Lupus Diet
Lupus Diet
Lupus Diet
The chronic autoimmune disease lupus is very mysterious. It can impact anyone at any time (though it is
most common in women of childbearing age). Its cause is unknown. And while lupus symptoms can vary in
where they occur in...
The chronic autoimmune disease lupus is very mysterious. It can impact anyone at any time (though it is
most common in women of childbearing age). Its cause is unknown. And while lupus symptoms can vary
in where they occur in the body and how severe they are, they can come and go without warning.
If you’re one of the 5 million people worldwide living with lupus, you’ve probably worked with your doctor to
determine what medications and lifestyle changes can help you keep symptoms at bay for as long as
possible and send flares into remission. Your diet for lupus, while not a cure, can contribute to these
goals.
Celecoxib (Celebrex)
Diflunisal (Dolobid)
Etodolac (Lodine)
Ibuprofen (Advil, Motrin, Rufen)
Indomethacin (Indocin)
Meloxicam (Mobic)
Midrin
Nabumetrone (Relafin)
Naproxen (Naprosyn, Alleve)
Oxaprozin (Daypro, Duraprox)
Piroxicam (Feldene)
Salsalate (Disalcid)
Sulindac (Clinoril)
Tolmetin (Tolectin)
Trilisate
Ketoprofen (Orudis, Oruvail)
Most NSAIDs block both Cox-1 and Cox-2 enzymes. Since the Cox-1 enzyme helps some of your organ systems to
function normally, you may experience some side effects when taking NSAIDs, such as upset stomach. [A full list of
possible side effects can be found below.] However, some newer NSAIDs, such as celecoxib (Celebrex), block only
the Cox-2 enzyme, which may help your body to avoid some of the more traditional side effects. A Cox-2 inhibitor
is sometimes called a “selective” inhibitor. Your doctor will help you to decide which type of NSAID works best to
treat your lupus symptoms, while minimizing the possible side effects.
Upset Stomach
Headache
Easy bruising
High blood pressure
Fluid retention
Dyspepsia (gnawing or burning pain in the pit of your stomach, sometimes with bloating)
Gastritis (stomach inflammation) or gastric ulcers may occur, causing either hidden or apparent bleeding. This
blood loss may lead to anemia.
Increased risk of heart attack or stroke.
Effects on blood platelets, cells that help your blood to clot normally – Most NSAIDs have some effect on
blood platelets. When platelet function is reduced, it takes longer for your blood to clot. While this effect can
be bad for some, it can be beneficial for others. In fact, aspirin is often prescribed to reduce the risk of blood
clots in people who have antiphospholipid antibodies. However, it is important that you speak to your doctor
before taking any NSAIDs if you are on low-dose aspirin therapy, since certain NSAIDs such as ibuprofen (Advil,
Motrin, Rufen) can interfere with the effectiveness of this treatment. Selective inhibitors (Celebrex) do not affect
platelets.
If you already have blood pressure or kidney problems, NSAIDs may worsen kidney function. Fluid retention or
further elevation in blood pressure may occur. Reduced kidney function can occur with either Cox-1 or Cox-2
inhibitors. If you have lupus nephritis, you and your doctor should closely supervise your use of NSAIDs to
reduce the potential for further harm to your kidneys.
Occasionally lupus patients may experience elevations in their liver enzyme blood tests, suggesting a mild liver
inflammation (hepatitis). Usually this does not mean that the medication must be stopped, but liver tests
should be performed on a regular basis.
Worsening of symptoms in people with asthma or inflammatory bowel disease.
Severe headache with neck stiffness may occur exclusively in people with lupus, usually only with ibuprofen.
Skin rashes can occur, either in the form of hives or a light- or sun-sensitive rash. Sometimes these rashes can
mimic a flare of your lupus, so it is important you speak with your doctor if you experience this reaction. This
reaction is more common with piroxicam (Feldene)
Limit your alcohol intake while taking NSAID medications, since alcohol can irritate the stomach. People taking
NSAID medications should not smoke. In fact, individuals with lupus should not smoke at all due to their increased
risk of cardiovascular disease (the number one cause of death in lupus patients).
Lastly, it is important that you talk to your doctor about any other medications—prescription and over-the-counter
drugs, vitamins, and supplements—that you may be taking.
Have decreased kidney or liver function, or an uncontrolled or undiagnosed liver problem (for example,
hepatitis)
Have ever had an ulcer, gastritis, or bleeding from the intestinal tract
Take blood thinners (anticoagulants) like Coumadin, heparin, aspirin, or Plavix
Take steroids such as prednisone
Have a low platelet count
Have Crohn’s disease or ulcerative colitis
Have a history of stroke, heart attack, hypertension, or congestive heart failure
Have asthma or chronic lung disease
Are allergic to aspirin or any other NSAIDs
Have nasal polyps
Have ‘reflux disease,’ indigestion, or hiatal hernia
Are pregnant, may become pregnant, or are breast feeding
Drink more than 7 alcoholic drinks per week or more than 1 per day
Are over 65
Do not accept blood products due to religious or other reasons.
Get emergency help right away if you experience any of the following symptoms:
Chest pain
Shortness of breath
Weakness in one part of the body
Slurred speech.
What are anti-malarial drugs, and why are they used to treat lupus?
Hydroxychloroquine (Plaquenil), chloroquine (Aralen), and quinacrine (Atabrine) are medications that were
originally used to prevent or treat malaria. However, during World War II it was also found that these medications
were effective in treating the symptoms of lupus. Specifically, anti-malarial medications have shown to improve
muscle and joint pain, skin rashes, pericarditis (inflammation of the lining of the heart), pleuritis (inflammation of
the lining of the lung), and other lupus symptoms such as fatigue and fever. These medications may also prevent
lupus from spreading to certain organs, such as the kidney and central nervous system (your brain and spinal cord)
and may help to reduce flares by as much as 50%. Plaquenil and other anti-malarials are the key to controlling
lupus long term, and some lupus patients may be on Plaquenil for the rest of their lives. For this reason, you can
think of anti-malarials as a sort of “lupus life insurance.”
Studies have shown lupus patients on anti-malarials actually live longer than those who are not, and these
medications are usually prescribed when someone is first diagnosed with the disease. Anti-malarials are particularly
useful in treating discoid lupus, subacute cutaneous lupus, and mouth sores associated with lupus; they are also
effective in treating rheumatoid arthritis and Sjogren’s syndrome. However, anti-malarials are not a sufficient
treatment for more severe lupus symptoms such as kidney disease and nervous system or blood vessel
involvement. When lupus spreads to these organs, immunosuppressive medications are usually added to help
minimize irreversible injury.
If your ophthalmologist does find some Plaquenil deposits, s/he will simply request that you stop taking the
medication, and you may follow up with your rheumatologist about another advised method of treatment.
Unfortunately, retinal damage caused by Aralen may be irreversible, but this medication is rarely prescribed
anymore for lupus.
Do not smoke while taking anti-malarial medications, since smoking actually reduces the benefits of these drugs.
In fact, people with lupus should not smoke at all due to their increased risk of cardiovascular disease.
You should always take your anti-malarial medications with food to prevent stomach upset. If a stomachache
does occur, it is usually temporary. However, if you experience stomach upset while taking generic
hydroxychloroquine, ask your doctor about trying name-brand Plaquenil instead. While these medications contain
the same active ingredient, the preparation of generic hydroxychloroquine can sometimes cause stomach irritation.
This sort of upset usually does not occur with commercial Plaquenil. Your doctor can ensure that you receive this
version of the medication by writing “do not substitute” on your script.
Lastly, remember that even though you may feel the benefits of anti-malarial therapy after about a month of
treatment, it may take up to three months for the full benefits of the drug to manifest. If you experience any serious
adverse effects, notify your doctor.
Skin rashes and pigment change. Atabrine, specifically, can cause yellow pigmentation of skin. Sometimes
Plaquenil can also deposit in the tissues of the body and cause the skin to take on a greenish tone.
Dry skin
Loss of appetite
Abdominal bloating
Upset stomach
Stomach cramps
Retinal damage – There is a small chance that retinal damage will occur while taking hydroxychloroquine
(Plaquenil) or chloroquine (Aralen). For this reason, you should see your ophthalmologist at least once per year
so that she/he may check for retinal deposits. Retinal damage caused by hydroxychloroquine is generally
reversible, but damage caused by chloroquine may not be. More information on this effect can be found
above.
Less common side effects:
Headaches
Muscle aches
Weakness
Nervousness, irritability, dizziness (although these effects are uncommon)
Major neurological side effects: confusion, seizures – These are quite rare, but if you experience them, alert
your doctor immediately.
Exacerbation of psoriasis – If you have psoriasis, Plaquenil may make your condition worse. Talk to your
doctor if you have this condition.
What are steroids, and why are they used to treat lupus?
Steroids are a group of chemicals that make up a large portion of the hormones in your body. One of these
steroids, cortisone, is a close relative of cortisol, which the adrenal glands in your body make as a natural anti-
inflammatory hormone. Synthetic cortisone medications are some of the most effective treatments for reducing the
swelling, warmth, pain, and tenderness associated with the inflammation of lupus. Cortisone usually works quickly
to relieve these symptoms. However, cortisone can also cause many unwelcome side effects, so it is usually
prescribed only when other medications—specifically NSAIDs and anti-malarials—are not sufficient enough to
control lupus.
The word “steroid” often sounds frightening because of the media attention given to the anabolic steroids that
some athletes use to put on muscle. However, it is important to remember that steroids make up a large group of
molecules with different functions, and the steroids given to treat lupus—specifically, corticosteroids—are different
than those you may hear about on the news.
Sometimes lupus flares can be treated with an intra-muscular (IM) injection of a drug called Triamcinolone. These
injections are usually given at your doctor’s office, and they often reduce flares without some of the side-effects
that would accompany an increase in the dosage of an oral steroid like prednisone. Usually, the only noticeable side
effect of these injections is a dimple or loss of pigmentation at the injection sight.
Steroids can also be given intravenously (IV) in the form of methylprednisolone (Solu-Medrol), and your doctor may
prescribe higher doses of methylprednisolone (1000 mg) given over 3-5-day period. These treatments are often
referred to as “pulse steroids.” Other forms of steroid medications commonly given for lupus are hydrocortisone,
methylprednisolone (Medrol) dose packs, and dexamethasone (Decadron) tablets. These medications vary in
potency. For example, hydrocortisone is weaker than prednisone, methylprednisolone is stronger, and
dexamethasone is very potent. Ointments containing corticosteroids are also commonly prescribed for lupus
rashes.
Changes in appearance
Acne
Development of round/moon-shaped face (sometimes called “Cushing’s syndrome” after the physician
who first described it)
Weight gain due to increased appetite
Redistribution of fat, leading to swollen face and abdomen, but thin arms and legs
Increased skin fragility, leading to easy bruising
Hair growth on the face
Psychological problems
Irritability
Agitation, psychosis
Euphoria/depression (mood swings)
Insomnia
Increased susceptibility to infections
Stomach irritation, peptic ulceration
Irregular menses (periods)
Potassium deficiency
Aggravation of the following preexisting conditions:
Diabetes
Glaucoma
High blood pressure
Increase in:
Cholesterol
Triglycerides
May suppress growth in children
Long term side effects:
Avascular necrosis of bone (death of bone tissue due to lack of blood supply):
Usually associated with high doses of prednisone taken over long periods of time.
Produces pain, including night pain. Pain relief usually requires either a core bone biopsy or total
surgical joint replacement.
Occurs most often in hip, but can also affect shoulders, knees, and other joints.
Osteoporosis
Cataracts
Glaucoma
Muscle weakness
Premature atherosclerosis – narrowing of the blood vessels by cholesterol (fat) deposits.
Pregnancy complications –Doses of 20mg or more have shown to increase pregnancy and birth complications, such as preeclampsia.
Diet
A healthy diet is important for everyone, but it is especially important for people with lupus and those taking
steroid medications. While taking steroids, your cholesterol, triglyceride, and blood sugar levels may increase. For
these reasons, it is absolutely essential that you not increase your calorie intake and follow a low sodium, low-fat,
and low-carbohydrate diet. You do not need to cut out all of the foods you love, but concentrate on eating whole
grain breads and cereals and lean sources of protein such as chicken and fish.* When you need a snack, look to
vegetables—they are low in sugar and calories and provide the perfect food for “grazing.” Try to eat them without
Ranch dressing or vegetable dip, because these items carry lots of fat and calories. If you need something to
accompany your vegetables, try lighter dips like hummus. It is also important that you minimize alcohol intake
when taking steroid medications, since steroids may already irritate your stomach. In fact, it is best not to drink
alcohol at all, because combining alcohol with certain lupus medications can be very harmful to your liver.
Steroids may deplete certain vitamins in your body, such as vitamins C, D, and potassium. Your doctor may
recommend for you to take supplemental vitamins or increase your intake of certain foods in order to make up for
these deficiencies. Usually it is beneficial to take a multivitamin every day, but speak with your doctor to see which
one is right for you, since some vitamins can adversely affect certain conditions. For example, people with
antiphospholipid antibodies, especially those taking anticoagulants such as warfarin (Coumadin), should avoid
vitamin K because it can increase the risk of blood clots.
Osteoporosis
Steroids can also contribute to a thinning of the bones known as osteoporosis, which may put you at an increased
risk for bone fractures. Your doctor may prescribe a drug for osteoporosis or advise you to take a calcium or
hormone supplement. Bisphosphonates such as Actonel, Fosamax, and Boniva are commonly prescribed, as are
parathyroid hormone (Forteo) and other medications. To help keep your bones as strong as possible, try to increase
your intake of calcium and vitamin D. Calcium helps to keep bones strong and vitamin D helps your body make use
of calcium. Foods high in calcium include milk and milk products, tofu, cheese, broccoli, chard, all greens, okra, kale,
spinach, sourkraut, cabbage, soy beans, rutabaga, salmon, and dry beans.
Staying Active
In addition to increasing your risk of osteoporosis, steroid medications can weaken your muscles. Staying as active
as possible will help you to maintain strong muscles and bones. Weight-bearing activities such as walking, dancing,
and running will help your muscles stay strong and healthy. Many people report that these activities make them
feel better mentally as well. In fact, there are actually chemicals in your brain triggered by significant exercise
(usually about 30 minutes per day) that help you to attain a “natural high.” Your doctor can help you to assess your
personal condition and decide on an exercise routine that is best for you. However, you should never put yourself
through more than reasonable discomfort when exercising.
Smoking
People with lupus should never smoke due to their increased risk of cardiovascular disease. Steroid medications
increase this risk by upping blood pressure, triglycerides, and cholesterol. Smoking, steroids, and lupus make a very
bad combination.
Infection
Steroid medications can also increase the risk of infection; this risk increases if you are also taking
immunosuppressive drugs. For this reason, it is important that you try to avoid colds and other infections. Washing
your hands regularly is perhaps the best way to keep germs at bay. More serious infections can lead to serious—
even fatal—illness. The infections that most worry doctors are kidney infection, a type of skin infection called
cellulitis, urinary tract infections, and pneumonia. It is important to be on the lookout for any changes in your
health, because people taking steroids may not run a fever even though they are very ill. If these infections go
untreated, they could enter the bloodstream and pose an even bigger threat, so it is important that you notify your
doctor at the first signs of an infection or illness. In addition, live virus vaccines, such as FluMist, the small pox
vaccine, and the shingles vaccine (Zostavax) should be avoided because they may cause disease in individuals
taking steroid medications.
Eye Exams
Finally, since medications can increase your risk of cataracts and aggravate glaucoma, try to get an eye exam twice
a year. Notify your doctor of any major changes in your vision.
Are there other drugs that I might take while taking steroids?
Steroids are often given in high doses, which may increase the risk of side effects. Medications called
“immunosuppressive” drugs are sometimes prescribed in addition to steroids to help spare some of these
undesirable side effects. However, as their name suggests, immunosuppressive work to suppress the immune
system, so when taking these drugs, it is important to watch out for infection and notify your doctor at any sign of
illness. If you do acquire an infection, you may be prescribed an antibiotic or other medication, but be sure to stay
away from Bactrim, since this medication can cause flares in some people with lupus.
Because of the risk of osteoporosis, your doctor may also prescribe a bisphosphonate such as Actonel, Fosamax, or
Boniva. She/he may also recommend taking calcium or vitamin D supplements to reduce bone thinning. Your
doctor may also prescribe a diuretic to deal with bloating, fluid retention, and hypertension (high blood pressure).
In addition, since cortisone can cause elevated cholesterol, your doctor may prescribe statins such as Lipitor,
Crestor, Vytorin, or Caduet. These medications work to lower cholesterol.
∗ The omega 3 fatty acids in fish and fish oil also have anti-inflammatory properties, which may help to reduce
some of the discomfort in your joints and muscles.
Immunosuppressive medications are used to control more serious lupus activity that affects major organs, including
the kidney, brain, cardiovascular system, and lungs. Before prescribing an immunosuppressive medication, your
doctor may perform a biopsy of the kidney or affected organ system to evaluate the most effective course of
treatment. Sometimes immunosuppressive medications are given in addition to or instead of steroid therapy to
lower the dose of steroids needed and thus spare some of the undesirable side effects of steroid therapy. For this
reason, these drugs are sometimes called “steroid-sparing” medications or “adjuvant” (helping) drugs. Steroid-
sparing drugs usually have a two-fold benefit, since they often reduce or eliminate the need for steroids while also
improving lupus symptoms.
Because immunosuppressive drugs put down the immune system, people taking them are at an increased risk for
infection. Try to stay away from people who have colds or other illnesses, and make sure to wash your hands
regularly and maintain good personal hygiene. If you are also taking steroid medications, you may not realize that
you are ill because the steroid may suppress your fever symptoms. Contact your doctor immediately at the first sign
of any infection or illness.
In addition, immunosuppressive medications are known to increase the risk of cancer development later in life.
However, lupus itself is also known to increase the risk of cancer, so by controlling your lupus now and preventing it
from doing further damage to your body, immunosuppressive therapy may actually decrease your risk of
developing cancer. Either way, it is very important to control your lupus activity now to prevent other potentially
life-threatening complications.
People with lupus have overactive immune systems. Imuran works by preventing some of the cells involved in this
immune response (specifically, white blood cells [WBCs], or leukocytes) from spreading. Imuran is a “slow onset”
drug, which means it may take 6-12 weeks for you to notice its effects. It usually comes in pill form and has fewer
side effects than many other immunosuppressive medications. The most common and serious side effects involve
the stomach and blood cells. Nausea and vomiting can occur, sometimes with stomach pain and diarrhea. Taking
the medication with food may help to reduce these symptoms. Imuran can also decrease the number of certain
cells in your blood. For this reason, blood tests should be done regularly to determine your white blood cell,
platelet, and red blood cell count.
Less common side effects include liver test abnormalities, hepatitis (inflammation of the liver), pancreatitis
(inflammation of the pancreas, a gland behind the stomach, that can cause abdominal pain), or an allergic reaction
that can seem like the flu. During treatment, your doctor may perform tests for breakdown products (metabolites)
of Imuran that can help monitor how your body is reacting to the drug.
Even though Imuran is effective in treating serious lupus symptoms, long term use of this medication does increase
the risk of developing cancer. Your doctor can speak with you about this risk and any other concerns you may have.
She/he will work with you to minimize the side effects of your medications while also maximizing the benefits.
In addition to having regular blood tests (CBCs), you should notify your doctor if you experience any of the
following symptoms while taking Imuran: fever, a new rash, easy bruising or bleeding, or signs of infection. Be sure
to speak with your doctor before taking getting any vaccines or having surgery. In addition, consult your doctor if
you are pregnant, may become pregnant, or are breastfeeding, since Imuran can be harmful to your child.
Certain medications may interfere with Imuran, so be sure to notify your doctor of any other drugs you are taking.
Medications that can interfere with Imuran include the gout medication allopurinol (Aloprim, Zyloprim), warfarin
(Coumadin), some blood pressure medications including some ACE inhibitors (Accupril or Vasotec), olsalazine
(Dipentum), mesalamine (Asacol, Pentasa), and sulfasalazine* (Azulfidine).
Cellcept may cause some side effects. The most common effects include stomachache, nausea, vomiting, and/or
diarrhea. Headache, dizziness, sleeplessness, and tremors (involuntary muscle movements) may also occur. Skin
rashes can arise but are less common. Since lupus can also cause skin rashes, it may be difficult to determine
whether a rash is from your medication or your lupus. You should speak with your doctor upon detecting any new
rashes or symptoms.
Cellcept may also cause a reduction in the number of certain cells in your blood. A reduction in your white blood
cell count could increase your chance of infection. As with other immunosuppressive medications, it is important
that you try to avoid infection and notify your doctor at the first sign of illness. In addition, a reduction in red blood
cells caused by Cellcept may lead to anemia, which could make you tired or lead to easy bruising. Cellcept can also
reduce the number of platelets in your blood, which may also cause easy bruising or gastrointestinal bleeding
(bleeding anywhere along the pathway that food travels in the body). Obtaining periodic blood tests while taking
Cellcept can help you and your doctor to detect and correct these problems. Blood tests should be performed
frequently during the first several months of taking this medication and less often as more time passes.
People over 65 and those that have experienced ulcers or other gastrointestinal disorders should speak to their
doctors before taking Cellcept. People in these groups may experience an increased risk of side effects. In addition,
there may be an increased risk of developing cancer such as lymphoma and skin cancer when taking
immunosuppressives such as Cellcept. You should discuss this with your doctor before beginning this medication. It
is important to realize, however, that Cellcept may be the best way to control the kidney disease associated with
lupus, and that lupus too can cause cancer. Thus, prescribing Cellcept for your kidney involvement is not meant to
introduce new risk factors, but rather to treat the seriousness of your condition at this moment in time.
In addition, be sure to wear sunscreen when going outside and avoid prolonged sun exposure—even if you are not
taking immunosuppressive medications—since sunlight can also aggravate your lupus symptoms.
If you are pregnant, may become pregnant, or are breast-feeding, your doctor will strongly recommend that you
stop taking Cellcept due to the risk of birth defects. In addition, even though it is not known whether Cellcept
decreases the effectiveness of oral contraceptives, it may be able to reduce their concentration in the blood, so
other forms of birth control are advised. Antacids can also interfere with your body’s absorption of Cellcept. If you
need to take an antacid, do so at least one hour before or at least two hours after taking Cellcept. As with other
immunosuppressive medications, you should speak to your doctor before getting any vaccines or having any sort
of surgery.
Certain drugs may interact or interfere with the effectiveness of Cellcept. These medications include:
cholestercholestyramine (Questran), acyclovir (Zovirax), gancyclovir (Cytovene), azathioprine (Imuran), antacids
containing magnesium or aluminum hydroxide (such as Maalox, Rolaids, or Mylanta), oral contraceptives,
trimethoprim/sulfamethoxazole (Bactrim),* theophylline (Theo-Dur), phenytoin (Dilantin), probenecid (Benemid), or
aspirin and other salicylates.
Be sure to notify your doctor immediately if you experience easy bruising or bleeding, persistent or bloody
diarrhea, trouble breathing, fever, or any sign of infection.
Recently, the FDA issued an alert regarding a possible relationship between Cellcept and a serious neurological
disease called multifocal leukoencephalopathy (PML). A similar warning was issued regarding the drug rituximab
(Rituxan) in late 2006. PML is an extremely rare but fatal disease, but it is important to understand that Cellcept and
rituximab are not unique in their linkage to PML. PML is associated with conditions of severe immune deficiency,
such as AIDS, cancer, lupus, and the immunosuppression that can be involved in the treatment of those conditions.
Although immunosuppressive medications are effective in the treatment of lupus, your doctor can discuss with you
the risk of this possible relationship and the use of the immunosuppressive medications involved in your advised
treatment.
The starting dose of cyclosporine depends on your body weight (usually 2.5 milligrams [mg] per kilogram [kg] per
day). The dose is then increased depending on how well the medication works for you and how well your body
tolerates the drug. Cyclosporine comes in 25 and 100 mg tablets, and patients usually end up taking 75 or 100 mg
per day. You may notice some reduction in pain and swelling after about a week of taking the medication, but its
full effects are usually not felt for about 3 months.
Cyclosporine can cause some side effects. About 25% of people taking cyclosporine develop high blood pressure
(hypertension). In addition, because cyclosporine can be tough on the kidneys, it can cause a substance called uric
acid to build up in the blood (a state known as hyperuricemia). Sometimes this buildup of uric acid can cause gout,
a condition that causes intense swelling in one of the joints, often the the big toe. If you already have gout, your
condition may worsen while taking cyclosporine. Fortunately, many of these side effects go away as treatment with
cyclosporine is reduced or stopped, so your doctor can work with you to adjust your dosage if you begin to
experience these problems.
Other common side effects include headaches, stomach pain (including dyspepsia, a gnawing or burning pain in
the pit of your stomach accompanied by bloating), vomiting, diarrhea, and swelling in your hands or feet. Less
common side effects include tremors (unintentional muscle movements), increased hair growth, muscle cramps,
and numbness or tingling in your hands and feet (a condition known as neuropathy). Some people may also
experience swelling of the gums while taking cyclosporine. Be sure to brush and floss regularly; this routine may
alleviate some of this swelling.
Cyclosporine may increase your risk of developing certain types of cancer, including skin cancer. For this reason,
you should coordinate regular skin exams with your doctor. In addition, try to stay out of the sun and make sure to
wear sunscreen when you do go outside.
Do not eat grapefruit or drink grapefruit juice while taking cyclosporine. Grapefruit increases the amount of
cyclosporine that is absorbed by your body.
Like other immunosuppressive medications, cyclosporine increases your risk of infection, so make sure to wash your
hands and stay away from people who may be sick. Notify your doctor at the first sign of any illness. In addition, tell
your doctor if you plan to have any vaccines or surgeries, since both can pose risks for people taking
immunosuppressive medications.
Cyclosporine can cause serious complications during pregnancy such premature labor and high blood pressure and
fluid retention in your baby, so you should not take cyclosporine if you are pregnant or may become pregnant.
Also, do not take cyclosporine while breast-feeding, since it can be passed to your baby through breast milk.
Cyclosporine interacts with certain drugs, so be sure to notify your doctor of any medications you may be taking,
including prescription and over-the-counter drugs, supplements, and vitamins. Drugs that may interfere or interact
with cyclosporine include:
Heart and blood pressure medications: diltiazem (Cardizem, Tiazac), nicardipine (Cardene), verapamil (Calan,
Covera-HS, Isoptin, Verelan), “potassium sparing diuretics” amiloride (Midamor), spironolactone (Aldactone)
and triamterene (Dyrenium)
Cholesterol lowering medications: lovastatin (Mevacor) and simvastatin (Zocor)
Antibiotics and antifungals: clarithromycin (Biaxin), erythromycin, naficillin, fluconazole (Diflucan), intraconazole
(Sporanox), ketoconazole (Nizoral), and rifampin (Rifadin, Rimactane)
Anti-seizure (anti-epileptic) medications: carbamazepine (Tegretol), phenobarbital (Solfoton), and phenytoin
(Dilantin)
Antidepressants: nefazadone (Serzone) and the selective serotonin reuptake inhibitors (SSRIs) such as
paroxitine (Paxil), fluoxetine (Prozac), and sertraline (Zoloft)
Human immunodeficiency virus (HIV) protease inhibitors: indinivir (Crixivan), saquinavir (Fortovase, Invirase),
ritonavir (Norvir), and nelfinavir (Viracept)
Others: allopurinol (Lopurin, Zyloprim), bromocryptine (Parlodel), androgens (male hormones), estrogens
(female hormones), danazol (Danocrine), metoclopramide (Reglan), methylprednisolone, octreotide, ticlopidine
(Ticlid), cimetidine (Tagamet), methoxsalen (Oxsoralen), coal tar (Balnetar, Zetar), trioxsalen (Trisoralen)
Be sure to tell your doctor if you are taking any of these medications.
Disease-modifying antirheumatic drugs, better known as “DMARDs,” are immunosuppressive medications that are
used to treat the pain and swelling of the arthritis that can accompany lupus. DMARDs not only reduce this pain
and swelling, but they may also be able to decrease long term damage to your joints.
Methotrexate (Rheumatrex)
Methotrexate is one of the most commonly used drugs for the treatment of rheumatoid arthritis, and it is used in
lupus patients to alleviate the joint pain and swelling of polyarthritis (arthritis involving multiple joints). It is only
mildly effective for more severe lupus symptoms involving the kidneys and other organs and should be used
carefully in people with these conditions. Historically, methotrexate has been used to treat cancer and psoriasis, a
skin condition that can also affect the joints. However, in the late 1980s, the medication was approved by the FDA
for the treatment of arthritis and has been used commonly for this ever since. Methotrexate works by interfering
with the production of folic acid, which is a building block for growing cells in your body. As a result, methotrexate
hinders the growth of certain cells, including those of the immune system. This medication is also steroid-sparing,
meaning it can be used in conjunction with steroids to lower the dose of steroid therapy and thus also lower the
associated side effects.
The medication is usually taken as a tablet in doses of 7.5 to 25 milligrams (mg) per week, but it can also be given
as an injection. People taking methotrexate usually feel improvements in 3-6 weeks, but it can take up to 3 months
to feel the full benefit of the drug. Be sure to take this medication as directed. If you miss a dose, you can usually
take the medication up to 4 or 5 days after. However, if you miss this window, contact your doctor regarding how
you should proceed.
Most people taking methotrexate do not experience side effects and many of the more minor side effects will
decrease with time. However, the likelihood of these side effects does increase as your dosage goes up. Many of
the side effects of methotrexate involve the fact that the medication works by interfering with the production of
folic acid in your body. Therefore, your doctor will most likely recommend that you take folate supplements, which
will prevent many of these side effects, including mouth sores (stomatitis). Other side effects may include nausea,
vomiting, and an increased risk for abnormal liver function tests. Because of the danger to your liver, you should
not drink alcohol while taking methotrexate; drinking while on this medication can cause irreversible damage to
your liver. In addition, it is important that people taking methotrexate have normal liver function tests. Be sure to
tell your doctor if you have a history of liver disease. In addition, lung problems, such as a continuing cough or
shortness of breath, can occur while taking this medication but are more common in people with preexisting lung
conditions. Talk to you doctor if you experience these symptoms.
Some patients experience gradual hair loss (alopecia), but hair usually grows back once you stop taking
methotrexate. In addition, methotrexate can increase your sensitivity to sunlight. Since many lupus patients already
experience sun sensitivity, try to limit sun exposure and be sure to wear sunscreen when going outdoors.
It is important to remember that sometimes the side effects of this medication can go unnoticed; sometimes
people may have abnormal blood tests while feeling no side effects at all, so it is important to have blood tests
(complete blood counts, or “CBCs”) performed every 2-3 months while taking methotrexate.
If you are pregnant, may become pregnant, or are breastfeeding, you should not take this medication because it
can cause serious birth defects and complications during pregnancy. Women taking this medication should use an
effective method of birth control. Speak to your doctor about any pregnancy plans or concerns.
As with other drugs that may suppress your immune system, talk to your doctor about any vaccines or surgeries
you may have. In addition, be sure to notify him/her of any other medications, both prescription and over-the-
counter, that you may be taking. Methotrexate can interact with certain drugs, including the antibiotic trimethoprim
(Bactrim)* and NSAIDs such as ibuprofen (Advil, Motrin) and celecoxib (Celebrex). Do remember, though, that
sometimes methotrexate may be used in combination with certain NSAIDs to treat lupus. Your doctor will work with
you to determine which treatments will work best to treat your lupus symptoms with the fewest side effects.
Leflunomide (Arava)
Leflunomide is another DMARD used to treat the swelling, pain, and stiffness that many lupus patients feel due to
arthritis. It can either be prescribed alone or in combination with other treatments, such as methotrexate; often
leflunomide is prescribed for patients who do not respond well to methotrexate. Leflunomide works by blocking the
formation of DNA in the cells of your body, including those of the immune system. In hindering the formation of
DNA, leflunomide stops the body from producing the overactive immune cells that are responsible for the swelling,
stiffness, and pain in your joints.
Leflunomide is usually taken in tablets of 10 or 20 milligrams (mg) once a day. 6-12 weeks may pass before you feel
the full benefits of this medication, although your joint pain and stiffness will probably start to improve after just a
few weeks. It takes some time for the medication to build up in your body, so some doctors may prescribe
something called a “loading dose” when you first begin to take leflunomide. A loading dose is a large dose—about
100 mg—usually given once a week for three weeks in addition to your regular dose. Alternatively, some doctors
may give this loading dose over the first three days. This technique, however, usually increases the chance that the
person will develop side effects, including diarrhea. The good news is that the diarrhea usually goes away once the
loading dose is stopped.
Leflunomide does have several side effects. The most common side effect is diarrhea, which affects about 1 in 5
people, but this symptom usually goes away with time. In addition, your doctor can talk with you about taking an
anti-diarrheal medication to curb some of this discomfort. If the diarrhea persists, she/he may lower your dosage.
Other side effects include nausea, indigestion, rash, or hair loss (alopecia), but these effects are less common. In
addition, about 1 in 10 patients taking leflunomide have abnormal liver function tests or decreased blood cell
counts, so individuals taking this medication should have liver enzyme and blood count tests done regularly every
3-4 months. Because of this risk to your liver, you should not drink alcohol while taking leflunomide, and you
should tell your doctor if you have had liver problems in the past.
Women who are pregnant, may become pregnant, or are breastfeeding should speak with their doctor before
taking leflunomide, since this medication can cause serious birth defects and complications. In addition, women
should use an effective method of birth control while taking leflunomide and continue to do so until two years after
leflunomide is stopped, since the medication is known to remain in your body well after you actually stop taking it.
Men who want to have children should also talk to their doctor about stopping the medication. Anyone who is on
the medication and would like to have children should speak to their doctor about a medication called
cholestyramine (Questran), which can help eliminate leflunomide from your body.
As with other drugs that suppress your immune system, speak with your doctor about any vaccinations or surgeries
you plan to have and any other medications you may be taking, including prescription drugs, over-the-counter
medications, vitamins, and supplements. Medications that can interact with leflunomide include cholestyramine
(Questran), tolbutamide (Orinase), and rifampin (Rifadin, Rimactane), so be sure to tell your doctor if you are on
these medications.
Cytotoxic Drugs
Cyclophosphamide (Cytoxan)
Chlorambucil (Leukeran)
Nitrogen mustard (Mustargen)
Cytotoxic medications are a class of immunosuppressives that were originally developed (and are still used) to treat
certain types of cancer. The cytotoxic drugs usually prescribed to treat lupus symptoms are classified as alkylating
agents and are reserved for patients with more serious forms of lupus that involve organs such as the kidneys,
central nervous system, lungs, and blood vessels. Cytotoxic medications work against the cells of your immune
system that make antibodies (immunoglobulins). Usually, these molecules help the body to ward of infections and
other invaders. However, with lupus, these antibodies actually work against your own body and are produced at a
rapid rate. Cytoxic drugs fight the rapidly dividing cells of the immune system, but in doing so, they also work
against other rapidly dividing cells in your body, including blood cells, hair cells, and sex cells. As a result, cytotoxic
medications can have serious long term side effects. Even though cytotoxics have proven to improve the symptoms
of kidney, nervous system, lung, and blood vessel disease in lupus patients, it is important for you and your doctor
to evaluate the costs and benefits of cytotoxic therapy before beginning this treatment.
Cytoxan (cyclophosphamide)
Cytoxan is a cytotoxic medication usually reserved for lupus patients with serious kidney problems who have not
responded to other medications. The dosage of Cytoxan varies from person to person. It can be taken in tablet
form, but more often it is given intravenously (IV) at the doctor’s office. The IV procedure usually take about 15 to
60 minutes, and a medication may be given before to reduce any nausea you may feel. Doctors usually give
Cytoxan once a month for 6 months and then every 2 to 3 months for two years. It may take a few weeks or months
for Cytoxan to improve your lupus symptoms.
The side effects of Cytoxan range from mild to severe and may be worse when the medication is taken in tablet
form. Side effects include nausea and vomiting, which can sometimes be prevented with an anti-nausea medication
such as ondansetron (Zofran). Hair loss (alopecia) can occur, but hair usually grows back when the medication is
stopped. Skin rashes can also occur and be difficult to differentiate from lupus symptoms. Like other medications
that suppress your immune system, Cytoxan can increase your risk of infections, especially shingles and certain
“opportunistic infections,” infections that do not usually cause disease in healthy individuals. Therefore, it is
important that you wash your hands regularly, maintain good personal hygiene, and notify your doctor at the first
sign of any infection or fever. Also tell your doctor if you are to have any vaccines or surgeries, since your immune
system will be suppressed by Cytoxan.
More serious side effects include a reduction in white blood cell count, which usually occurs about 8-12 days after
starting treatment. Your doctor should perform blood tests at this time to determine whether your dosage should
be altered. In addition, Cytoxan can cause infertility in both men and women when taken for long periods of time.
However, an injection called leuprolide (Lupron) can be given to help protect your body against this sterility; you
may want to discuss this issue with your doctor before starting the medication. In addition, women can stop having
periods when on Cytoxan. However, you can still become pregnant, so it is recommended that you use a method of
birth control, since taking this drug can cause serious harm to the fetus. Be sure to talk to your doctor before taking
Cytoxan if you are pregnant, could become pregnant, or are breastfeeding.
Cytoxan can also cause certain bladder problems. In order to use this drug, your body must break it down into
several byproducts, one of which can irritate your bladder and cause scarring or blood in your urine. This side effect
is common, so you should drink plenty of fluids—at least 8 glasses of water—per day. If you are taking Cytoxan
intravenously, you may be given mesna (Mesnex) to prevent these bladder issues.
Because Cytoxan targets normal cells within your body in addition to those of the immune system, it increases your
risk of cancer. The more Cytoxan you take and the longer you take it, the greater your risk of developing cancer,
even later in life. Leukemia and bladder cancer are the most common form of cancer developed in patients taking
Cytoxan, so your doctor should perform urine tests regularly.
Cytoxan can interact with certain drugs, so be sure to tell your doctor about any medications you are taking, either
prescription or over-the-counter. Also tell him/her about any dietary supplements (including herbal supplements)
and/or vitamins that you may be taking. The following drugs can interact with Cytoxan: the gout medication
allopurinol (Aloprim, Zyloprim), phenobarbital (Solfoton), warfarin (Coumadin), thiazide diuretics, such as
hydrochlorothiazide, and some psychiatric medications. Be sure to notify your doctor if you are taking any of these
medications.
Nitrogen mustard was actually the first cytotoxic medication found to be effective in the treatment of lupus.
However, it is seldom used today because it is trickier to administer and it must be given intravenously in the
hospital. Your doctor will speak to you in more detail if this medication becomes involved in your treatment.
∗ People with lupus should not take Bactrim, sulfa antibiotics (e.g., Gantrisin, Septra), or sulfa diuretics (e.g.,
Aldactone), since these medications can cause lupus flares by increasing sun sensitivity and occasionally lowering
blood counts. If you are prescribed one of these medications, talk to your doctor about possible alternatives.
Treating Lupus with DHEA
DHEA (dehydroepiandrosterone) is a mild male hormone that is effective in treating some of the symptoms of mild
to moderate lupus. Unfortunately, this medication has not been approved by the FDA for the treatment of lupus,
but it can be useful for people who experience hair loss (alopecia), joint pain, fatigue, and cognitive dysfunction
(e.g., difficulty thinking, memory loss, distractibility, difficulty in multitasking). DHEA can also be effective against
osteoporosis.
DHEA does have some side effects, however, which include acne, facial hair growth, oily skin, and excessive
sweating. In addition, DHEA can lower the production of HDLs (“good” cholesterol) in some women. It can also
increase estrogen levels in postmenopausal women, so it is important for women in this category to obtain routine
cancer surveillance (mammograms, PAP smears).
It is very important that you do not take DHEA unless you are prescribed the medication by your doctor. DHEA
is often sold as a dietary supplement, but these over-the-counter tablets are not regulated and may be ineffective.
You must not treat yourself with DHEA unless it is prescribed to you by your doctor. If your doctor does decide
upon DHEA as part of your lupus treatment, you will need to obtain it from a compounding pharmacy. The dosage
given for the treatment of certain lupus symptoms is 200 milligrams.