommends from here.


* Dr. Brey is a Professor of Medicine in the Division of Neurology at the University of Texas Health Science Center at San Antonio (UTHSCSA). She is the Associate Dean for Research of the UTHSCSA School of Medicine and the Deputy Director of the Institute for Integration of Medicine and Science. Her research interests include the study of the relationship between antiphospholipid antibodies and stroke as well as neuropsychiatric manifestations of Systemic Lupus Erythematosus (NPSLE).

Dr. Brey now serves on the Executive Committee of the Scientific Advisory Committee for the Lupus Foundation of America (LFA) and the LFA executive committee to study lupus flares. Dr. Brey also serves on the American Academy of Neurology (AAN) Board of Directors and is the Chairperson for the AAN Public Relations and Media Relations Committee. She was the founding section editor for the Patient Page in Neurology and serves as the Editor-in-Chief of Neurology Now, the AAN publication for neurology patients, their families and the lay public.

Read Dr. Brey’s physician education presentation about Neuropsychiatric Lupus at and transcripts of Lupus Foundation of America webinars from which the above quotes were taken, at Neurology/CNS & Lupus and Neurology and Lupus.

Lupus and Benlysta – One year rheumatologist check up with B+ Benlysta grade

One year of Benlysta

This month will mark one year since starting Benlysta infusions for my lupus.  As mentioned before, my lupus is thankfully now a milder, gentler “monster,” and my overall health has improved markedly.  Most importantly, my symptoms of central nervous system involvement and my energy levels have greatly improved.  Now, my cognitive function is much more stable, my short-term memory has vastly improved and my analytical and problem-solving mental processes are “back.”  I have really enjoyed overall improvement in my ability to complete mentally challenging essential functions of my job as a government law office administrator.  Benlysta helped me continue working.

The progress of lupus improvement from monthly Benlysta infusions was slow and moderate, but cumulative.  At the one-year milestone, looking back at the state of my health then compared to now, there is an unmistakable difference.  In the eighteen months before starting Benlysta, I had come of near remission and my overall condition was deteriorating steadily, and was again threatening my work.  After a few months on Benlysta my lupus quieted enough that recurring steroid bursts were not needed, and my daily maintenance steroid dose was cut in half.

Before Benlysta

Before Benlysta, my worsening lupus symptoms were many:

  • CNS lupus was extremely flared w/ increasing cognition, memory and analytical deficits
  • fatigue and malaise were overwhelming
  • joint pain and inflammation levels were high
  • gnawing “deep bone pain” in the long bones of my arms and legs
  • horribly itchy lupus rashes were out of control on my hands
  • mouth and nose ulcers were almost constant
  • malar butterfly rash, mostly showing up “peekaboo” more in the mornings and fading at night
  • sjogren’s syndrome was  very active in mouth and eyes
  • onset of intense peripheral neuropathy pain almost every night
  • insomnia due to neuropathy symptoms

Now, after one year of Benlysta infusions, my lupus complaints are fewer:

  • pesky, but much milder neuropathy pain several times each week
  • insomnia from neuropathy is much less frequent
  • arthritis inflammation in my hands running amok
  • a handful of random discoid lupus rashes come and go on my hairline, face, neck and arms

Benlysta gets B+ grade

So, the doctor is continuing my treatment with Benlysta infusions, and is very pleased with the improvement of my lupus.  Although we both originally hoped in vain for approval of Rituxan, because of my past dramatic improvement from using that biologic drug, that is old history.  Now, Benlysta has done a good job of quieting my lupus and improving my health.  If I were to rate Benlysta’s performance over the past year with a letter grade, it would definitely earn a B+ rating.  [Although Rituxan comparatively earned an A+, the insurance company would not pay for it.]  Benlysta’s B+ is an acceptable, welcome outcome!

Sulindac for inflammation

I am re-starting the anti-inflammatory prescription drug Sulindac for my arthritis inflammation.  This is my NSAID of choice, since I cannot take over-the-counter aspirin, motrin or naprosyn due to severe adverse reactions.  I took Sulindac successfully for most of 25 years, and it very effectively controlled ballooning hand knuckles.  For the first time in years, I was able to stop taking it completely for the five years following my Rituxan infusions.  It is time to start taking it, once again, since Benlysta is not effective controlling the arthritis inflammation of my lupus in my hands.

Follow Up in 4 weeks

To address my current problems with peripheral neuropathy, my rheumatologist prescribed Lyrica (pregabalin) to help reduce nighttime nerve pain, without having to resort to taking powerful pain killers to get to sleep.  I was surprized when I my pharmacist told me that Lyrica is not on my insurance formulary, and the drug requires precertification.  I cringed at the $350 it would be without my insurance, so my pharmacist contacted my rheumatologist to get the pre-certification process started.  Hopefully, my insurance will coöperate and the  approval will go quickly.  I will follow-up with my rheumy in four weeks.

Lupus neuropathy in the night watches

neuropathy intrudes into sleep

The onset of lupus neuropathy is never welcome, and interrupts some important times of rest in lives of lupus patient it affects.  At a patient’s most weary moments, this short-circuiting nerve pain and irritation may flow in disconcerting waves through thighs, knees, calves and feet.  For me, neuropathy sometimes comes on suddenly in the night watch, in the wee hours of the morning between midnight and four in the morning, intruding into what would otherwise be a restful, much-needed night’s sleep.

Neuropathy that wakes me is usually too intense and pervasive to ignore, it must be confronted.  Sometimes, when it strikes before bed time, I am able to rush to bed and fall asleep ahead of its full onslaught.  Other times, after sleeping a while restfully, it intrudes into my sleep like a robber who suddenly wakes the house.

waking realization of pain

My first waking realization is the pain in my legs and feet, and the gnawing persistence with which it wakes me.  I don’t want to wake up, I want to keep sleeping!  But, once neuropathy begins during my sleep, there is no escaping it without interaction of some type.  Along with intense restless pain in my legs, an inner ache and distress grips my weary malaise-filled torso.  There is no position of comfort to be found, no direction to toss or turn that will relieve the distressing sensations surging through me in miserable waves.  Sometimes the discomfort extends to the back of my neck and gives me a dull headache.

Tylenol, Ultram, Tea?

Getting out of bed is my only bearable option.  Moving, walking and getting my wakened body into motion seems to temporarily drown out the sensation in my legs, like turning up the volume on a stereo to drown out a yapping dog’s piercing bark.  I walk through the darkened house trying to think clearly enough to come up with an idea for relief.  Tylenol? Maybe that will be enough.  Ultram? Do I have enough hours to sleep for it to wear off before I have to get up?  Hot tea with milk and honey? Maybe increasing my  L-tryptophans will put me to sleep naturally.  However, sometimes I try those things and go back to bed, only to lay in the dark for another hour still feeling miserable and waiting for relief that doesn’t arrive.

hymns in the quiet darkness

On the worst neuropathy night watches, sometimes I wander out to the living room in my bare feet and pajamas, and spend a half hour doing yoga exercises dark to the rhythm of my husband’s snoring from the other end of the house.  Sometimes, I am able to sit comfortably enough to read my bible or a book, but other times, it is necessary to redouble my efforts to distract myself and drown out the neuropathy “noise.”  On the very worst nights, I give up trying go back to sleep.  I sit down at my grand piano in the dark and turn on the piano lamp behind the piano’s lyre, open a hymnal and start playing.

There, in the gently lit corner of my slumbering house, I quietly play hymns into the early hours of the morning and turn my heart to heaven.  If I cannot stop the neuropathy, and I cannot sleep, I resolve not waste precious hours in bed awake and miserable.  Instead, if sleep becomes impossible, I would rather sit in the dark playing music to honor and commune with my Almighty, merciful and comforting God.  This way, misery is forced to yield to the joy of fellowship with God in my quiet refuge of peaceful musical worship.

verses on these thoughts

A few verses from the Bible touching these thoughts:

Lamentations 2:19  Arise, cry out in the night: in the beginning of the watches pour out thine heart like water before the face of the Lord.

Psalm 63:6 When I remember thee upon my bed, and meditate on thee in the night watches.

Psalm 104:33  I will sing unto the LORD as long as I live: I will sing praise to my God while I have my being.

Psalm 107:28,31  Then they cry unto the LORD in their trouble, and he bringeth them out of their distresses. Oh that men would praise the LORD for his goodness, and for his wonderful works to the children of men!

Living with Lupus: Fact #21 – Nervous system involvement

Living with Lupus:  More than 80 percent of people with systemic lupus will experience some type of nervous system complication. Nervous system issues in lupus range from mild confusion or memory loss to strokes, seizures, and vision problems.

Lupus brain fog

Lupus brain fog

Most lupus patients experience a general mental clouding that is often dubbed “brain fog” like that experienced by other people auto-immune illnesses like fibromyalgia and multiple sclerosis.  This is not necessarily due to Central Nervous System lupus, but is more a byproduct of the metabolic processes related to cellular apoptosis, or cell death.

In non-medical terms, the best that I understand this process is that a normal amount of cell death happens all the time, and then our body makes new cells all the time to replace the ones that grow old and die.  The dead cells are made up of molecules, proteins, genetic material and other biologic building blocks that become the body’s trash to throw out when a the cells die.  In other words, the pieces of broken dead cells become garbage in our body, or what is called “cellular debris.”

As our body works hard all night to sweep up the aftermath of cell death that happens while we sleep, the higher than normal rate of cell death in lupus creates a huge load on our body’s sanitation system, and the garbage gets piled up in our body.  One of the places that is noticeably affected by too much cellular debris is the brain, and it clogs up the normal processes and makes it harder to think clearly.  As a result, many people with lupus experience mental clouding, or “brain fog,” especially in the morning when other lupus symptoms such as arthritis are also most pronounced.

Morning fog lifts as the day goes on…

During a visit a few years ago to Anchorage, Alaska to attend a LFA conference about lupus, I had an opportunity to visit with Robin Brey, M.D., a neurologist who worked at the University of Texas Health Science Center in San Antonio and was president of the LFA, South Central Texas Chapter and chat with her about nervous system involvement of lupus.  Doctor Brey was quoted in a 2005 Lupus Now issue, explaining that “cognitive dysfunction definitely is the most common symptom of CNS involvement that she sees.”

“The way I relate to the term ‘cognitive dysfunction’ is that it’s a problem of difficulty finding words and retrieving information,” Brey explains. “My patients say it feels like they have brain fog.”

CNS lupus involvement

CNS involvement

In addition to the milder brain fog, some lupus patients also have Central Nervous System (CNS) involvement of their lupus.  This is a more serious problem than brain fog, and if uncontrolled can result in damage to brain tissue and even in extreme cases death.  This, like any other attack organ damaging attack of lupus is important to treat quickly and appropriately to prevent possible damage to brain tissue or other disabling complications.

CNS symptoms

My own lupus challenges include CNS involvement.  CNS lupus is the major reason that my lupus medications eventually included stronger drugs such as prednisone, kenalog injections, methotrexate, azathiaprine, rituximab infusions and now belimumab infusions.  Each patient with this problem is carefully followed by their rheumatologist, and may also be treated for their CNS symptoms through referral to a neurologist.  The most severe cases of CNS involvement can also cause seizures, but I have never had this problem myself.

My CNS lupus symptoms usually indicating a flare include:

  • mental confusion
  • short-term memory problems
  • cognitive dysfunction and disruption
  • difficulty concentrating and solving problems
  • general sense of confusion, lack of direction
  • disorientation to space and getting lost trying to find familiar places
  • forgetting names of people I know very well
  • confusion about time, day, date and even month
  • problems with math calculation
  • difficulty with eye-hand coordination, vision and depth perception
  • slurred speech and difficulty articulating words while speaking
  • headaches
  • reversible depression

Most of my CNS lupus symptoms typically immediately responds to steroid treatments given by my doctor, either as an injection or a large burst in my daily prednisone dose, followed by a gradual tapering of the dose as the flare lets up.

Authoritative information about CNS lupus and other types of nervous system involvement of Lupus is found at the Lupus Foundation of America’s website.  Their article on the Nervous System  discusses various types of nervous system involvement, and highlights many important issues and symptoms associated with these possible complications of lupus.

Nerve cell

Peripheral and autonomic nervous system and lupus

Peripheral neuropathy with lupus can be caused by inflammation, compression, damage or swelling in tissue around nerves, resulting in vision problems, facial pain, ringing ears, dizziness, drooping eyelids, or carpel tunnel syndrome.  My lupus experiences include peripheral neuropathies in my legs, cranial nerves and even once neuropathy was diagnosed as the cause of severe pain in a tooth that almost made me get an unnecessary root canal.  Thanks to an astute endodontist who knew about lupus, he accurately diagnosed my problem and we treated my lupus, instead of pulling a tooth!  Neuropathy can cause burning, pain, numbness and temporary disruption of normal nerve functions.

Neuropathy nerve damage

Lupus can cause over activity in the autonomic nervous system (ANS,) disrupt normal regulation of automatic body functions and cause numbness, burning, tingling, mental confusion, headaches, and digestive problems.

Raynaud’s phenomenon happens when ANS lupus involvement causes inflammation in nerves or blood vessels, making vessels spasm and restricting blood flow, especially in repsonse to cold. Finger tips or toes turn red, white, or blue and may also hurt.

Headaches in lupus patients can be due to migraines, or can be caused by vasculitis from active lupus causing blood vessel inflammation. Lupus headaches that don’t respond to over-the-counter pain medications should be discussed with the patient’s doctor.

Lupus and Benlysta after 7 months – Infusion #9

Finally, Benlysta infusion #9

Last week, it was a relief to finally receive a twice postponed Benlysta infusion for my lupus.  Also, today marks one week into the  April Health Writer’s 30 day challenge, and over 7 months (32 weeks) into my Benlysta treatments.  Happy day #225 with Benlysta.  Today is an important milestone, simply because I am declaring it one for both reasons!

Asthma relief inhaler Xopenex

After spending most of March fighting a nasty long case of bronchitis, I am just now finishing the last doses of my fourth antibiotic prescription.   Cipro, Zithromax, Cipro a second time (because it kills mycoplasma my doctor found after Rx #2,) and finally Bactrim.  Along the way from sick to well, there were three courses of steroids, four doctor appointments and one telephone consult.  The recurring fevers are gone, my lungs are mostly clear, the coughing and choking have stopped, I can talk and sing again, and oh, yes, I can even breathe most of the time.  Except for the moments when my slightly flared asthma kicks up, my respiratory system is back in working order and I am back to work full-time.  What a relief!

My husband has explained lately how much his joints have hurt after working long hours and accomplishing some major projects at work.  As we talk, I have realized that my joints have been hardly hurting at all.  Usually, because of my lupus, I am the one who wakes up with joint arthritis pain, and he is the comforter.  Lately, our roles are decidedly reversed.  Each time I quietly realize that I don’t hurt, I have a wonderful opportunity to be thankful for the improvement.

Declaring victory!

What lies ahead with my lupus and Benlysta?  I’m not really sure, but I know my rheumatologist is not going to be pleased hearing about my 4th infection in the last 4 months of infusions.  He commented with concern about it the last time I saw him, when I had only had 3 and he is sure to be concerned.  I am feeling pretty good now, and doing little complaining.  My energy levels are up, my lupus peripheral neuropathy symptoms are nearly dormant, my joint pain is down, and my CNS lupus symptoms seem to be in check.  I am waking up in the morning, sometimes before the crack of dawn, and feeling pretty decent.  I will take decent and declare it to be a minor victory.  Decent is acceptable to me any day!

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