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ARTICLE CONTENT FOR MGFA CHAPTERS
TABLE OF CONTENTS:
1. 2011 MGFA National Conference
2. MGFA’s National Awareness Campaign
3. Worldwide Rare Disease Day
4. Traveling with Myasthenia Gravis
Judith Wilson RN, BA
5. MG and Pregnancy: Things to Consider
Robert L. Ruff, MD, PhD
6. Genes Underlying Myasthenia Gravis: GWAS update
Daniel B. Drachman, MD
7. What does the M/SAB do?
Henry J. Kaminski, Chair of the M/SAB
8. Development of a twin study for MG
Nicole Kerlero de Rosbo, PhD
9. Research Update
Linda L. Kusner, PhD
10. Myasthenia Gravis Remains a Grave Disease and a Costly One
Amer Alshekhlee, MD Case Western Reserve University
Henry J. Kaminski, MD Saint Louis University
11. The Benefits of Exercise for Folks with MG
Robert L. Ruff, MD, PhD,
Suzanne S. Ruff, Health Psychologist
12. For People with MG the Benefits from the New Swine Flu Vaccine Outweigh the
Possible Risks
Robert L, Ruff, MD, PhD
13. Genome-Wide Association Study (GWAS) in Myasthenia Gravis
Daniel Drachman, MD
14. Myasthenia Gravis and Vaccinations
Madeleine Batenjany, MSN, RN, ANP-C
15. Moving MG Research Forward
Henry J. Kaminski, M.D
16. Update on the construction of the MG-QOL15 and MG Composite
Ted M. Burns, M.D
17. Protein from tick saliva studied for potential myasthenia gravis treatment
18. Ocular Manifestations of MG
Robert L. Ruff, MD, PhD
19. Ask the Doctor
Robert Ruff, MD, PhD
20. Ask the doctor
Robert Ruff, MD, PhD
Elena Luchanok, MD
Henry J. Kaminski, MD
21. Ask the doctor
Robert Ruff, MD, PhD
1. 2011 MGFA National Conference
The National Conference will be May 4-6, 2011 at the Tremont Plaza Hotel in
Baltimore, Maryland. Conference and hotel registration is now available on the
MGFA website. (Link website to www.myasthenia.org) The theme of this year's
conference is Embracing Myasthenia Gravis, with many of the presentations focusing
on the daily management of living with MG. This year's lineup of speakers is strong
and we look forward to the valuable information that will be presented.
2. MGFA’s National Awareness Campaign
2011 marks the inaugural year of our national awareness and fundraising campaign,
the MG Walk: For a World Without Myasthenia Gravis. In the first half of 2011, the
walk will take place in at least seven locations across the country, including New
York City, Wisconsin, and throughout the state of Florida. This effort will raise funds
to help us continue to address the needs of individuals who are newly diagnosed with
myasthenia gravis as well as those who have had the condition for a longer time. For
more information on the MG Walk, visit http://www.mgwalk.org/
3. Worldwide Rare Disease Day
February 28th 2011 will mark the fourth International Rare Disease Day. This
annual, awareness-raising event is co-ordinated by EURORDIS at the international
level and the National Alliances of Patient Organizations at the national level in 25
countries. Hundreds of patient organizations from more than 40 countries worldwide
will be supporting the theme “Rare but Equal.” Activities are planned across Europe
and as far away as Russia, Georgia and Armenia, as well as in the United States,
Canada Australia, New Zealand, China and Japan.
This year’s campaign focus, “Rare Diseases and Health Inequalities,” seeks to draw
attention to gaps in health that exist for rare disease patients between and within
countries in the European Union, and gaps in health that exist for rare disease patients
compared to other segments of society.
The campaign also will serve to advocate for equal access for rare disease patients to
health care and social services; basic social rights of health, education, employment,
housing; and orphan drugs and treatments.
According to Yann Le Cam, CEO of EURORDIS, “People Living with Rare Diseases
should be entitled to the same access and quality of care as any other patients. But
today the reality is far from that. The rarity of patients, medical experts, knowledge
and resources are aggravating the vulnerability of rare disease patients who are
suffering from life threatening, debilitating, and chronic diseases. We are certainly
not asking for more or better access and care than for other chronic diseases. To the
contrary, we share the common cause of all chronic diseases.”
This year’s Rare Disease Day will be the third celebrated in the U.S. In the U.S. 30
million people are affected by rare diseases, of which Myasthenia Gravis is one, with
an estimated incidence of 20 people per 100,000. The Myasthenia Gravis Foundation
of America (MGFA) is a supporting partner of the event, which is sponsored in the
U.S. by the National Organization for Rare Disorders (NORD). Visit the U.S. Rare
Disease Day website and the global site for more information.
Advocates in the U.S. are encouraged to remain active beyond Rare Disease Day by
asking their members of Congress to join a Congressional Caucus formed in 2010:
the Rare and Neglected Diseases Caucus, which will provide an important forum for:
Bringing Congressional attention to the 6,800 known rare diseases that currently have
no approved therapies;
Ensuring sufficient funding for research and orphan product development;
Exploring ways to give companies incentives to create new drugs, biologics and
humanitarian use devices; and
Providing an opportunity for Members of Congress, families and advocacy groups to
exchange ideas and policy concerns.
Click on More information for details about the caucus and contacting your
representative.
4. Traveling with Myasthenia Gravis- Judith Wilson RN, BA
Myasthenia Gravis (MG) is a chronic neuromuscular disease that affects the strength and
stamina of voluntary muscles. Symptoms within muscle groups can vary from person to
person and can fluctuate by the day or month. Sometimes the illness can worsen for no
apparent reason. Unexpected changes in a patient’s condition present a special challenge
for patients who need or wish to travel. This leaves individuals and families of people
who have MG to question, “Is it safe to travel with MG?” and if so, “What do I need to
consider before traveling?”
Traveling is not impossible, however individuals with MG may require a more thoughtful
plan and scrutiny of their itinerary. There are helpful tips that can assist individuals with
MG to prepare for trips and special activities. These are intended to help you travel
wisely, remain safe, and ensure you enjoy your time away.
Planning
First, it is recommended to think about your overall medical condition and treatments. Consider
how stable your myasthenia gravis has been in the last year. Are you prone to fluctuations in
symptoms? If so, how sudden and severe are these fluctuations? Have you required a change in
medications or treatments? It is important to realize that psychological stress, infections, and
changes in weather conditions may exacerbate MG symptoms. Answering questions about your
overall health, your MG condition, and your response to changes in conditions may prove to be
helpful in planning your trip.
Consider discussing your travel plans with your family physician and/or MG specialist. They may
be able to provide you with a realistic comprehensive medical view on your condition. They can
assist you with a careful risk assessment based on where and how long you plan to travel and
environmental factors such as weather and infectious diseases that can challenge people with MG.
Ask your physician(s) for a copy of the most recent consultation note that summarizes your MG
condition and includes a list of your medications, dosages and other treatments. This will be
helpful to health care providers should you require assistance while traveling. Consider asking
your MG specialist about possible medical contacts they may have around your travel destination.
They may know of physicians who specialize in MG or a neurologist who may be contacted for
emergency services.
Another option is to consider discussing your destination and plans with a travel
medicine physician. Many cities have Travel Clinics that are staffed by travel medicine
physicians and nurses who specialize in travel medicine. Some are infectious disease
specialists. They are aware of current conditions and travel warnings for foreign
countries. Depending on your destination, they will be able to provide answers to
specific travel concerns. They may charge a small fee for their services.
There may be some areas of the world that will not be safe for you. If your MG is active
and you are taking immunosuppressive drugs, a risk assessment by trained health care
professionals may suggest that you not travel to a particular area. This is intended to
reduce potential harm especially if it is “absolutely contraindicated and the patient is at
high risk of infection or when the clinical condition of a patient may worsen because of
travel.” (Travel Medicine and Infectious Disease 2007 5, 7-17) If traveling locally,
people with MG often choose not to travel during the peak flu season or when there is an
outbreak of other contagious diseases.
MG is a relatively rare disease. While there are hospitals and medical clinics accessible in foreign
countries, the health care professionals may not be well trained in caring for people with MG.
Advanced treatment options may be unavailable. It would be prudent to research health care
facilities in advance to establish exactly what services are available, the location, and hours of
operation. Consider the following questions - How far away is the medical facility from where
you are staying? Do they have adequate medical facilities to manage MG and provide the care you
need should symptoms worsen? It may be helpful to contact the local Embassy or Consulate at
your destination. They may be able to offer contact information of medical providers who practice
Western style medicine and are familiar with MG and standard treatments.
Research websites such as the International and Overseas Medical Clinics or the International
Association for Medical Assistance for Travelers (IAMAT) are available for medical contact
information.
It is advised that you closely research your destination. Location, duration, reason for travel and
accommodation should be considered. It is important to remain realistic about what you can and
cannot do.
Is your travel for business purposes or pleasure? How will the trip challenge your abilities for
activity? Will it allow for rest periods? Travel plans should be realistic. Perhaps going for a
relaxing cruise is a better choice than an excursion requiring more physical exertion. Traveling to
exotic areas away from medical facilities or areas that require certain immunizations may not be
possible. How long do you intend to be gone? Will this interfere with regular treatments for MG?
By asking in-depth questions in advance you will have a better chance for a safe and enjoyable
travel.
5. MG and Pregnancy: Things to Consider- Robert L. Ruff, MD, PhD
Overall, the pregnancy risks are higher in women who have MG, but with careful
monitoring, women with MG can successfully birth healthy children. It is imperative that
women with MG who are considering getting pregnant discuss pregnancy with the care
giver treating their MG. Below are some questions that women often ask in this situation.
Will My Baby Inherit My MG?
Most patients with MG have acquired autoimmune MG; the type of disease associated
with antibodies to acetylcholine receptors (AChR-Abs) or to a protein called muscle
specific kinase (MuSK). Women who have acquired autoimmune MG will not pass on
MG to their children. Only women with congenital (manifesting at or soon after birth)
forms of MG, which are rare and which manifest in infancy or childhood, risk passing
MG to their children. Please talk to the physician who treats your MG about what type of
MG you have.
What Kind of Complications Can Occur during Delivery?
Having stated that women who have acquired MG will not pass on their MG to their
children, we need to discuss transient neonatal MG (TNMG). TNMG describes a
condition in which the baby has transient weakness due to being exposed to AChR-Abs
from the mother. A large study showed that TNMG occurred in about 4% of deliveries to
women with MG (Jackson, 2003). Provided that TNMG is anticipated, it can be treated
and the baby will not have any lasting problems. Due to the possibility of TNMG,
pregnancies of women with MG should be considered as high risk pregnancies. They
should be carefully monitored. Deliveries should be done in a hospital setting. The
hospital should have staff who have experience with MG. Again, discuss the issues of
following the pregnancy and the site of delivery with the physician who treats your MG.
Other findings of the above mentioned study were that mothers with MG were more
likely to deliver in a university hospital and more likely to have a cesarean delivery.
Cesarean sections are likely more common in women with MG, due to concern that
women with MG are more likely to fatigue during labor. It is important to note that in the
findings of the study, there were no differences in the average birth weight, age at birth,
frequency of birth defects or stillborn rate of the newborns of MG mothers compared to
other births.
What Effects Does MG Have On Delivery?
The discussion of the study on pregnancy and MG (Jackson, 2003) indicated that the only
complication of pregnancy that was higher in women with MG was premature rupture of
the membranes holding the amniotic fluid. Women with MG were more likely to deliver
via cesarean section, perhaps as a precautionary measure. While women with MG can
successfully deliver babies vaginally, they are more likely to tire during a long labor,
which may explain why cesarean sections are more common for women with MG.
Will my baby be healthy?
Overall the risk of birth defects is not increased for women with MG and is comparable
to pregnancies of women without MG. A rare birth defect that has been linked to MG is
arthrogryposis, which refers to muscle weakness and joint deformities that are present at
birth. Women who have large amounts of a specific type of antibody that targets the
infantile form of the acetylcholine receptor are more likely to deliver babies with
arthrogryposis. The fortunate feature is that women who deliver babies with
arthrogryposis usually do not have clinical MG. The subset of antibodies that cause
arthrogryposis, do not cause symptoms in adults. Consequently, women who have MG
are not likely to have babies with arthrogryposis. Severe arthrogryposis can be
recognized by ultrasound prior to delivery.
One health concern that women with MG and their doctors must consider is transient
neonatal MG (TNMG). TNMG occurs when MG antibodies are transferred from the
mother to the baby and can be effectively addressed if anticipated. The baby will need
treatment, perhaps for several days to a week, until the MG antibodies from the mother
have been removed from the baby or spontaneously broken down. Babies who have had
TNMG have grown to be normal children.
How will my MG treatment complicate my ability to get pregnant?
Women need to consider several issues and have extensive discussion with their
physicians and other women who have been pregnant before they attempt pregnancy. As
pregnancy advances, women frequently feel fatigued. Fatigue can be more prominent in
women with MG. Treatment with anticholinesterase medications, such as pyridostigmine
(mestinon®), does not affect the ability of an individual to become pregnant nor is it
known to appreciably complicate a woman’s ability to carry a pregnancy. There is slight
risk of anticholinesterase medication triggering or enhancing uterine contractions. Many
people with MG are treated with medications that alter the immune system,
immunosuppressive agents. Immunosuppressive agents include glucocorticoids, such as
prednisone, azathiaprine, mofetil mofetate (CellCept®), cyclosporine and other agents. It
is essential if you are taking a medication or treatment to alter your immune system that
you discuss the risks associated with getting pregnant when using that treatment. In
general glucocorticoids can be continued during pregnancy.
How will pregnancy affect my MG?
About a third of women with MG will have a flare of their MG during the first trimester
of pregnancy. In general, MG symptoms, with the exception of general fatigue, tend to
decline during the second and third trimesters of pregnancy. As pregnancy advances,
breathing during sleep can be compromised in any pregnant woman. Because disorders of
sleep, particularly sleep apnea, are often under-recognized in people who have MG,
women contemplating pregnancy should discuss with their caregivers whether they
should have a sleep study to evaluate their breathing when asleep. The usual treatment
for sleep apnea, continuous positive airway pressure (CPAP), does not complicate
pregnancy.
Reference
Carlayne E. Jackson The effect of myasthenia gravis on pregnancy and the newborn. Neurology 2003;
61; 1459-1460 [The online version of this article, along with updated information and services, is located
on the World Wide Web at: http://www.neurology.org/cgi/content/full/61/10/1459
6. Genes Underlying Myasthenia Gravis: GWAS update- Daniel B. Drachman, MD
There is a great deal of evidence that genetic influences predispose individuals to
Myasthenia Gravis (MG), and play important roles in its clinical features. To analyze the
genes that are related to MG, a Genome Wide Association Study (GWAS) is being
conducted with support from MGFA. The ultimate goal of the study is to understand the
genetic factors underlying MG and be able to target the relevant genes to provide new
and effective treatments for MG.
This study involves analysis of a very large number of genes from more than 1,000 MG
patients. In collaboration with 14 MG centers throughout North America, we are
collecting DNA from saliva samples and clinical information (kept confidential) that
includes factors likely related to the individual’s genetic makeup, such as gender, age of
onset of MG symptoms, severity, association with other autoimmune diseases, family
history of MG or other autoimmune diseases, and response to treatments.
The collection of DNA and information began at the end of January 2010. We have
obtained more than 500 DNA specimens and related clinical information and have found
that about 6 percent of these patients have a family member who is also affected by MG.
26 percent of the patients have additional autoimmune disorders and 30 percent have a
family member with an autoimmune disorder. These numbers are far higher than
expected for the non-MG population, and support the idea that genetic factors are
involved.
When the DNA and clinical information collection is completed, the material will be
analyzed by collaborators at the National Institutes of Health, under the direction of Dr.
Bryan Traynor. They will analyze 700,000 genes from each patient’s DNA. The genetic
information will be processed by computers, using bioinformatic methods, to determine
which genes are associated with MG.
7. What does the M/SAB do?- Henry J. Kaminski, Chair of the M/SAB
The Medical/Scientific Advisory Board (M/SAB) works as an advisory committee to the
national board of the MGFA on issues of research and patient care. It consists of
physicians and scientists who are experts in MG. Throughout the last year, members of
the M/SAB have developed podcasts for patient education, established a research agenda
and worked to put into place the MGFA-American Academy of Neurology Foundation
Clinician-Scientist Development Award. This issue of the newsletter contains summaries
by M/SAB members, Linda Kusner and James Howard, of new and important research in
MG. The M/SAB research committee also recommended funding a genome wide
association study lead by Daniel Drachman, another M/SAB member. The study hopes to
discover genetic factors that may contribute to causing MG. All these initiatives were
approved by MGFA leadership in order to enhance services to patients and to the MG
research community. In the next year, the M/SAB members will continue their work to
enhance service to MGFA and all MG patients.
8. Development of a twin study for MG-Nicole Kerlero de Rosbo, PhD
Scientists with world-wide expertise in MG are carrying out research that should help
explain the relative contribution of the environment and the genetics to the development
of MG. Part of the research will involve the biological comparison between identical
twins, with one or both twins affected with MG. If you and your identical twin are willing
to participate in this project, please contact Nicole Kerlero de Rosbo, PhD at
[email protected]. MGFA and the M/SAB have agreed to support this
research. At present, we want to establish a list of willing participants whom we can
contact for further information and possible enrollment in the survey. Your personal
details will be kept confidential. In the future, we hope to contact you for additional
medical history and a 50 ml (3 and half tablespoons) blood sample. Myasthenia gravis is
a rare disease and this research can only be carried out with your help and active
participation. We thank you in advance for your interest in this important endeavor and
we look forward to hearing from as many patients as possible.
9. Research Update- Linda L. Kusner, PhD
In the late 1800s, the involvement of the thymus in myasthenia gravis was appreciated.
With this observation, numerous studies into the role of the cells that make up the thymus
have been completed and although some questions have been answered, many more have
taken their place. Dr. Ruolan Liu and colleagues from the Barrow Neurological Institute
in Phoenix, AZ, have begun to further examine the control of the specific cells in the
thymus. The generation of reactive T cells in lymphatic tissues initiates the production of
antibodies by the B cells. By the elimination of a specific regulating gene, Liu’s group
was able to observe remarkable changes in the immune response by the reduction in
reactive T cell and subsequent production of acetylcholine receptor antibody that leads to
autoimmunity.
Liu R, Hao J, Dayao CS, Shi FD, Campagnolo DI. Exp Neurol. 2009 Dec;220(2):366-73.
10. Myasthenia Gravis Remains a Grave Disease and a Costly One- Amer
Alshekhlee, MD Case Western Reserve University, Henry J. Kaminski, MD Saint
Louis University
We and colleagues at Case Western University performed a study of patients hospitalized
for myasthenia gravis. The methods used a nation-wide inpatient sample, which is a
database that includes hospital admissions from about 1,000 hospitals across the country,
representing about 20% of total US hospitals over 5 years. The study found the overall
mortality of hospitalized patients was about 2 percent and double that for myasthenic
crisis. All of us would like to reduce death from myasthenia gravis, but it is important to
appreciate that the patient group studied are the sickest individuals because they are in the
hospital. They often have other diseases like pneumonias or other infections or heart
disease that contribute to death. Also, other diseases like congestive heart failure, heart
attacks, and stroke are associated with higher rates of death in the hospital. The average
cost of hospitalization for MG patients was about $40,000. Using this number and
estimating the number of all hospitalized MG patients across the entire country, we can
make a calculation that the cost of myasthenia gravis hospitalizations in the United States
is $200 million per year. Also, please appreciate that this number does not include
outpatient visits, cost of medications, or lost income from not being able to work. It is
critical for our political leaders to learn the cost of MG patient care. With President
Obama’s initiative to improve health care and control its cost, a focus on this rare disease,
MG would lead to overall healthcare savings for the United States. When speaking to
legislators it is important to not only emphasize the personal human cost of MG, but also
to emphasize the financial impact.
11. The Benefits of Exercise for Folks with MG- Robert L. Ruff, MD, PhD, Suzanne S.
Ruff, Health Psychologist
There are many advantages of exercise for folks with MG. This article will detail some of
these benefits, quash some common myths and provide suggestions about pacing yourself
when exercising.
Myth busted – “Since weakness can be provoked by activity, exercise makes MG
worse.” Exercise does not worsen MG. What is true is that inactivity that may ensue
before MG is brought under control, will make it harder for an individual to be active. It
is true that folks with MG have fatigable weakness. MG treatments will usually reduce
the amount of exercise-induced fatigue caused by MG, but the person is left with fatigue
because that individual is deconditioned. Deconditioning affects the muscles and cardiopulmonary system. Inactivity converts of fatigue-resistant “red” muscle fibers to fatiguesensitive “white” muscle fibers and reduces the density of blood vessels in muscle. Some
treatments for MG, particularly glucocorticoid medications (steroids, prednisone for
example) heighten the effects of inactivity on muscle.
The cardiovascular and respiratory systems are also adversely affected by inactivity.
Inactivity compromises the ability of the heart to pump blood and the lungs to put oxygen
into the blood. Lack of exercise compromises muscle activity and the ability of the
cardio-pulmonary system to deliver nutrients and oxygen to tissues. It takes time to
regain conditioning. An exercise program should be started only after one has consulted a
physician.
Inactivity can lead to type II diabetes mellitus. In type II diabetes, elevated blood sugars
occur in a setting of initially high insulin levels. What happens is the tissues of the body
become resistant to the action of insulin. The insulin-resistantstate causes blood sugars to
be elevated. A major target for insulin action is skeletal muscle. Red muscle is sensitive
to insulin and readily takes up glucose to help keep blood sugars in an appropriate range.
White muscle is insensitive to insulin and contributes to an insulin-resistant state.
Glucocorticoid or prednisone-like medications can also lead to insulinresistance. Exercise
can combat the change in muscle composition that leads to insulin-resistance and also
combat the adverse effects of glucocorticoids on skeletal muscle without reducing the
ability of these medications to control MG.
Inactivity can also lead to obesity. Your weight is determined by a balance of how many
calories you consume and how much you burn. Inactivity reduces the number of calories
burned and can lead to boredom with eating becoming one of the few remaining
pleasures. Obesity will lead to insulinresistance and type II diabetes.
Inactivity will also worsen osteoarthritis – sometimes referred to as the arthritis due to
injury.
The importance of pacing for maintaining steady level of activity –Folks tend to try to
do too much on their “good” days and then to pay for that with loss of energy and
soreness for the next several days making those “bad” days. To some extent folks will
have “good” and “bad” days due to the day to day variability of conditions such as MG.
However, it is important to try to pace oneself to reduce the difference between “good”
and “bad” days. It is important to try to do pleasurable activities everyday. One may try
to get all of one’s necessary work done on a “good” day to the point that you may get
your work done, but you are too tired to do much the next several days. Being active for
only one day out of several will not improve your activity tolerance. A workable strategy
is to not overdo it on “good” days and do something pleasurable every day. Pleasurable
tasks distract one from the pain and fatigue associated with activity and increases your
activity tolerance. On “bad” days, try to space out what you need to do so that although it
takes longer to accomplish a specific task, the task is completed with a minimum of
discomfort and fatigue. Try to do some pleasurable things on “bad” days as the
pleasurable things will not seem to be so tiring or painful. Think of life as a distance race,
not a sprint. Accomplish things over time not just one day and be active every day. If you
work at being active every day, you will find that over time you can do more and feel
better.
12. For People with MG the Benefits from the New Swine Flu Vaccine Outweigh the
Possible Risks- Robert L, Ruff, MD, PhD
Recently, articles in the press and on the internet have raised concern about danger
associated with a vaccine for current version of Swine Flu. The major concern of the
vaccine that is being developed is that it will cause Guillain-Barre syndrome (GBS). In
the United States, GBS is a sporadic disease that causes diffuse weakness. GBS refers to
diseases that damage the covering of peripheral nerve (demyelinating form) or that
damages the nerve fibers and their coverings (axonal form). GBS is an autoimmune
disorder, that differs from MG by attacking peripheral nerves rather than the
neuromuscular junction and by usually occurring only once in a person’s life. Most cases
of GBS resolve with little or no permanent residual effects, but the weakness during the
acute illness can be very severe, sometimes requiring hospitalization and mechanical
support of breathing.
The current Swine Flu is caused by a H1/N1 influenza virus similar to the virus that 1976
Swine Flu vaccine targeted. The recent internet pieces suggest that the 1976 Swine Flu
vaccine caused GBS, therefore any vaccine against an H1/N1 virus may cause GBS. The
articles also make reference to secret documents that raise concern about the risk of GBS
from the current Swine Flu vaccine. The facts are that people who received the 1976
Swine Flu vaccine had little or no increased risk of developing GBS. The current Swine
Flu vaccine is being constructed so that it does not contain any components that would
put an individual at risk to develop GBS.
Given that people with MG are at greater risk of injury or death if they acquire the Swine
Flu or any other version of influenza and that the risk of complications from the new
Swine Flu vaccine is very small, it is advisable for people with MG to be vaccinated
against Swine Flu. As with any individual medical decision, you should consult your
general medical doctor and neurologist regarding treatment.
For the most current information regarding the symptoms of flu and H1N1 vaccination
see http://www.cdc.gov/h1n1flu/. Wash your hands frequently, cough into your elbow
and not your hand, and if you have symptoms of the flu contact your doctor and stay
home.
13. Genome-Wide Association Study (GWAS) in Myasthenia Gravis- Daniel
Drachman, MD
With the current knowledge of the human genome, and the technical advances in
analyzing alterations in genes, it is becoming possible to identify important changes that
previously could not be recognized in populations of individuals with specific diseases.
Although certain genetic factors have been identified by previously available methods,
such as Class II antigens, this probably represents just the tip of the iceberg.
In a sense, advances in genetics are similar to advances that have led to important
discoveries in astronomy. With the development of the optical telescope early in the 17th
century, Galileo was able to see and define far more stars, planets and galaxies than had
previously been visible with the naked eye. Now, as more sophisticated telescopes have
been developed, such as the radiotelescope and the Hubble telescope, a vast number of
celestial objects are newly recognized.
The basic abnormality in myasthenia gravis (MG) is an antibody-mediated autoimmune
attack against acetylcholine receptors (AChRs) at neuromuscular junctions, that results in
weakness and fatigue of muscles. Although more is known about the pathogenesis and
immunology of myasthenia gravis than about any other autoimmune disease, the cause of
MG is still unknown. There is abundant evidence that the thymus is involved in the
pathogenesis of MG.
There is excellent reason to believe that a wide variety of genetic factors predispose
individuals to developing MG, as well as possibly influence its manifestations and
severity. In addition, environmental factors play a further role. Undoubtedly, affected
individuals differ with respect to the contributions of the various genetic and
environmental factors involved.
Similarly, the development of amazingly powerful new techniques to identify alterations
in genes has revolutionized our ideas about the roles of genetic factors in diseases.
Current technology is available to analyze alterations in as many as 600,000 genes with a
single "chip." Studies using these methods have already shown changes in individuals
with two autoimmune diseases: rheumatoid arthritis and multiple sclerosis.
We are ready to move MG into the 21st century by applying these techniques to learn how
genetic alterations influence the susceptibility to MG, and the manifestations of the
disease. Of course, meaningful interpretation of the information derived from such vast
amounts of data requires DNA from large numbers of well characterized patients, as well
as sophisticated methods for statistical/mathematical methods of analysis. That is what a
collaborative group will do, with generous funding from MGFA. In collaboration with
the Laboratory of Neurogenetics at the National Institutes of Health, we will carry out a
Genome-Wide Association Study (GWAS) in about 1,000 patients with MG.
So why would we want to do this? Firstly, the advantage in knowing the inborn genetic
factors that can contribute to this disease is that we are likely to identify targets for much
more specific treatments than are currently available. Secondly, if the genetic background
of individual patients can be correlated with specifics of the disease, then individualized
treatments could be applicable. For example, we would like to know why some patients
respond to certain immunosuppressive drugs, while others do not. Finally, MG is, in a
sense, an "orphan" disease. Although not rare, it is less common than multiple sclerosis
or rheumatoid arthritis. Lessons learned from study of this extremely well characterized
disease are likely to lead to advances, not only in MG, but in other autoimmune disorders
as well.
14. Myasthenia Gravis and Vaccinations- Madeleine Batenjany, MSN, RN, ANP-C
Individuals with MG are at risk for the complications of infections or disease but MG
itself is not a reason to avoid vaccination. It is important to protect against certain viruses
or invading germs which can cause an exacerbation of MG. An individual may also be at
risk for complications of infections due to other health problems in addition to their MG.
Vaccines help an individual reduce their chance of getting an infectious disease. Some
examples include flu, pneumonia, tetanus, hepatitis A or B, etc…
Always discuss your vaccination needs with your physician. There can be some
restrictions to having certain vaccines or the timing of administration due to an
individual’s allergies, or use of immunosuppressive and immunomodulatory drugs such
as Prednisone, Imuran (azothiaprine), Cellcept (mycophenolate mofetil), Cyclosporine,
and IVIG.
The purpose of vaccination is to provide immunity against a specific organism(s) which
can cause a particular disease or in the case of influenza reduce the risk for the suspected
disease causing strains of flu for the season. We are born with an immune system to help
fight infection and diseases by invading bacteria and viruses. The body considers these as
foreign antigens and makes antibodies to fight them and help protect us from the disease
they can cause. When an individual is immunosuppressed or compromised, they are at
greater risk for infections and disease.
How Vaccines Work?
Vaccines contain antigens or parts of antigens which cause diseases. The antigens in
vaccines are either killed or made very weak. They are usually given by injection and are
strong enough for the body’s immune system to make antibodies against them. The cells
involved in making antibodies become “memory cells” and can remain for a long time or
may require a booster vaccine to help them produce more antibodies to prevent re –
infection of a specific disease.
Vaccines can be described as:
1. Live attenuated vaccines: The disease causing organism is weakened so it will not
cause a full blown disease. This is given to healthy individuals who can build antibodies
against the organism in order to avoid getting the disease. MG patients should not receive
this type of vaccine.
2. Inactivated vaccines: The disease causing organism is killed, and the body makes
antibodies against it.
3. Extracts of or detoxified toxins: A toxin which can cause the disease is inactivated
before it is given to the patient. An example is the tetanus vaccine. Individuals with MG
may receive an inactivated vaccine, but not a live attenuated vaccine. It is recommended
to receive a yearly flu vaccine. The pneumonia and tetanus vaccines are also
recommended when appropriate. Always check with your physician before receiving any
vaccinations and report any previous allergies to vaccines.
For more information about vaccinations refer to the following websites:
http://www.cdc.gov/vaccines/vac-gen/howvpd.htm
http://www.myasthenia.org
References:
cdc.gov/vaccines/vpd-vac/should-not vacc.htm
Myasthenia Gravis a Manual for the Health Care Provider. James F.
Howard., M.D., editor, 2009.
15. Moving MG Research Forward- Henry J. Kaminski, M.D.
Chairman, Department of Neurology & Psychiatry, Saint Louis University, Chair,
Medical/Scientific Advisory Board, MGFA
The Myasthenia Gravis Foundation of America (MGFA) works toward reshaping scarce
research funds to make every dollar count and, to that end, the MGFA Board and its
Medical/Scientific Advisory Board (M/SAB) is crafting a strategic plan for research
development. This is a work in progress, though, at this time we can provide some
insights. Ultimately, we have designed the research strategy to find a cure for MG, but it
is clear that goal is years away.
The executive committee of the M/SAB performed an analysis of the present state of MG
research, which was presented at last year’s annual MGFA meeting in Milwaukee. It
became clear that to do this right, the MG scientific community needed to get together
and develop a data driven research agenda. This is similar to what the National Institutes
of Health did for muscular dystrophy, organizing the leaders in the field to develop
focused work products, then hosting a conference to discuss developments and putting
together a robust document on what is important, what needs to be done and how to get
there. To accomplish our goals, we must have a concentrated amount of effort and time
by numerous busy scientists and health care providers. It is not something that the
executive committee could or should do alone. So the MGFA is working on ways to fund
a Research Summit to produce a rigorous plan to optimize research funds. However, the
MGFA appreciates research support must go on and has done so in two ways.
The MGFA and the M/SAB realize that the research strategy will require a means to train
the next generation of scientists. Fordecades MGFA has sponsored training fellowships
for young scientists. Now MGFA, with Rick Barohn’s leadership (past Chair of the
Medical Scientific Advisory Board), has entered into a partnership with the American
Academy of Neurology (AAN) to leverage support for the fellowships. The AAN is the
world’s largest professional society dedicated to advancement of neurology. The new
MGFA-AAN fellowship will be advertised across the country in a manner impossible for
the MGFA to have done alone. We therefore expect candidates of even higher caliber
applying in the future. Further, our fellows will be provided greater resources and funds
and will be targeted to junior scientists just beginning their academic appointments.
Support at this time is likely to launch a career dedicated to MG studies (as it did mine).
Given the NIH budget decline throughout the last 8 years and many universities strapped
for funds, we must assist in supporting the next generation of scientists who will discover
a career.
Dr. Dan Drachman submitted a proposal to perform a genome wide association study of
MG to the research committee. This study looks at the potential genetic causes that may
be associated with the development of MG. These types of studies have been very
successful in identifying genes involved in other diseases. The research committee
needed greater expertise to evaluate the proposal and sent the proposal to three experts in
the genetic field. Ultimately, as these studies are very costly, a revised proposal was
recommend for funding. The MGFA will provide funding contingent on Dr. Drachman
obtaining funds from two other sources.
16. Update on the construction of the MG-QOL15 and MG Composite- Ted M.
Burns, M.D
“Quality of life” (QOL) is obviously something that is important to our patients with
Myasthenia Gravis (MG) and it’s something that MG experts certainly want to maximize
when treating patients. However, it’s quite challenging to measure a patient’s QOL, both
in the outpatient setting and during any clinical trial. With that in mind, the research
sponsored by the MGFA recently derived a 15-item MG-specific QOL scale
(MGQOL15) from a larger 60-item QOL scale in order to offer a user-friendly
instrument, both in terms of time spent administering the instrument and time spent
analyzing the results. We were pleased to see how well it “performed” retrospectively in
the multicenter “Muscle Study Group” trial that assessed mycophenolate mofetil
treatment for MG. We are now assessing the reliability and validity (i.e. performance) of
this 15-item QOL evaluative measure prospectively at approximately 10 centers around
the world. We hope to have results on this study, sponsored by the MGFA, in late
summer 2009.
We have also developed a new instrument that measures the strength and function of
patients with MG. This scale, which we’re calling the “MG Composite” scale, was
recently constructed by selecting the best test items from three other widely-used MG
scales. The 10 items of our new scale were selected based on each test item’s
performance during two randomized, controlled trials that assessed the efficacy of
mycophenolate mofetil in MG. Notably, our items were selected by considering what we
think both patients and physicians find important. From the patient’s perspective, we
chose items that correlated well with our MGspecific QOL measure and that were
responsive and concordant with the patient’s assessment of treatment response. From the
physician’s perspective, we chose items that were responsive and concordant with the
physician’s assessment of treatment response. The physician’s perspective was also
important in choosing which functional domains warranted representation in this scale.
After the 10 items were chosen, we utilized the cumulative experience of 36 MG experts
from around the world (nine countries) with more than 600 cumulative years of
experience caring for patients with MG to “weight” the response options of the items. We
did this because it is almost certainly the case that some “functional domains” impaired
by MG (e.g. talking) carry more “weight” than others (e.g. eyelid strength) in terms of
meaningfulness. When we completed this weighting we asked MG experts to consider
“quality of life, health risk, prognosis, estimated item validity and reliability and any
other factors you think are important” when assigning scores. We are now assessing the
reliability and validity (i.e. performance) of this weighted MG Composite evaluative
measure prospectively at approximately 10 centers from around the world. Results from
this MGFA sponsored study should be available by the end of summer 2009.
17. Protein from tick saliva studied for potential myasthenia gravis treatment
Looking for a better treatment for the autoimmune disease myasthenia gravis, researchers
have found that a protein in tick saliva shows promise in limiting the severity of the
disease in an animal model in a study published in the Annals of Neurology.
“This disease can leave patients weak and on breathing machines, and conventional
treatments can be toxic,” said Henry Kaminski, M.D., chair of the department of
neurology and psychiatry at Saint Louis University, chair of the Medical/Scientific
Advisory Board for the Myasthenia Gravis Foundation of America, and one of the
nation’s leading experts on myasthenia gravis. “There is a real need for better treatments.
This study is a step in that direction. All the work has been done in animals and we are
far away from human studies at present.”
Myasthenia gravis is a highly debilitating, chronic neuromuscular disorder that affects
about 400 to 600 per 1 million people, and roughly 1,100 to 1,700 people in the St. Louis
area. Symptoms include weakness in the arms and legs, chronic muscle fatigue, difficulty
breathing, difficulty chewing and swallowing, slurred speech, droopy eyelids and blurred
or double vision.
While drugs like prednisone, a corticosteroid, can be effective in treating the disorder,
they also can carry a host of severe side effects, including pronounced weight gain,
osteoporosis, glaucoma and diabetes.
Other treatments, intravenous immunoglobulin and plasmapheresis, which involve blood
plasma, are expensive and can have rare but serious side-effects such as infections, heart
attacks and stroke.
Doctors believe that myasthenia gravis is caused by an overreaction of the complement
system, a component of the immune system that specifically defends against parasites,
bacteria and other pathogens. Antibodies block nerve receptors at the neuromuscular
junction, the place where nerves connect with muscles, and then activate complement
which prevents muscle contraction from occurring, causing weakness.
To impede the complement system’s misplaced response, researchers hope a new class of
drugs, called complement inhibitors, may stop the body’s defense system from attacking
itself.
Other researchers discovered that rEV576, a protein found in tick saliva, works as a
complement inhibitor, allowing ticks to avoiding setting off an immune response in their
human host.
SLU researchers in collaboration with Varleigh Limited tested the protein on two groups
of rats with mild and severe models of myasthenia gravis. The health of rats that were
given the complement inhibitor rEV576 improved, with reduced weakness and weight
loss.
Researchers hope rEV576 could have therapeutic value in human myasthenia gravis.
And, because ticks apply themselves to people without causing a reaction, researchers are
optimistic that rEV576 will not cause allergic reactions or other negative side effects.
“Complement inhibitors are a completely new class of drugs,” said Kaminski. “This one
will probably prove to be superior to what we’ve seen. Since complement is activated in
many diseases such as Alzheimer’s, stroke and rheumatoid arthritis, our studies may be
important for other diseases.”
18. Ocular Manifestations of MG- Robert L. Ruff, MD, PhD
Clinical Characteristics
Double vision (diplopia) and eyelid drooping (ptosis) are the most common symptoms of
MG. Diplopia occurs when primarily MG affects a one eye, limiting eye movement and
leading to double vision when the eye is turned in the direction controlled by a weak
muscle. Ptosis occurs when orbicularis oculi (the muscle responsible for eyelid elevation)
is affected on one or both sides, leading to eyelid drooping. These symptoms often
worsen during the day.
In 75% of MG cases, the initial manifestation is in the eye. Within 2 years, 80% of
patients with ocular onset of MG will progress to involve other muscle groups, thereby
developing generalized MG. The other 20% of patients continue to have purely ocular
MG. If MG is confined to the ocular muscles for more than 3 years, there is a 94%
likelihood that it will not generalize.
The ocular manifestations of MG are characteristically variable in course, with the
frequency of diplopia and ptosis affected by environmental, emotional and physical
factors. Some people develop fixed or constant weakness of some extraocular muscles
due to eye muscle scarring. When fixed impairment develops, the eye symptoms will not
respond to treatments that had previously been effective such as using pyridostigmine
(Mestinon) or similar drugs.
Treatments of Ocular MG
While not life threatening, ocular manifestations of MG can compromise an individual’s
satisfaction with life. There are medications that should be avoided by people with MG
because they can worsen the disease. For ocular manifestation, people must avoid eye
drops or ointments that contain aminoglycoside antibiotics including: amikacin,
gentamicin, kanamycin, neomycin, netilmicin, paromomycin, streptomycin and
tobramycin) or beta-blockers. Eye drops with betablockers are used to treat glaucoma and
include: Betimol, Betoptic S, Betagan, Ocupress, Optipranolol, and Timoptic.
People with mild-to-moderate ocular myasthenia are usually treated initially with oral
anticholinesterase agents, such as Pyridostigmine (Mestinon). The anticholinergic agents
can be very effective for ptosis, but may not be as useful for diplopia. Diplopia occurs
when the eye muscles responsible for moving the eye are being affected to differently so
that one is working better than the other and the eyes are not aligned. When
anticholinergic medications are used, the medication may improve the function of the
weaker muscle, but partial improvement will still result in diplopia.
Non-medication treatment for ptosis includes eyelid tape or eye lid crutches that hold the
eyelids open. Be aware that the devices will reduce the ability to close the eye lids.
People often need to use moisturizing eye drops and eye protection to prevent injury to
the cornea. Mechanical treatments for diplopia are limited. One technique is to work with
an eye care professional to design glasses that obscure the vision of the “bad” eye (to
cover the part of the eyeglass lens associated with the weak eye so the vision from that
eye is obscured when a person looks in the direction that produces dipolopia). People
may also respond to prism corrections applied to their eyeglasses, particularly when the
diplopia is fixed and produces only horizontal or vertical double vision.
For people with generalized MG who do not have a good response to
cholinesterasetreatment alone, immunosuppressive therapy is usually started and the
initial agent of choice is often prednisone (a glucocorticoid type of steroid).
Glucocorticoid treatment can produce bone softening (osteoporosis), muscle wasting and
skin fragility with an increased tendency for bruising. Steroid treatment is often
combined with other immunosuppressive agents to enable the dose of steroid to be
reduced to as low as possible. Steroid therapy is controversial for people with purely
ocular MG.
In my experience, the surgical treatment for ptosis can be very effective. Eye lid surgery
is particular beneficial for reducing ptosis in older people who have redundant eye lids.
Surgical correction of diplopia works best for people who have a stable, fixed, nonfluctuating diplopia. Surgery to correct diplopia or ptosis should be done by an
ophthalmologist who has experience treating people with MG.
19. Ask the Doctor- Robert Ruff, MD, PhD
Are there any precautions I should take before visiting the dentist or while at the
dentist?
In general, MG does not lead to dental disease. However, having MG may compromise
your ability to swallow and, if you’re taking Mestinon®, you may produce more saliva.
Jaw weakness may lead to jaw misalignment.
If your condition is unstable, consultation with your neurologist is recommended prior to
dental treatment in order to ascertain the extent of neuromuscular weakness and
frequency of neuromuscular exacerbations or crises, and to discuss the need for medical
management to optimize the treatment outcome.
The dentist should know that you have MG and what medications you’re taking. This
information enables the dentist to adjust dental treatment so you have the best experience
possible. Regardless of your condition, it’s helpful to give your dentist the MGFA
brochure on dental treatment. The dental treatment brochure can be found at http://www.
myasthenia.org/docs/MGFA_Brochure_DentalTreatment.pdf. You may also request this
information from the national office at 1-800-541-5454.
I need to have oral surgery. What types of anesthetics are safe for people with MG?
Patients with MG are excessively sensitive to neuromuscular blocking agents. These
agents are sometimes used to produce muscle weakness, and their use can lead to
prolonged post-anesthesia weakness. The neuromuscular blocking agents include
succinylcholine and medicines related to curare. There is also potential exaggerated
weakness associated with local anesthetics; procaine should be avoided.
The table below indicates medications that may produce exaggerated weakness.
Relatively contraindicated
Local Anesthetics
Procaine*
Use with caution
Safe
Lidocaine*
Mepivacaine*
Bupivacaine*
Prilocaine*
Analgesics
Morphine & derivatives§
Narcotics§
Acetaminophen
NSAIDS
Aspirin
Benzodiazepines§
Hypnotics§
Barbiturates§
N2O/O2 sedation
Metronidazole*
Tetracycline*
Vancomycin*
Penicillin & derivatives
Anxiolytics/Sedatives/Hypnotics
Antibiotics
Erythromycin*
Gentamicin*
Neomycin*
Polymyxin B*
Bacitracin*
Clindamycin*
Other drugs
Corticosteroids‡
*
Key: = drugs which may acutely potentiate myasthenic weakness
§
= use with caution in patients with respiratory difficulty or depression
20. Ask the doctor- Robert Ruff, MD, PhD, Elena Luchanok, MD, Henry J. Kaminski,
MD
Are there special considerations MG patients should make in the summer?
Dr. Ruff answers:
There are some precautions that folks with MG should take so that summertime heat does
not lead to worsening of manifestations of MG. One of the features of MG is that raising
body temperature can increase weakness. Therefore, it is essential for folks with MG to
remain cool. Do not stay in the sun for prolonged periods of time. Sun block will protect
you from sunburn, but not from overheating.
Another concern in the summer is dehydration. Some of the medications used to treat the
symptoms of MG— specifically pyridostigmine (Mestinon®) and related drugs—
enhance the risk of dehydration. Medical/Scientific Advisory Board member Dr. Henry
Kaminski described some of the risks of dehydration
(www.netwellness.org/question.cfm/24231.htm, or call the MGFA national office at 1800-541-5454 for more information). It is important to maintain adequate intake of water
to compensate for water loss caused by sweating and other causes.
A third concern is that the warm weather can entice people to become more active—
which is good, provided that one is adequately conditioned. Stanley Way, a former
member of the MGFA Board of Directors, provided a personal description of the
importance of conditioning to prevent muscle strains (http://pages.
prodigy.net/stanley.way/myasthenia/stanstor.htm). One key point is that it is important
not to overdo it when the weather gets warm in the summer.
Does mental health affect MG or cause exacerbations?
Drs. Luchanok and Kaminski answer:
MG patients often experience more severe symptoms during times of emotional distress
or depressed mood, but there is no data that unequivocally indicates that psychological
stress affects the onset or the severity of MG. Emotional stresses (like a death in the
family, divorce, or other trauma) will make the quality of any human being’s life worse,
and that can lead to the feeling, that a disease is affecting them more. It is important to
appreciate that all humans suffer emotional traumas, but that does not necessarily mean
that a disease is directly caused by them.
Does MG affect mental health in MG patients and quality of life?
Drs. Luchanok and Kaminski answer:
There is no question that MG affects the quality of life, but studies thus far indicate that
most MG patients adjust well to the disease, with generally good levels of mental health.
Some old studies suggested that MG patients might have higher rates of anxiety and
depression—especially those with severe MG. However, more recent and well-designed
studies showed that the frequency of anxiety and depression inMG patients is similar to
people without MG. Further, how severe the symptoms of MG become does not predict
how severe depression and anxiety may be. (In other words, even patients with mild
weakness may have significant anxiety.) The only exception is MG patients with
difficulty of swallowing (or speech) and droopiness of eyelid, who more frequently have
anxiety disorders.
Does MG affect a patient’s cognition and cause a mental fatigue?
Drs. Luchanok and Kaminski answer:
Slightly more than one half of MG patients complain of memory loss that they believe is
associated with their disease. Although there is no evidence that MG affects the central
nervous system, several studies suggest that memory function is affected in people with
MG. MG patients may have subtle difficulties with learning of new information, but it
does not affect patients’ attention and retention of already learned information. Such
problems, in our opinion, relate to coping with the symptoms of MG. It is important to
note that the problems of MG patients are much different than those with dementia (such
as Alzheimer’s Disease), who have difficulties remembering previously learned
information. Many MG patients report experiencing feelings of mental fatigue in addition
to the symptoms of physical fatigue, and there is a strong correlation between mental
fatigue and cognitive problems in MG patients. The exact reasons for mental fatigue are
likely related to coping with chronic disease and medication side effects.
Which factors support mental health in MG patients?
Drs. Luchanok and Kaminski answer:
Feelings of control over one’s physical condition, managing the uncertainty and
intrusiveness inherent in the illness, and having adequate social support are important
factors of mental health in MG patients. It is very important to learn to exert control over
circumstances that are indeed controllable—and cope with those situations that are not—
to improve the quality of life. Further, learning to actively manage perceptions of
uncertainty may also result in greater quality of life. Social support is also very important,
as it helps to cope with the disease and promotes mental wellbeing and preserves quality
of life. Studies show that many MG patients cope well with their disease and experience a
good quality of life.
Please note: If you believe that you have a mental health problem, please talk to your
doctor.
21. Ask the doctor- Robert Ruff, MD, PhD, Member, MGFA Medical/Scientific
Advisory Board
Is it OK for MG patients to get a flu shot?
Concerns about vaccinations and MG sometimes arise out of fears that vaccinations will
trigger attacks of MG or worsen its course. There is no evidence to indicate that receiving
yearly flu shots will worsen the course of MG. Another concern is that people who are
taking medications that compromise their immune systems (such as steroids, prednisone,
or prednisolone) will contract the disease they are being vaccinated against. However, the
agents in the injected influenza vaccinations are inactive and therefore cannot produce
disease.
Influenza season begins in the fall and extends through the winter. Influenza causes
substantial illness and can be fatal. People with chronic diseases (such as MG) and people
who have difficulty breathing (a possible symptom of MG) are especially susceptible to
harm caused by influenza.
The influenza vaccine is the most effective way to protect against the disease and to
prevent the severe complications of influenza. Each year, the vaccine is made up of
inactivated components of the different strains of influenza virus that are likely to be
causing disease that flu season. Some people do not want to get influenza vaccinations
because, in the past, they received a vaccination and they had a low-grade fever and felt
ill for a few days. Hence, some people do not want to receive a flu shot because they
believe that the “flu shot gave them the flu.” However, the low-grade fever is part of the
body’s response to the vaccination that enables the body to defend against influenza
infection. A person who develops a mild reaction to the flu shot would likely have a
much more severe illness if he or she contracted influenza. Vaccination can also prevent
family members infecting each other with influenza.
Please note: As with all medications, please consult your physician before getting a flu
shot!
There are some people who should not receive yearly influenza shots. People who have
allergic sensitivity to eggs or who have had severe reactions to prior influenza shots
should not receive flu shots.
There is an alternative form of influenza vaccination that uses live attenuated influenza
virus that is administered as a nasal spray. The live virus nasal spray form of influenza
vaccine should not be used in people with MG.
For additional information on the influenza, pneumonia, and tetanus shots, go to
www.myasthenia.org.