Challenges in Reproductive Health in Rheumatic Disease

From the article: ”

In Dobbs v. Jackson Women’s Health Organization on June 24, the U.S. Supreme Court overturned Roe v. Wade, rescinding the protection of the right to safe and effective abortions and putting women’s reproductive health under the purview of the states. Abortion is likely to remain legal in only 20 states and the District of Columbia, and bans have already gone into effect in at least 24 states.1 Another effect: Pharmacies have begun refusing to fill prescriptions for methotrexate, an essential medication for patients with rheumatic disease, because it could also be used as an abortifacient prior to nine weeks of gestation.2

The ACR has made it clear that it opposes any action that interferes with the practice of evidence-based medicine or intrudes upon the doctor-patient relationship. And it has established an Access to Reproductive Health Care Task Force to explore options related to access to methotrexate and other issues.

When Michael D. Lockshin, MD, was a first-year medical student (Harvard Medical School, Boston, Class of 1963), he recorded data on pregnancies and deliveries at Boston Lying-In Hospital (now Brigham and Women’s Hospital). In what proved to be a catalyst for a long career of research in reproductive health and rheumatic disease, Dr. Lockshin encountered a pregnant woman with systemic lupus erythematosus (SLE). The patient and her baby, unfortunately, died in the hospital. At the morbidity and mortality conference that followed, the faculty had few answers to questions about the case. “We don’t know why, but lupus patients just die in pregnancy,” Dr. Lockshin remembers hearing.”

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Do physicians with less experience provide better care than do those with more?

The New York Times recently published an Op-Ed from a 29 year old physician writer who argued that younger doctors provide better medical care than older, more experienced physicians.

Dr. Warraich’s confidence in the wisdom of young doctors might be warranted were today’s medical “facts” always true, were acute-care medical procedures more important than doctors’ and patients’ long-term preferences, and were an administrator’s definition of “better quality of clinical care” more worthy than the patient’s desires.

Few young physicians understand how often their medical school lessons will later be found to have been wrong, because medical knowledge changes. My medical school class learned, with certainty, that anxiety causes peptic ulcers (the idea that ulcers can have a bacterial cause was thought insane), that autism is due to poor parenting, and that estrogen supplement corrects Nature’s error of menopause. Far from certain, cardiovascular medicine still debates whether interventional or pharmacological care best treats some types of heart disease. Has Dr. Warraich yet seen, or had to treat for decades, a patient permanently injured by a new procedure or drug based on an innovative thought that was later found to be wrong? It takes experience for doctors to learn when staying one’s hand may be a better choice.

Cardiologists like Dr. Warraich make decisions urgently. The goal is to prolong, not necessarily save, a life. The ICU vision of the cardiologist is narrow. Outside the ICU, in long-term illness—timing intervention to an optimal moment, deciding when not to intervene, negotiating choices, doing no harm—are the broader goals.

Innovation and new ideas are, of course, always welcome. So is asking the question, How do we know this is right? Although experience requires time to acquire, it leads to wiser judgement. Dr. Warraich has confidence in the new. Perhaps, as he grows older, he will value humility and caution as well.

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Autoimmune Disease: Does Sex Matter?


Autoimmune rheumatic illnesses tend to affect women more often than they do men. Patients, physicians, and researchers ask why this is so. What are the correlations between gender (or, more precisely, sex) and rheumatic disease?

For many years the best explanation to explain this female predominance has been the hormone theory: the thought that female hormones (estrogens – there are several forms) render women more susceptible to such diseases as systemic lupus erythematosus (lupus), Sjogren’s syndrome and rheumatoid arthritis. Recent research offers other possible explanations. Current possible explanations include:

  1. Hormone theory
  2. Environmental factors
  3. Genetic influences
  4. Whole-organism factors.

The discussion of these causes is somewhat complicated by disagreements on the definition of autoimmune disease. Most physicians agree that the following are all autoimmune diseases:

  • systemic lupus erythematosus (lupus)
  • rheumatoid arthritis
  • Sjogren’s syndrome
  • scleroderma
  • myositis
  • vasculitis
  • primary biliary cirrhosis
  • autoimmune hepatitis
  • Graves’ disease
  • Goodpasture’s disease
  • autoimmune hemolytic anemia
  • idiopathic thrombocytopenic purpura
  • Hashimoto’s thyroiditis.
 Some (but not all) physicians include the following on this list:
  • ankylosing spondylitis
  • reactive arthritis (sometimes called Reiter’s syndrome)
  • chronic Lyme disease
  • pemphigus
  • vitiligo
  • myasthenia gravis
  • multiple sclerosis
  • juvenile onset (type 1) diabetes.

Still other physicians include illnesses that have biological features similar to those in autoimmune diseases but which are not usually thought of as autoimmune diseases, such as ulcerative colitis and Crohn’s disease.

Current Theories of Sex Predominance

Hormone Theory

Hormone theory refers to the belief that high levels of estrogen increase women’s risk to develop autoimmune disease (or that the testosterone in males reduces their risk). Scientific data from mice and humans indicate that estrogen increases immune responses measured in many different ways. This supports the concept that the female predominance in lupus and other autoimmune rheumatic diseases is caused by the immune system overreacting to the body’s own tissues more often in women than in men.

A problem with this analysis, however, is that the female-to-male ratio varies greatly, depending on which disease is analyzed. In lupus and Hashimoto’s thyroiditis the ratio is 9 to 1, but in scleroderma and rheumatoid arthritis it is only 2 to 1. The ratio is also 2 to 1 in some other autoimmune diseases, such as autoimmune hemolytic anemia or idiopathic thrombocytopenic purpura, which are both very similar to lupus. Conversely, in Goodpasture’s syndrome (in which the body creates antibodies that attack the lungs and kidneys in a manner very similar to what happens in lupus) it is males that predominate, with a ratio of 3 to 1.

In addition, one might expect that, if estrogen were the main factor driving disease, the severity as well as the frequency of the illness would be greater in women. But this is not the case. In fact, according to some researchers, males with autoimmune diseases have more severe cases than their female counterparts. Women do appear to respond more vigorously to immunizations (experiencing higher production of antibodies production), but it is unknown whether this is related to their being more susceptible to autoimmune diseases. Estrogen levels change during the menstrual cycle, during pregnancy (in which estrogen levels are extremely high), and with menopause, but disease severity varies little, if at all, during the menstrual cycle. Pregnancy does not exacerbate lupus. Birth control pills before menopause or hormone replacement therapy after (both of which affect estrogen levels) do not change the course of lupus.

For all these reasons, it is unlikely that estrogen is the most important cause of the sex discrepancy of autoimmune illness.

Environmental Factors

Some autoimmune diseases appear to be caused by exposure to external toxins, such as medications or environmental pollutants. Scleroderma, for example, once occurred at unusually high frequency among male gold and coal miners. This circumstance was attributed to their exposure to silica. After better protections against silica were devised, this unusual frequency of scleroderma in males disappeared. Drug-induced lupus was common illness in the 1960s and 1970s, usually induced by medications used to treat high blood pressure and abnormal heart rhythms. Drug-induced lupus occurred mostly in men, because they were the ones who were most likely to receive the causative drugs.

In the 1970s, in Spain, an epidemic of scleroderma-like disease affected 10,000 people, almost all of whom were women. The cause of the epidemic was contamination of a commonly used brand of cooking oil. The reason for this sex difference appears to be that, while both men and women ate the food cooked with the contaminated oil, more women tasted the food as it was cooking, before heat destroyed the contaminant. Fully cooked food was not harmful.

Another example is an epidemic of scleroderma that occurred in men who manufacture polyvinyl chloride (PVC, a common plastic used in many products). To make PVC, a slurry of single (called monomeric) vinyl chloride molecules is heated to a very high temperature in large vats, whereupon the monomeric pieces fuse together to become polyvinyl chloride. The men who cleaned the vats inhaled the residual monomeric vinyl chloride that was still in the air and developed scleroderma. The manufacturing process was changed and the epidemic ended.

In a specific river area of Brazil, an autoimmune skin disease called pemphigus foliaceus is associated with bites of a black fly that lives near the river. Men who fish this river are more likely to develop the disease than are women, who do not go near the river; elsewhere in the world, pemphigus foliaceus is primarily found in women.

Recently, scientists have started looking at a different kind of environmental factor – the microbiome – as a possible cause for sex discrepancy. The term “microbiome” describes the families of bacteria that live on all normal healthy people – in their mouths, on their skins, in their intestines and (in women) in their vaginas. Men and women differ in their microbiomes, and specific microbiome patterns are associated with specific illnesses. Details of how and why these associations occur are not yet known. Future studies may find that differences in male and female microbiomes are related to sex ratios of autoimmune illnesses.

The above examples support the idea that the different environmental exposures of the sexes may determine who develops autoimmune illnesses, but we do not yet have a smoking gun. Semi-seriously, researchers have even considered whether exposure to hair dye or lipstick might explain the differences, but to date there is no single cause-and-effect link.

Finally, behavior can influence development of disease. Examples include osteoporosis (which develops more frequently in people who do not exercise), atherosclerosis (which is affected by diet and cholesterol), and injury-related osteoarthritis (for which competitive athletes have an increased risk). Diseases associated with venereal infection do not occur in those who have not been exposed. However, there is no known no specific behavior that is associated with any autoimmune disease.

Genetic Influences

Genetic differences, specifically those related to the X (female) chromosome, constitute another potential explanation for sex differences in illness. (Except for rare circumstances, women have two X chromosomes – one from each parent: Men have one X chromosome [from the mother] and one Y chromosome [from the father].) Every cell in every man’s body is different from every cell in every woman’s because of the X chromosome.

Women who have been pregnant carry their baby’s cells in their bloodstream for years after the pregnancy ends – even in cases of miscarriage – a circumstance called microchimerism. In normal women, the number of fetal cells in their bloodstreams decreases after birth. In women with autoimmune diseases, the cells continue at higher numbers for a much longer period of time, sometimes many decades. Diseases characterized by high levels of microchimeric cells include scleroderma, primary biliary cirrhosis, Sjogren’s syndrome, and autoimmune thyroid disease. In women who have thyroid nodules and who have been pregnant with male children, the cells within the nodules are often male (from the fetus), while the normal part of the thyroid is made up of female cells (the mother’s own). Women who breastfeed pass their own cells to their children, and sometimes the child’s cells pass backward through the breast to the mother. Some, but not all, researchers think microchimerism may be related to autoimmune disease but, as fascinating as this information is, scientists have not yet figured out its significance.

A new field, called epigenetics, offers a different kind of insight. Epigenetic science states that it is not a gene’s presence that is important, but how active that gene is. In other words, genes do not work exclusively in an off/on mode, but they produce their products, usually a protein, in varying amounts, with those variations being controlled by a variety of influences on the gene.

The most direct of these influences is what is called the “silencing” of one X chromosome in women. Chromosomes are made up of long strings of individual genes. Because women have two X chromosomes, the genes of one of the X chromosomes must be shut off or “silences”, so that a woman does not make twice the amount of protein as does a man. This silencing process fails in about 15% of the genes, and in a somewhat random way, so every woman is different. In the 15% of body processes controlled by genes which are not silenced, each individual woman will have either (a) twice as much gene activity as do men with the same gene or (b) active versions of both her father’s version of the gene and her mother’s version of the gene. Gene silencing patterns can even be different between two female identical twins.

There is also a different way in which epigenetics may work. In some cases, an X-chromosome gene that is not correctly silenced may sometimes govern the activity of genes on other (non-X) chromosomes. There is now strong evidence that X-chromosome-controlled epigenetic activation of some genes associated with abnormal inflammation is closely associated with such diseases as lupus.

Finally, if this were not confusing enough, epigenetic gene activation can be altered by some external factors, including diet and medications. There is even evidence that what a pregnant woman eats can affect how her baby’s immune system will respond in future life – and that the effect will be different for baby boys than for baby girls!

Whole-organism Issues

Whole-organism issues – things that have nothing directly to do with sex or genes – may also be a part of the picture.

For example, osteoporosis is, in part, dictated by body size. Very heavy people are less likely to develop osteoporosis than are very thin people because their bones must become stronger to support the extra weight. In addition, since the disease depends in part on how big the bones are, among heavier persons, taller people (who have larger bones) are less likely to develop osteoporosis than shorter people.

Other examples of whole-organism issues in disease: The likelihood of a woman developing breast cancer may be influenced by how many children she has, and Alzheimer’s disease is linked with aging. (Some researchers think that autoimmune disease reflects premature aging of the immune system.) Of course, all of these things can be influenced by heritage, environment and many other events. The influence of whole-organism issues in autoimmune disease is weighed based on such multifactors, not just a single component.

Many researchers think that autoimmune illness begins long before it causes symptoms and that, someday, we will be able to detect the disease by blood tests long before a patient experiences the first symptom. If and when this happens, it is likely we will then begin looking at very different potential causes of autoimmune illness – those occurring, perhaps, just before the time of the true onset of disease (as opposed to the onset of symptoms). Perhaps these new thoughts regarding the origins of autoimmune rheumatic diseases will explain sex differences in a completely unexpected way.


There are many possible ways to explain why more women suffer from autoimmune rheumatic diseases than do men. Reasons might include environment, hormones, behavior, genetic differences, a combination of some or all of these factors, or things we do not yet understand. Today the most accepted explanation for the female predominance of autoimmune rheumatic disease is the way the X chromosome controls genes related to inflammation and immunity. It is also likely that hormones modify disease processes in some way. We have not excluded – and some strange epidemics in fact suggest – that an environmental exposure is a contributing factor to disease development.

What we understand today about the sex differences of autoimmune disease is just the beginning of an ongoing investigation and discussion that may, in the future, lead to completely new ways of thinking about, diagnosing, and treating autoimmune disease.

Additional Reading

If you are interested in reading more about the relationship between sex and disease, you may be interested in the following sources.

Books for sophisticated but not technically expert readers

Exploring the Biological Contributions to Human Health: Does Sex Matter? This book compiles a vast range of writings on the role of sex in a range of diseases, not just autoimmune illnesses. It is available for purchase or for free in PDF form online at

The X in Sex: How the X Chromosome Controls Our Lives by David Bainbridge. (ISBN-10: 0674010280 or ISBN-13: 978-0674010284)

Y: The Descent of Men by Steve Jones. (ISBN-10: 0618565612 or ISBN-13: 978-0618565610)

Recent, highly technical reviews

Rubtsova K, Marrack P, Rubtsov AV: TLR7, INFγ, and T-bet: their roles in the development of ABCs in female-based autoimmunity. Cell Immunol 2015 April; 294(2): 80-83.

Margery-Muir AA, Bundell C, Nelson D, McGroth DM, Wetherall JD. Gender balance in patients with systemic lupus erythematosus. Autoimmunity Reviews 2017;16: 258-268.

Klein SL, Flanagan KL. Sex differences in immune responses. Nature Rev Immunol 2016; 16:626-638. Doi: 10.1038/nri.2016.90

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6AM Sunday 6/4 — WFAN Sports Radio 660 AM & 101.9 FM NYC

For those in NYC: set your alarm now! Sunday June 4, 6AM – 7AM – LIVE – I will be talking medical uncertainty to Bob Salter of WFAN Sports Radio 660 AM & 101.9 FM NYC. A one hour discussion about my new book The Prince at the Ruined Tower. Definitely worth getting up for this interview!

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Time to Write the Senate at

Republican senators are working on a healthcare bill in secret, hoping to pass a bill that will mimic the Trumpcare bill that the House recently passed.

Please write to to tell these senators that the American Public deserves better.

Here is the email I sent this morning:

To whom it may concern:

I am a physician who cares for patients in all economic strata, including the uninsured. I have been in practice long enough to have seen what happened to health care in the Reagan era. The inequalities that exist between identical patients simply because of their access to health insurance is, to me, unacceptable, even today. The Affordable Care Act (Obamacare) is a major step forward in improving the inequalities and the inability of some people to obtain healthcare.

The barely spoken of process of the House of Representatives, and now, apparently, of the Senate, to reduce access by reducing the number of people eligible for Medicaid, and by potentially removing Medicaid subsidies, is not acceptable. To attempt to pass a bill without public debate, without cost accounting by the CBO, and against the expressed wishes of a majority of Americans and a very large number of professional health organizations is outrageous.

I urge you to debate the issue openly and seriously. Do not let America fall further among nations in the way in which it provides health care for its citizens.

Michael D. Lockshin, MD, MACR
Director, Barbara Volcker Center for Women and Rheumatic Disease
Hospital for Special Surgery
535 East 70th Street, New York, NY 10021

Professor of Medicine and Obstetrics-Gynecology
Weill Cornell Medicine

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The Prince at the Ruined Tower: Time, Uncertainty & Chronic Illness Released

The noted physician, Dr. Michael D. Lockshin, Professor of Medicine and Obstetrics-Gynecology at Weill Cornell Medicine and Director of the Barbara Volcker Center at the Hospital for Special Surgery, explores seldom discussed issues of contemporary medical practice—how should and how do patients respond when diagnoses are uncertain? How should and how do doctors respond? Or insurers and other administrators? How do each of these groups balance short-term versus long-term goals? The Prince at the Ruined Tower:Time, Uncertainty & Chronic Illness is a book about patients, doctors, and the health care system written by a physician with broad experience in the world of chronic illness.

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Ask the Expert: Travel Tips for Rheumatology Patients

It?s vacation time, and people travel. For those travelers living with a rheumatic disease, it?s best to plan and prepare. Here are some things to consider:

1. Protect your joints: airports, luggage, and long rides

Do you have problems with your joints?

Joint pain is the most common symptom of rheumatic illnesses. Many of our patients have had joint replacement surgery.

Are your muscles weak?

This is also a common problem, especially if you protect a painful joint when you walk or use your arms or legs, so that your muscles don?t get exercise. Some medications, especially prednisone, will weaken muscles.

Do your medications make you sleepy?

If any of these questions are true, think ahead. Imagine every moment of where you will be as you travel. Can you sit in one position for a long time in an airplane or car? Can you get in and out of your seat? If not, make arrangements ahead of time to get up in the airplane or stop the car to stretch. What about the safety inspection and boarding areas? Can you carry or rollyour luggage? Can you put it on a conveyor belt or take it off? Do you need assistance? None of these are impossible problems to solve, but you should think about them ahead of time and be prepared. Airplane companies will provide wheelchairs and porters to help you, as will most hotels and tour guides. Know if there is a fee for assistance, and know what you will or will not have to do. Before you sign up for that tour, be sure that you will be able to do all that the hiking or riding or climbing will require.

2. Customs and other issues

What medicines will you carry with you?

Customs officials may confiscate them if they have concern about contraband or illegal medications. If you use injectable medicines and carry bottles and syringes and needles, be aware. Mostly there is no problem?if you have with you a detailed doctor?s note that explains the medication, says how it is used and makes it clear (usually by giving details of your diagnosis) that you must take the medication. It is best if the doctor?s note offers telephone availability, if necessary, to discuss your needs. It?s even better if, in a foreign land, the note is in both English and the language of the country. That usually impresses the customs officials, and, in my experience, no one has ever called. Also, if your medicines have to be refrigerated, be certain that you prepare the appropriate packaging ahead of time and clear it with the airline. Some carriers have rules about what you can take on board. With the right information, they will usually accommodate your needs. If you have to take an injection during a flight, be certain that the airline is aware.

3. Doctors, hospitals, medications?and maintaining contact

If your illness is in any way complicated, please ask your doctor to provide you with a letter (English is always OK, since you can almost always find an English-speaking doctor; translation helps) that explains your problem or problems, expected complications (if any), and, of course, all your medications. I often find it helpful to identify doctors or hospitals in the area my patient is traveling, and to give the patient the names and contact numbers. It?s best if I personally know the doctors; if not, the American College of Rheumatology membership list identifies rheumatologists geographically in most areas of the world; it is available online at ?(or and follow the links).

If my patient is particularly at risk, I will invite him or her to telephone or e-mail me in the event of a problem. Not every doctor does that, but most will for specific circumstance, and having this kind of access can be very important. A telephone call and some emails saved the life of one of my patients who had a major emergency when she was in London (there was confusion about some of her laboratory tests and medications); another time I helped a patient get a critical medication she had run out of while in mainland China. An ?I?m having a great time and am fine? e-mail is very reassuring to the doctor.

4. Vaccinations and illnesses (without and without immunosuppression)

Vaccination rules change frequently, depending on what is happening in various parts of the world at any time. The United States Government, Centers for Disease Control, maintains a website that gives current information regarding illnesses and requirements for travel in the entire world, . For vaccinations, listed by country, go to

I have a few general rules that I tell my patients.

  • You should be up to date on standard vaccinations, such as pneumonia and flu
  • If you are taking immunosuppressive medication, you can take killed or synthetic vaccines, but you should not take live-virus vaccines. The injectable flu vaccines are killed virus; the aerosol flu vaccine is live. Check the CDC sites for details.
  • If you are travelling only to large cities and civilized beach areas, you can usually skip the more exotic vaccines. If you are going into a jungle, however?
  • It is usually worthwhile to carry a full dose of a simple, common antibiotic, with instructions from your doctor about circumstances in which it will be wise to take it.
  • If you fall ill, especially in the first several weeks after your return, tell your doctor everywhere you have been. Some illnesses, like Lyme disease and Rocky Mountain spotted fever, occur in specific places at specific times of the year. Others occur in outbreaks, like dengue and Chikungunya fever, recently in the Caribbean.
  • A special case, Montezuma?s revenge (travelers? diarrhea)

Unfortunately, diarrhea and travel are companions. To protect yourself, wash your hands frequently, especially after handling money, and, of course, be careful what you eat. If you get diarrhea, be sure to stay well hydrated, including taking enough salt. If you don?t have fever and don?t see blood, it will probably subside in a day or two. Usually something simple, such as Pepto-Bismol or Lomotil, will help?check with your doctor before you leave to see if you can take these. In most cases an antibiotic is not necessary; if you do take one, Cipro or Levaquin are most often used. Again, CDC provides good information,

If you do have fever, see blood, or faint, you should contact a doctor.

But most likely you won?t need any of these warnings, so the only other instruction I will offer is this: have a great time!

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Lupus & Sun Sensitivity: What You Need to Know

Summer is here! The sun will be out! And so it is time for those perennial questions from lupus patients: Am I sun-sensitive? What will happen to me if I go into the sun? How much sun is dangerous? Should I wear sunscreens? Here are some factoids for you.

  • Patients who are sun-sensitive show that sensitivity in several ways. Most commonly rash appears, or gets worse. Sometimes, however, they develop joint pains, fever and other signs of general flare-up.
  • Sun-sensitivity symptoms can show up several days or even a few weeks after heavy sun exposure.
  • Only about one out of three lupus patients is sun-sensitive. If you don’t know if you are, or are not, sun-sensitive, it’s OK to try a little (early morning, late afternoon) exposure for a few minutes. If you don’t have any symptoms in a few days, increase a little bit, and continue until you know that you can tolerate full sun exposure. It’s always safest to avoid very strong sun (beaches, sailing, golf courses), and to use the strongest available sunscreens.
  • If you do think you are showing signs of a flare-up, check with your doctor right away. Many sun-induced flare-ups are very mild, but some are not, and they may need treatment.
  • If you know that you are not sun-sensitive, it is very unlikely that it will later develop. If you know that you are sun-sensitive, assume you will always be.

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Your Lupus Questions Answered, Part I

Recently, Hospital for Special Surgery and SLE Lupus Foundation hosted a Facebook chat on Lupusand General Health. Participants asked many questions, but our room full of experts could only answer as much as they could during the one-hour live event. We will run a series on our experts answers. For our first installment, rheumatologist, Dr. Michael Lockshin, answers questions on medication and treatment.

The information provided is for informational and educational purposes, and does not constitute medical or health advice for any individual problem. Please consult with your health care providers for any health problem and/or prior to starting any new medication or changing or discontinuing any medication you have been prescribed. This chat is not intended to create a doctor-patient relationship, or any other duty, between you and any member of the HSS interdisciplinary team or SLE Lupus Foundation.

Q1. Is it common for Sjogren’s to present itself as the primary issue in patients who typically have SLE as the primary disease? I was misdiagnosed with 3 different things, one of the chronic candida before they realized what it was. I was seriously malnourished from not being able to eat.

One of the things that doctors do not speak about very much is the overlap of several autoimmune diseases in the same patient. It is a problem that we are studying right now and hope to help other doctors understand. If the patient has one diagnosis, such as lupus, consider the possibility that a second, such as Sjogren’s, is also present.

Q2. I have been on a home health nurse for IV medications and also hospitalized 2 times since surgery due to not responding to any antibiotics being used. Is this common for SLE?

It is hard to tell without knowing the specifics. Infections in some parts of the body, for instance bones, are very hard to get rid of. Some types of infecting germs do not respond to antibiotics. People on high doses of immunosuppressive drugs cannot fight infection well. Any or all of these things may explain your problem. I would not call it common, but we certainly do see such problems in SLE patients.

Q3. If a patient has a positive ANA along with numerous symptoms and is diagnosed with SLE, but then later has a negative ANA, does this mean it is not lupus even though they are still experiencing lupus symptoms?

First, there are several ways to do an ANA test, and some are more prone to be falsely negative than are others. Second, the symptoms may be due to treatment of lupus rather than to the disease itself. To determine whether symptoms are due to lupus, it is necessary to put all of the available information together, not just the ANA.

Q4. As a 47 year old woman living with lupus for over 32 years, what are the questions I should be asking? The tests I should be taking? The signs and symptoms to notice?

Lupus causes many symptoms, so it is hard to give specific advice to any one person. Things that are common after many years are osteoporosis, particularly if you have taken steroids for any length of time. You can test osteoporosis with a bone density test. You will also want to know that your blood pressure is normal and that your urinalysis is normal. Most other things will cause symptoms.

Q5. How effective is low dose chemo in treating a flare?

There are several ways of answering this question. There is a lot of interest these days in using several chemo drugs simultaneously, each low dose, rather than one at a time in high dose. In England, rheumatologists use cyclophosphamide (Cytoxan) in smaller doses more frequently than we do in the United States, and it seems to work just as well either way.

Q6. I have lupus and my daughter has Hashimoto hypothyroid since the age of 9. At first, they thought it was lupus. Is there a chance she will develop lupus with her also having Arnold chiari malformation and scoliosis? When is there a proper time I should check for lupus?

Hashimoto thyroiditis is very common not only in lupus patients, but in families of lupus patients. By itself, it does not increase your daughter’s chance of developing lupus, which is about 1%. There is no point in testing her because most patients with Hashimoto have positive antinuclear antibodies. I would test her only if she develops symptoms. The chiari malformation and scoliosis are unfortunate, but are unrelated to either Hashimoto or lupus.

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Lupus and the Brain, Lupus and Pain: Questions Answered

On May 14, Hospital for Special Surgery and the S.L.E. Lupus Foundation hosted a Facebook chat onLupus and General Health. Participants asked more than 160 questions, but our room full of experts could only answer 61 during the one-hour, live event. We categorized the remaining questions, and will run a series of our experts? answers over the next month. For our first installment, rheumatologist Dr. Michael Lockshin answered questions on neurological involvement and pain and flares.

The information provided is for informational and educational purposes, and doesn?t constitute medical or health advice for any individual problem. Please consult with your health care providers for any health problem and/or prior to starting any new medication or changing or discontinuing any medication you have been prescribed. This chat is not intended to create a doctor-patient relationship, or any other duty, between you and any member of the HSS interdisciplinary team or the S.L.E. Lupus Foundation.

Neurological Questions

Is memory loss common in lupus patients? I don’t have neurological involvement just lung involvement.

It is fairly common, maybe among 1/3 of patients after 10 or 20 years of illness. The neurological involvement is generally mild (it does not progress to dementia), and we are just beginning to recognize this symptom and explore to whom it happens and why. We cannot predict who will have neurological involvement right now, but we are doing studies to answer these questions.

My husband was diagnosed six years ago and the effects on him neurologically are devastating: brain, muscle weakness to the point of having to go on disability. Is there a chance that it could spread to other organs or remain neurological? Could he have an increased chance of stroke?

Lupus can affect any organ, but usually picks two or three organ systems and doesn?t go any further. So the answer to the question ?Is there a chance?? is yes, but the answer to ?Is it likely?? is no. What you describe does not increase the chance of stroke, but stroke does occur in patients with lupus for other reasons, such as high cholesterol.

My 42-year-old daughter was diagnosed with lupus about 10 years ago. Lately she has been ‘blacking out? a lot, and, in the process, has fractured her pelvis and hips. Are these black-outs caused by lupus, or could they be caused by one or more of the many medications she is currently taking?

Blackouts can be caused by heart abnormalities or seizures (due to damage caused by lupus) or from blood pressure or pulse being too low (caused by medications) or for other reasons. Your daughter should talk to her physicians and be reexamined because, as you have already discovered, blackouts can be dangerous and, generally, they can be treated and prevented.

I have dizzy spells where it feels like I?m drunk and it comes and goes. Could this be from lupus or is it something else? I was diagnosed with SLE five years ago, but this has just started this past week.

These spells could be due to lupus or to medication or to something simple like an ear infection. Your treating physician should be able to help sort out the cause.

I get headaches and migraines daily. Could this be a symptom of lupus?

There is a lot of controversy over whether migraines are due to lupus, since migraines are very common. Most doctors now think that migraines are not caused by lupus, but that active lupus makes migraines worse, and that some lupus medications may also worsen migraines.

My neurologist said 100% pain free is not realistic. Is this true? Are dysesthesias common with SLE?

I assume from the way in which the question is asked that the pain you refer to is the dysesthesias (pins and needles and numbness caused by nerve injury). It?s a rare symptom of lupus. When it first occurs it is possible to reverse it, but if dysesthesia has been present for several weeks or months, it likely will not go away completely. Medications are used to make it more tolerable.

Is there any current research regarding CNS lupus and APS, with any breakthroughs regarding new treatment approaches?

There is a lot of research going on with both CNS lupus and APS. You never actually know a breakthrough until it happens and is proven successful, but there many ideas in the air. Visit our website?for more information.

Is Ayurvedic medicine or naturopathic helpful with lupus? I was also diagnosed with epilepsy and want to know if there is a correlation with lupus and how it is diagnosed.

In my mind, neither is helpful, but others may disagree. Epilepsy can be a lupus symptom or can be independent of lupus. Generally to make the distinction, it is necessary to get a detailed history and do a thorough neurological examination, including a brain MRI. Sometimes drugs used to treat epilepsy cause a special type of lupus called drug-induced lupus, which is a different issue and is associated with specific blood tests (such as anti-histone antibody).

Flares and Pain Questions

I know there are different types of flare ups. What helps to keep the flare ups under control?

We don?t know exactly how to prevent flare ups, but certainly avoiding sun exposure, if you are sensitive to sun, is one way. Avoiding drug reactions by taking only medications that are absolutely necessary is another. The medication Hydroxychloroquine (Plaquenil) also helps prevent flares.

Is there anything that can really help with the pain? My toes hurt; I can’t bend them, ankles too. Recently my hips are bothering me.

It depends on the cause of the pain. What you describe are not typical symptoms of lupus, but you may have what we call an overlap syndrome with features of rheumatoid arthritis or bone damage from Prednisone or nerve damage. You can be helped, but it is necessary to know why you are having pain. Your physician can help you determine the cause.

Recently I was told I have high anca, which suggests lupus. I am waiting to see a specialist, but what can I do in the meantime? Swelling and flare ups becoming more regular.

Anca is associated with blood vessel inflammation and is common in lupus. A rheumatologist can help sort out the precise cause. If you are having trouble seeing one, call our Physician Referral Service at +1.877.606.1555 or contact the S.L.E. Lupus Foundation to help refer a physician in your area.

I have SLE. What can I do to ease the curving of my wrist and knuckles? Will a wrist brace help?

The first thing to do is to stop inflammation, assuming the curving is due to arthritis associated with lupus. A wrist brace will help if the inflammation cannot be controlled in other ways. Consult with your treating to determine best course of treatment.

Could you be in a constant flare for five+ years?

Yes, unfortunately, but most of the time, more aggressive treatment will bring the disease under control. Sometimes patients do not want to try these treatments because of the side effects. You may be able to work out a medication regimen with your doctor that will control the flare and not cause a lot of side effects. Every patient is different, so it really is a one-on-one doctor-patient discussion to know what is best for you.

Diagnosed first in 1988, remission then again in 1996, remission in 1999. Should I be worried about coming out of remission again? How do I know when a flare up happens? I?ve been in remission now for 14 years. I forget the symptoms of flare ups.

One of the worst things about lupus is it?s unpredictably. However, the longer you have been in remission, the less likely it is to come back. Fourteen years gives you a high likelihood of not seeing it again, and if you did, you would recognize it.

How long does a typical state of ?remission? last?

There is no typical state of remission. I?ve seen people who have one bout, even a series bout, and it never came back in 20-30 years. I?ve seen others with a best remission of only a few months. If a remission lasts five or more years, the chances of it not returning are high. In large populations of lupus patients, flare ups occur a little more frequently than once a year.

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