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.

Living with Lupus: Fact #20 – A healthy diet is a healthy Lupus diet

Living with Lupus:  People with lupus (and everyone else, too) should eat a nutritious, well-balanced, and varied diet that has plenty of fruits and vegetables, whole grains, and moderate amounts of fish and lean meats.  When a patient is diagnosed with lupus, there is no specific recommended diet just for lupus.

A good diet for lupus is a good diet

The only dietary changes that will help a lupus patient get healthier are the same dietary changes that will help any person get healthier.

There is no secret diet cure or magic menu that will whisk away lupus symptoms.  The best diet is one that responds to the stresses that lupus places on a patient’s body, such as steroid use, inflammation, immune modifying drugs.   Good diet that won’t stress vital organs with extremes of sugar, salt, fat or empty calories is a good idea for everyone.

Shopping for a health diet

Over the years, I have seen my diet preferences change, and I have noted the difference that a good nutrient rich diet makes in my overall health and well-being.  Too many cakes, cookies, colas and candy bars (the bad “c” quartet) fail to deliver the promise that the TV commercials suggest.  I tend now to drift away from the goodies, and cruise the outer perimeter of the grocery store where the whole foods are hiding out.  I have also noticed that a lap around the outside aisle of the grocery store is faster than weaving back and forth through all the parallel aisles in the middle.

The produce counter

Here’s my average lap on the perimeter grocery shopping route:

• Start off on the first leg of the loop in the produce aisle and pick up lettuce, celery, radishes, cucumbers, tomatoes, avocados, apples, oranges, watermelon, grapes, strawberries, blackberries and blueberries, depending on what is in season.
• Finishing up the produce area I grab some broccoli slaw and shredded cabbage for coleslaw, some onions and a bag of potatoes.
• Next we cruise in a straight line through bakery, slowing briefly to grab some whole grain bread.
• Picking up speed as I round the first turn, I zoom past the cakes, cookies, pies and donuts and head quickly for the meat counter.
• Slowing slightly to watch for good bargains, I pick up lean ground beef, a roast, lean pork chops, and frozen chicken breasts and frozen fish fillets

The half-way point

I have reached the half-way mark!

• Next, a short buzz through the deli section produces some lean sliced ham, sliced cheese and grated cheese.
• Swinging by the dairy case olive oil margarine, low-fat milk, light yogurt, cottage cheese, eggs, light sour cream  and (my one indulgence) York Peppermint Patty coffee creamer all jump into my cart as I pass by.
• Leaving my cart briefly at the end of an aisle, I zip quickly into the freezer section for frozen Italian green beans, broccoli and mixed veggies, juggling the frozen armful back to my cart.
• Two more speedy isle excursions yield my favorite dark roast coffee, and replacements of mustard, ketchup, relish, dill pickles, olive oil or olive oil mayo I might be out of.

Last, the home stretch!

• A few paper, cleaning and toiletry items complete the lap as I approach the check out counters.
• At this point I put on blinders as I have to pass through the debris of candy and other goodies on display between me and the cash registers.
•  Just before checking out, I stop briefly and pick up a couple of 2 liters of Diet Rite Cola (okay, this is my second indulgence.)

To make this cart full of food become some good meals actually requires spending a few minutes in the kitchen each day.

Few foods to avoid and a few indulgences to include…

A few indulgences, with moderation!

The only specific food that I know about that lupus patients should steer clear of is alfalfa sprouts, because of some known flare triggering properties.  There are some foods that might be contraindicated because of certain lupus medications, but these should show up when the pharmacist checks for drug interactions.  I have to stay away from grapefruit because it interacts with one of my lupus medications.

My husband and I have found that a flavorful variety of fresh produce and whole foods is very appetizing and satisfying, helps us manage our weight, and makes us feel overall healthier and more energetic.

There still need to be a couple of indulgences, like my coffee with creamer or favorite diet soda.  “Moderation is all things” is an age old wise suggestion that really applies to healthy eating for anyone, or any lupus patient.

After all, a good diet, is a good lupus diet!

Coping with Lupus: Fact #19 – Common lupus blood disorders – anemia, thrombocytopenia and more

Coping with Lupus: Blood disorders such as anemia (too few red blood cells) are common in lupus, and can greatly affect the health of lupus patients.  A few blood related (hematological) conditions really matter in lupus.  Blood related issues are usually treated by hematologists, the specialists who know the most about helping patients with blood disorders.  A rheumatologist might ask a hematologist to help treat their lupus patient that has a blood disorder.

Anemia in childhood and pregnancy

Several times as a child and during both of my pregnancies, I had serious anemia.  My main symptom each time was overwhelming fatigue and exhaustion.  During my pregnancies the anemia made my doctors very concerned about my unborn babies’ health, too.   Since they hadn’t yet found my lupus, my doctors probably didn’t consider if my anemia was connected to lupus, but they gave me special prescription iron supplements to help me.

During my pregnancies, my doctor even prescribed eating liver for dinner once a week! I had always hated liver (yuck!) but I loved my babies-to-be, so I set out to force myself to follow the doctor’s orders.  My husband loves a good dinner of liver and onions, so he loved the change to our menu!  Eventually, I even started liking liver!

Lab tests for Lupus Blood Disorders

Lab Tests for Lupus Blood Disorders

Like most other lupus patients, my rheumatologist orders regular blood tests to watch for anemia and other blood problems, since lupus constantly changes how it affects the different systems of my body.  My doctor sends me for new blood tests every three months.  These regular blood tests are a very important part of my lupus treatment plan. Blood tests will alert my doctors to lupus related blood conditions such as anemia, thrombocytopenia, leukopenia, neutropenia and thrombosis.

Here is some brief information that I have put together from reading about lupus-related blood disorders at great sources such as the Lupus Foundation of America, in their article about lupus and Blood Disorders, wonderful sites like the National Institutes of Health articles like their Handout on Health: Systemic Lupus Erythematosus, and many other reliable resources.

Too few red blood cells

Anemia

Red blood cells live about four months and are made all the time by the bone marrow.  About half of all lupus patients have low hemoglobin (too few red blood cells.)  Anemia is the most often diagnosed blood disorder in lupus patients, and fatigue is usually the first symptom.

• Most anemia is due to reduced red cell production.
• Sometimes, anemia is due to early red cell destruction (hemolytic anemia.)

Too few platelets

Thrombocytopenia

Blood platelets are very tiny blood cells made by special huge “factory” cells in your bone marrow and blood called megakaryocytes (large+nut+cell.)  The platelets are sent out into bone marrow and blood as many break away like “nuts falling from a tree.”  Platelets are what help your blood stick together to stop bleeding in a wound, so, these little tiny little cells are very important!

Thrombocytopenia happens when there’s too few platelets.  Without enough platelets, a patient bruises easily, can get small bleeding spots in their skin, and can easily get frequent nose bleeds or bleeding in other places.  Lupus thrombocytopenia is caused by lupus antibodies, but may not need special treatments, besides controlling the lupus that causes it.

Medicines like prednisone, azathioprine, rituximab or intravenous gamma-globulin sometimes help control thrombocytopenia.  In some of the worst cases of thrombocytopenia, a patient’s spleen might even be taken out so it won’t filter the platelets out of a patient’s blood.

Too few white blood cells

Leukopenia and Neutropenia

Doctors watch their lupus patients’ lab results to see if leukopenia or neutropenia show up, when their numbers of white blood cells that help fight infections drop too low. They protect the body from viruses, bacteria, toxic substances, parasites, and tumor cells.  Having a low white blood cell count is leukopenia, and having a low count of a certain type of white blood cells called granulocytes is neutropenia. Sometimes a patient doesn’t make enough white blood cells, and sometimes they are destroyed by lupus or lupus medicines.

Blood is too sticky

Thrombosis

Blood is usually a liquid, but when we get hurt or wounded, our blood gets thick and clots in wounds to plug them up. Without our blood clotting (coagulating or hemostasis) we might bleed without ever stopping, and that could have some pretty horrible results!

Some patient’s blood clots too easily, where it shouldn’t, and can cause a dangerous situation called thrombosis. A clot (a thrombus) might block the flow of blood vessels, or break apart (an embolus) and travel through blood vessels to block blood flow in a totally different place.  Lupus patients with antiphospholipid antibodies have a greater risk of blood clots.  Anti-clotting medicine like warfarin (Coumadin) is sometimes given to “thin” a lupus patient’s blood who has thrombosis.  Taking aspirin may not help thrombosis, and might even be dangerous, especially without a doctor’s advice and supervision.

Symptoms of thrombosis might show up in as swelling calves and ankles, and when a finger is poked into the swelling it sometimes leaves a dent, (called pitting edema or swelling.)  When that happens, getting some immediate medical attention is a great idea!  The swelling might be a sign of a possible blot clot and prompt treatment might even save a patient’s life.  Only a doctor can figure out if swelling is caused by a blood clot.  Blood clots in a pregnant patient can even hurt their unborn baby.

My personal connection to a serious blood disorder

Travel increases risk of thrombosis

Thrombosis has a special concern in our family that has nothing to do with my lupus.  We learned a few years ago that my husband was born with a hereditary blood disorder that causes thrombosis, called a Leiden V Gene Mutation.  He experienced a serious deep vein thrombosis (DVT) in the whole length of the largest vein in his left leg.  He was hospitalized for several days observation and treatment with low molecular weight heparin (Lovonox) injections.  The concern was a potentially fatal complication that might happen if an embolus might break  away from the clot and travel to his lung.

As a result, we learned more about thrombosis, and he will take coumadin every day for the rest of his life to try to prevent the return of any more clots.  During long road or airline trips, he also has to take the Lovonox injections again and stop to get up and walk around for a few minutes every hour or two.  He also uses a testing machine every 2 weeks to test his PT/INR reading, and his doctor gets sent the results electronically from the machine via the company that operates the home lab service.

The oncologist who treated his blood disorder explained that research showed risks for thrombosis are greatest for anyone after long periods of physical inactivity and sitting such as long airline flights.  Yet one more reason to get up and move once and awhile!

Coping with Lupus: Fact #18 – Lupus increases osteoporosis risk – Put on Purple – Today!

Lupus and Bone Loss

Coping with Lupus: Women with lupus are at increased risk for loss of bone mass (osteoporosis) and are nearly five times more likely to experience a fracture.  Everyone with lupus should become knowledgeable about osteoporosis.  We all need either a treatment plan that reduces bone loss risk, or to treat and possibly reverse  bone loss.  For years, my bone density remained above the normal range, but after many years of steroid treatments for lupus, my bones were finally losing density and needed more attention.

Got milk?

My diet has always included large amounts of natural calcium, including milk, yogurt, cottage cheese, cheese and many fresh vegetables that provide rich sources of calcium.  Even though my bone density has been good over the years, usually 100% to 110% of the normal range, my rheumatologist has insisted that I include bone-supporting supplements of calcium and vitamin D in my daily routine.  He followed me with periodic bone density tests as medically responsible due to my continued dependence upon daily low dose steroids as part of my overall lupus treatment plan.

Actonel

Declining bone density and osteoporosis medication – a rare bad reaction!

However, at my first signs of declining bone density exam results, dropping several percent below normal, my rheumatologist prescribed Actonel, in a once-a-month dose osteoporosis medication.  Unfortunately, I had an extremely bad experience with this drug!  After taking my first dose, within just a few hours I felt the onset of the most severe deep skeletal bone pain I have ever felt in my life (or even imagined in my worst nightmares.)  Every single bone in my body hurt, and even the entire length of every rib, by skull and my jaw hurt intensely.  There was no escaping or distracting myself from the overwhelming reaction I experienced to the osteoporosis drug.

The debilitating and excruciating bone pain lasted for several days, and I lost a whole week of work remaining in bed on pain medications, just to cope with the drug reaction to Actonel.  The patient drug information sheet includes a warning about the possible rare side effect I experienced.  My doctor immediately took me off the offending osteoporosis drug.  Even if my doctor had not advised me to stop taking Actonel, I would have made that decision all on my own!  That was clearly a “no brainer!”

Too “chicken” to try again!

Negotiated non-compliance with an alternative

A couple of months later, my doctor prescribed Boniva, a similar drug.  After filling the prescription, I just refused to take it.  I just didn’t have the heart to try again.  I looked at the unopened package over and over, picked it up and read the same warnings on the package that were on the Actonel package, and even once broke the blister and held the pill trying to convince myself to take it.  I just simply “chickened out” and tucked the pill back into the blister pack and placed it back on my medicine shelf. (It sat there for two more years, not taken.)

Stubborn, gutless wonder…

After my first experience with this class of drug, I could not muster up the courage to try Boniva.  Despite my rheumatologist’s protests, I refused to take any another similar drug.  This was one of my most notable times of being a completely non-compliant patient, when I was absolutely unwilling to try something my doctor prescribed.

So, instead I negotiated insistently with my doctor.   I proposed that, if after six months of increased weight-bearing exercise and increased calcium and vitamin D supplements my next bone density exam did not return to the normal range, then, and only then I would give another osteoporosis drug a try.  He agreed.  If my next bone density exam improved to a normal range, he would let me forgo any new osteoporosis drugs.

Calcium with Vitamin D

Weight-bearing Exercise and Supplements

My increased efforts to build my bone strength were ultimately successful, and so far, I have succeeded in keeping my bone density at normal or near normal levels without adding osteoporosis medications.  A couple of years after the Actonel experience, I finally threw the unused Boniva prescription away.  Exercise, a calcium rich diet and calcium supplements that include vitamin D are still critical.  I hope that this approach will always be adequate, but if not, I must keep my promise to my rheumatologist, and will be willing try another drug to preserve my bone health and reduce fracture risks.

For many lupus patients, diet and supplements are inadequate to prevent declining bone density, but thankfully, the extremely negative reaction to osteoporosis medications that I experienced is extremely rare, and is not the norm.  Most patients should definitely try taking the drugs their doctors recommend to treat their osteoporosis or reduce risk of potential bone loss.

Learn about Bone Loss

A good place to start for every lupus patient is to read more about lupus and bone loss.  Here are some very reliable sources of patient information about osteoporosis and Lupus:

What People With Lupus Need to Know About Osteoporosis, by NIH

Bye-Bye, Bone Loss, by Amy Paturel, M.S., M.P.H.

Osteoporosis, by LFA

Lupus and Osteoporosis, by LFA

Don’t Forget to Put on Purple Today!!

Don’t Forget to Put on Purple Today Before you Leave the House!

The next thing to do is to talk to your rheumatologist about your bone loss risks.  You may have normal bone density and might be dodging the bone loss bullet, but perhaps  you are experiencing progressive bone loss.  You and your doctor should discuss your status and the health of your bones, and decide if a treatment plan for osteoporosis is right for you.  You rheumatologist will probably recommend a bone density scan.  The scan is painless and takes just a few minutes in the doctor’s office or radiology lab.

Remember:  Whatever else you do to protect your bones, just don’t forget to do regular weight-bearing exercise!

Coping with Lupus: Fact #17 – Drug-induced lupus is reversible!

Coping with Lupus: Drug-induced lupus is a lupus-like disease caused by taking specific prescription drugs.

Drug-induced lupus is reversible!

The Lupus Foundation of America (LFA) reports that “drug-induced lupus accounts for about 10 percent of all lupus cases and is caused by high doses of certain medications. The symptoms of drug-induced lupus are similar to systemic lupus; however, symptoms usually subside when the medications are discontinued.”

The great news is that drug-induced lupus is reversible!

These three drugs cause most cases of drug-induced lupus:

• procainamide (Pronestyl)
• hydralazine (Apresoline)
• quinidine (Quinaglute)

For all the other 35 drugs known to cause drug-induced lupus, the risk is either low, very low or extremely rare. Some of these drugs have only been documented as causing one or two cases of drug-induced lupus.

Drugs Reported to Induce Lupus-Like Disease

Agent	Risk		Agent	Risk
Antiarrhythmics			Antithyroidals
Procainamide (Pronestyl)	high		Propylthiouracil (Propyl-thyracil)	low
Quinidine (Quinaglute)	moderate
Disopyramide (Norpace)	very low
Propafenone (Rythmol)	very low		Antibiotics
Antihypertensives			Isoniazid (INH)	low
Hydralazine (Apresoline)	high		Nitrofurantoin (Macrodantin)	very low
Methyldopa (Aldomet)	low		Minocycline (Minocin)	low
Captopril (Capoten)	low
Acebutolol (Sectral)	low
Enalapril (Vasotec)	very low		Anti-Inflammatories
Clonidine (Catapres)	very low		D-Penicillamine (Cuprimine)	low
Atenolol (Tenormin)	very low		Sulfasalazine (Azulfidine)	low
Labetalol (Normodyne, Trandate)	very low		Phenylbutazone (Butazolidin)	very low
Pindolol (Visken)	very low
Minoxidil (Loniten)	very low		Diuretics
Prazosin (Minipress)	very low		Chlorthalidone (Hygroton)	very low
			Hydrochlorothiazide (Diuchlor h)	very low
Antipsychotics			Miscellaneous
Chlorpromazine (Thorazine)	low		Lovastatin (Mevacor)	very low
Perphenazine (Trilafon)	very low		Levodopa (Dopar)	very low
Phenelzine (Nardil)	very low		Aminoglutethimide (Cytadren)	very low
Chlorprothixene (Taractan)	very low		Alpha-interferon (Wellferon)	very low
Lithium carbonate (Eskalith)	very low		Timolol eye drops (Timoptic)	very low
Anticonvulsants
Phenytoin (Dilantin)	very low
Carbamazepine (Tegretol)	low
Trimethadione (Tridone)	very low
Primidone (Mysoline)	very low
Ethosuximide (Zarontin)	very low

Information in the above chart was supplied by the LFA in their article discussing the history, treatment and medical facts about Drug-Induced Lupus.

May 18th – Put on Purple!

Don’t forget to wear purple tomorrow – it will be POP for Lupus Day… Put on Purple!

Coping with Lupus: Fact #16 – Discoid is the most common lupus

Coping with Lupus: Discoid lupus (the most common form of skin lupus) accounts for approximately 10 percent of all cases of lupus and occurs in 20 percent of those with systemic lupus.  My discoid lupus was most pronounced before I began taking Plaquenil, and after this first baseline drug treatment started, my rashes cleared up on my face, eyelids, hairline, scalp, chest, arms and thighs.  Now, occasionally a few discoid rashes between my fingers, on my forehead or cheek, or my hairline.

Cutaneous lupus

Forms of cutaneous lupus

The Lupus Foundation of America describes forms of cutaneous lupus in an article on photo-sensitivity and lupus:

1) Acute cutaneous lupus erythematosus (ACLE):

• This is also known as the “butterfly rash” of lupus and occurs over the cheeks and nose.
• It often comes on after sun exposure, and is associated with lupus flares.
• ACLE usually heals within weeks without scarring.

2) Discoid lupus erythematosus (DLE):

• The term “discoid” refers to the disk-shaped lesions of the rash.
• The rash occurs mainly on sun-exposed sites.
• The lesions develop slowly and heal over several months, and may cause scarring.

3) Subacute lupus erythematosus (SCLE):

• SCLE is highly photosensitive.
• It usually shows up as many red, circular shapes on the chest, back and arms.
• It is often a little scaly, resembling psoriasis.
• This form of lupus is particularly associated with antibodies in the blood to the Ro protein (mentioned above).
• SCLE tends to heal over weeks or months and is usually non-scarring.
• It frequently comes back after more sun exposure.

Both SCLE and DLE may occur on their own without the presence of systemic lupus.  Although systemic lupus occasionally develops in people who first have DLE or SCLE, it tends to be a milder illness than the usual form of SLE.

Topical steroids

Slather on the steroids!

A Lupus Foundation of America research report about a new drug, Efalizumab, in the Treatment of Discoid Lupus Erythematosus discusses the following about discoid lupus.

Discoid lupus is a form of lupus that affects the skin (cutaneous lupus). In most cases the discoid lupus rash appears on the face, neck, or scalp, though it can also show up on other areas of the skin. Severe discoid lupus may result in scarring. The treatments that are used most often for severe discoid lupus are strong immunosuppressants that may have significant side effects, especially when used over long periods of time.

A search on www.webmd.com for drugs used to treat discoid lupus, returned a list that included oral Plaquenil/hydroxychloroquine (brand name/generic,) Thalomid, and Thalidomide, the injectable drugs Kenalog, triamcinolone acetonide and Aristospan Intralesional, and a very long list of 106 different topical steroid medications for application to the lupus discoid skin lesions.

Drugs for Cutaneous Lupus

Thalidomide is a drug that has a strong negative stigma about its known relationship to birth defects in the babies of women who used it during pregnancy for their morning sickness. It has been found to be effective in treating some cases of lupus.

Coping with Lupus: Lupus Fact #15 – Four Types of Lupus

Coping with Lupus:  There are four distinct forms of lupus.  Systemic lupus is the most common type of lupus.  The other three forms of lupus are cutaneous, drug-induced and neonatal.  Drug-induced lupus and neonatal are not a sustained lupus, but systemic and cutaneous lupus are auto-immune conditions that tend to stay with a patient throughout their life, since there is no known cure yet for the latter two forms of lupus.

1. Systemic lupus – organ and non-organ threatening
2. Cutaneous lupus – non-systemic discoid lupus
3. Drug-induced lupus – caused by certain medications known to produce temporary lupus
4. Neonatal lupus – affecting newborns born to mothers with lupus

Distribution of Forms of Lupus

The percentages for the different types of lupus came from statistics provided by the Lupus Foundation of America in an article on lupus demographics.  I used the data LFA supplied to develop the following pie chart, to show the distribution of lupus types.  Two subgroups of systemic lupus are shown for the 50% of systemic lupus patients with major organ involvement in their lupus, and the remaining 50% who have milder forms of the disease.

Some patients with non-systemic discoid/cutaneous lupus see their lupus develop into systemic lupus.  This only happens in a percentage of patients who start out with cutaneous lupus.

The NAIMS online publication, Lupus: A Patient Care Guide for Nurses and Other Health Professionals, outlines how systemic lupus can affect any organ system of the body.

General Manifestations

• Fatigue
• Fever
• Psychological effects
• Emotional effects

Specific Manifestations

• Dermatological: butterfly rash, photosensitivity, Discoid LE, subcutaneous LE, mucosal ulcers, alopecia, bruising
• Musculoskeletal: arthralgias, arthritis, other joint complications
• Hematological: anemia, decreased white blood cell (WBC) count, thrombocytopenia, lupus anticoagulants, false-positive venereal disease research laboratory test (VDRL), elevated erythrocyte sedimentation rate (ESR), lymphopenia
• Cardiopulmonary: pericarditis, myocarditis, myocardial infarction, vasculitis, pleurisy, valvular heart disease
• Renal: asymptomatic microscopic renal involvement, renal failure, fluid and electrolyte imbalance, edema
• Central Nervous System (CNS): cranial neuropathies, cognitive impairment, mental changes, seizures, stroke, peripheral neuropathy, meningitis, coma, psychosis
• Gastrointestinal (GI): anorexia, ascites, pancreatitis, mesenteric or intestinal vasculitis
• Ophthalmologic: cytoid bodies, dry eyes

Other Key Issues

• Pregnancy: lupus flare, miscarriage or stillbirth, pregnancy-induced hypertension, neonatal lupus
• Infection: increased risk of respiratory tract, urinary tract, and skin infections; opportunistic infections
• Nutrition: weight changes, poor diet, appetite loss

Symptoms change with some constants

Lupus potentially can affect every patient differently, and from time to time differently in each patient.  My systemic lupus has shown the following manifestations from the above lists: fatigue, fever, emotional and psychological effects, butterfly rash, photosensitivity, discoid LE, mucosal ulcers, alopecia, bruising, arthralgia, arthritis, anemia, pleurisy, edema, cranial neuropathy, cognitive impairment, peripheral neuropathy, and dry eyes.  Few of these manifestations have been present at the same time.  The only constants are fatigue, photosensitivity, mucosal ulcers, arthritis, cognitive impairment, peripheral neuropathy and dry eyes.  All other symptoms come and go.

Coping with Lupus: Fact #14 – Balanced Exercise and Rest Maintains Strength

Coping with Lupus: People with lupus are usually encouraged to engage in appropriate daily exercise to keep up muscle and bone strength.  Exercise is not intuitive for those with auto-immune health challenges like lupus, rheumatoid arthritis or fibromyalgia.  Waking up each morning with joint stiffness and pain, the first thought on my mind is definitely NOT exercise!

My natural inclination is a long hot tub bath or jacuzzi soak to wrap warm comfort around  aching joints, or perhaps sipping coffee in bed while waiting for analgesic and morning prednisone medications to “kick in.”

Are you kidding?

Exercise?  Are you kidding?

Yes, our doctors all tell us (and everyone without auto-immune disease, too) to exercise!  Why is the idea so repugnant to us?  Simply because we hurt!  The idea of moving and getting up to shake up painful joints is simply counter-intuitive.  We can’t imagine that when moving hurts, doing more of it will make us hurt less.  But, the truth is that moving gently and getting some mild exercise WILL help manage and relieve pain.  Trust me, believe your doctor, and if you are not getting any or enough gentle exercise, I urge you to consider starting.

With a membership in a health club, I could swim in an indoor pool — it was invigorating!  Some days, I work through some simple yoga exercises that help stimulate my deep breathing and encourage circulation in joints, tendons and cartilage using gentle controlled movement and balance — it is refreshing!  Other days, I get on my bike, with its rear wheel nestled in its indoor fluid trainer stand (a normal exercise bicycle works well, too) and spin for as few as ten or as many as 30 minutes – it is strength-building!

What about when I hurt?

What about the bad days?

On days I hurt the worst, I do just a few minutes of the simplest yoga moves or spin on the bike for no more than 10 minutes.  The goal is just to stir up a little circulation and get my joints in motion, and to stir up a little adrenaline to get me feeling like moving.  Almost always, the gentle movement results in a lowering of my perceived level of pain, and puts my body into a more energetic state.

With a little more adrenaline flowing, and a natural rise in body endorphin levels, my ability to handle the pain increases, and my perception of the pain decreases.  It’s just the biology of movement, nothing more.  This is the effect of exercise that is so counter-intuitive to the pain.  You don’t naturally think it will happen when you feel like stilling still, because every motion of your joints hurts.

Balance exercise and rest!

Balancing exercise and rest – remember moderation!

Take care to balance exercise with rest or when you hurt.  Our doctors rightly tell us not to overdo, or to move in ways that cause more pain.  The right amount of exercise, done with moderation and restraint, should help the pain decrease almost immediately when you start moving.  Increasing pain means it is time to stop the exercise.  Caution to take things slowly is always first when thinking about exercise.

It may take a while to build up to enough exercise to get an aerobic effect.  For me, the pain drastically reduces when I reach the aerobic point in my routine.  My breathing deepens, my strength suddenly increases and my pain reduces.  I first learned to find the aerobic point when I went through physical therapy for a damaged shoulder and rotator cuff.

Approaching and crossing aerobic point

Magic of crossing the aerobic point

The therapists used computerized equipment that measured the movements and changes in my strength levels during the routines.  They would point out the moment when the computer registered the rise in my strength, and I could associate it as a point when I experienced a drop in pain.  The bursts of strength would occur several times during the therapy routines, and each time I would feel a little stronger and move more easily.

I sense a response similar to the physical therapy with gentle sustained exercise.  My first sense of the change is usually about 12 to 17 minutes into my cycling.  After that, I feel like going a little faster, and immediately feel a little more energetic.  I usually try to cycle long enough to reach that first point, and push beyond it a little.

Just do it!

Building up, slowly

If I am having a string of days or weeks of quieter lupus, I can build up to about 30 minutes of exercise, never adding more than a minute each day.  Some days, if I am hurting a lot, I slowly cycle for only about 5 – 10 minutes, never pushing speed to a point where pain rises.  Even moving very slowly helps a little!  I cannot remember a time when I didn’t feel at least slightly better after exercise than I did before it.

Try it.  Really!

Coping with Lupus: Fact #13 – Lupus causes fatique, even on Mother’s Day!

Coping with Lupus: As many as 80 percent of people with lupus experience fatigue. For some, fatigue can be debilitating, even to the point of forcing them to stop working. All week long as I have been preparing and planning for a Mother’s Day gathering at my home, I have battled extreme fatigue.  As the week progressed, I realized that this was my first sign of a lupus flare, and have been challenged to accomplish the things I needed to do to prepare for hosting today’s festivities.  Today, I started a 20 day taper of prednisone to treat the flare of my symptoms.

My mom, a long, long time ago…

As my husband and I stood yesterday looking at Mother’s Day cards for his mother, I was suddenly overcome by some unexpected tears while holding a card that would have been just perfect for my mother.  My heart flooded with emotion and love for her, with the feeling of great loss that still sneaks up on me, even fourteen years after her death.  Today, and in all our focus this month on lupus awareness, we cannot skip over Mother’s Day without acknowledging lupus patients who are mothers.

The cards all had butterflies…

Later on, as I was dusting the pictures in my house in preparation for today’s family gathering, and I was caught again by tears.  I was dusting the framed print of a poem I had written for my mother 20 years ago, in May of 1992.  Next to it is my cross stitch picture of a grandmother and granddaughter sitting together working on a quilt, with baskets of yarn and kittens at their feet.  I gave the framed embroidery and poem to my mother for Mother’s Day 20 years ago, and after her passing, my father gave them back to me.

The poem and picture tell a little about my grandmother, who had rheumatoid arthritis, diabetes and blindness.  I must have inherited a little of my auto-immune profile from her!  My mother helped me know the real heart of my grandmother, even though my time with grandma was extremely short.  Here is my poem, written in the spring of 1992 as I worked on the cross stitch picture for her gift.

Patchwork Portrait

My mother’s a patchwork stitched over the years,
Connecting my grandma to me.
A tangent of love joining both of our lives
Who for distance and years could not see.

Mom quilted her likeness one piece at a time,
Sewn so gently and lovingly in.
Her portrait is formed in the depths of my mind,
Precious handwork, her image within.

This daughter remembers a few cherished thoughts
Of the one who was grandma to me,
Warm deep blue eyes, softer tender heart,
Tales of hobos to dinner and tea.

I try to pass on this fine quilter’s art,
To my girl as mom did to me,
Sewing choice swatches of grandma to child,
So a wee bit of grandma she’ll be.

She knows certain things that her grandmother loves,
Learned through stories I’ve pointedly told.
She cherishes knowing her grandmother’s ways,
How like grandma she is to behold!

I’m hoping that someday in God’s grand design,
A mother and grandma she’ll be,
And want to pass on some old quilter’s designs
To the little ones perched on her knee.

By Lupus Adventurer
Copyright May 1992

Patchwork Portrait

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.