Gravis Survival Guide
your health l Finding
Neurologist l Support
local support l Human
Energy Conservation l Personal
Disturbance l Eating
Difficulties l Therapies
Medication Consideration l Drugs
which may aggravate Myasthenia Gravis
and the work place l Conclusion
guide is intended to help myasthenic to fully understand and
cope with their disease process. The patient should be willing to
become an active participant in achieving and maintaining a good
quality of life, in conjunction with his/her family, his physician and
other health professional.
The goal of this guide is to allow the myasthenic, through a better
understanding of himself/herself, the health care system and other
important factors, to participate in discussions with his health care
team and make truly informed decisions about available treatment
One should note that not all myasthenics will experience severe
symptoms and encounter emergency procedures. However, one needs to be
informed of the possibilities and the intervention procedures.
Patient-Directed Health Management Outline
Safeguarding your health
1) Accept responsibility for your health; educate yourself with
the available information about MG. Resources for pamphlets, articles,
and current research information include:
a. Myasthenia Gravis Foundation,
b. Your local chapter:
c. Medical journals
d. Personal accounts and articles
2) Carry a personal written information sheet containing the
a. Your medical diagnosis(es).
b. Symptoms you experience when your MG worsens - state your normal
c. All prescribed medications (for MG and other illnesses), and
medication allergies. Also list any over-the-counter medications
you take regularly.
d. If you take Myestin -list the symptoms of Myestin overdose.
e. List drugs or treatments which worsen your MG.
f. List therapies and/or medications that proved helpful in the
past under similar
g. List the phone numbers of your private MD and neurologist and two
Finding a neurologist
1. Find a neurologist who is knowledgeable about MG.
2. Talk with your family doctor~ other myasthenics and friends about
to them. Your type of health insurance or lack of insurance may also
physician you choose.
3. On the first visit, take a complete set of your medical
records. Have the doctor
place a copy of your records in your file.
4. If you have a difficult time remembering what the doctor tells you:
a) Bring a family member with you;
b) Write it down;
c) Ask him to write it down;
d) Ask to tape record your discussion.
5. Your medical care plan: a. Help develop a treatment plan choosing
which incorporate your abilities and goals. b. Discuss a personal
treatment plan if your condition should worsen. c. Give your
neurologist the telephone number of your family doctor. d. If you
have respiratory involvement, request an incentive spirometer for home breathing
evaluation. With a spirometer a patient can give an objective
their breathing capacity. Please note: measure your breathing capacity
maximum effort. (Also ask for instructions!) e. Meet your doctor as
necessary to discuss changes in your care plan as your condition
6. Family Physician
a) Have a Physician's MG handbook sent to your doctor to provide him
with a guide to
National Myasthenia Gravis Foundation Office)
b) Discuss your treatment plan with your doctor.
c) Discuss the difficulties you face when your MG worsens; include
based on past experiences.
d) Provide family M.D. with the telephone number of your neurologist.
Support of family and friends
1. Educate family and friends about Myasthenia Gravis.
a) Obtain literature for family members about MG from the National or
local chapter of the Myasthenia Gravis Foundation.
b) Invite family and friends to MG support group gatherings.
2. Develop a distress phone signal for use if you are unable to talk,
i.e. 2 rings, then han
up. Use phone receiver clicks to answer yes or no questions; one click
for yes and
two clicks for no. Write down some ''key" questions to ask; such
as, "Are you having
trouble breathing?'' or "Do you choke when you try to
3. Take literature from the MG Foundation to the hospital with you.
You can also get Free
copy of "Coping with Myasthenia Gravis" from the office of
VHB Pharmaceuticals Pvt
4. If necessary, attend group therapy sessions with others dealing
with the realities of
living with a chronic illness to ventilate feelings, and share coping
ways to solve common problems.
Additional local resources for your support
1. Support groups and local auxiliaries.
2. Organize an "MG emotional support wheel" of people to
call in your area during
3. Individual or group therapy sessions if needed.
. Human Energy Conservation
Tips l Shopping Tips
These general suggestions for human energy conservation may apply
to the work place or home and to men, women and children.
Don't stand when you can sit.
· Schedule regular rest periods during each day.
· Reorganize daily tasks and reschedule some 3 to 4 times a week to
allow for adequate
rest each day.
· Delegate tasks to other family members or keep a servant.
· Plan all activities and eliminate extra steps, assemble all the
· Move frequently used devices or objects to low, easily accessible
shelves for your
To ease difficulty getting up from a sitting position try leg
extenders to elevate chairs.
· Use power tools, and electrical appliances when possible to
conserve energy, i.e.,
electric mixer, electric screwdriver.
· Use walking aids if necessary for stabilization and support.
Install grab bars in your
home, or use a cane, walker or wheelchair as needed.
· Try a shoulder pad or intercom phone to completely free your hands
when talking on
· Avoid hot and cold weather extremes; they exaggerate weakness.
· Avoid aerosol pesticides and cleaners, since they may trigger or
(Many pesticides contain neuromuscular paralyzing agents and may
the MG patient.)
· Avoid excessive alcoholic drinks, tonic water (contains quinine)
· Avoid any medications or activities that you know make you weaker.
· Avoid stressful situations
When preparing foods chopping - dicing, etc., use a food
· Look for various kitchen gadgets and aids in catalogs to help you.
· Transfer heavier bulk items, such as sugar and flour, into smaller
containers easier to
lift and handle.
Shop at peak medication times; avoid shopping during peak store or
· Shop by yourself only when you need a few items, saving big
shopping trips for other
family members; or shop with a friend or family member who can assist
· Shop by telephone or mail when possible.
· Obtain a handicapped parking sticker if necessary.
lV.Personal Hygiene and Grooming Helps
Allow ample time to do grooming in "'phases", with rest
periods in between; use electric appliances to conserve energy, i.e.
· Place a stool in the bathroom to sit on while shaving or applying
make-up. Prop your
elbows on the counter top if necessary.
· Take short showers or baths using warm, not hot water.
· Install grab bars in the shower or next to the commode if needed.
Visual Disturbances (Blurred or Double Vision)
If double vision is a problem, an eye patch may be helpful while
reading or watching TV. Alternate the eye patch from one eye to the
other to avoid eye strain.
· Have your eyes checked to make sure you do not also need glasses.
· Rest for 30 minutes with your eyes closed before going out. Also
take along an eye
patch if you develop double vision.
· Ptosis - eyelid crutches, tape eyelids open.
Grind meats to make them easier to swallow
· Between meals with cold beverages; hot foods tend to increase
muscle weakness and
· Try semi-solid foods. They may be easier to handle than solids or
liquids, (i.e. milk
shakes, yoghurt, pudding or milk-kheer).
· Avoid foods that crumble and may be aspirated, (i.e. toast, cake,
and potato chips.)
· Enlist the help of a registered dietitian if you need help in meal
· If you take steroids, avoid salty foods and notify your physician
of sudden weight gain
(may indicate fluid retention) or gradual clouding or narrowing of
vision (may be due to
the development of cataracts or glaucoma.)
· Keep nutritious snacks handy. Try milk shakes, Diluted fruit juice
or pudding for
lV. Current Therapies: making Informed Decisions
Any combination of therapies may be employed in the treatment of
Myasthenia Gravis. There is no "standard" treatment plan for
all myasthenics. No two patients' courses are the same; therapies
which work for one patient may not help another. Choosing which
therapies to use should be the decision of your "team": you,
your family and your physician.
Some important considerations when making your choice may be: your
current condition and level of ability/disability; effect of therapy
on your ability to work; effect of therapy on your ability to carry
out your daily activities; loss of income if extended absence from
work is necessary; side effects of the therapy; expected change of
life-style as a result of the therapy; and the cosmetic effects of
certain therapies (specifically thymectomy and prednisone therapy).
Factors which are very important to one individual may be
insignificant to another. Carefully evaluate all the available
information - because the impact of these factors (plus others) will
greatly affect your positive self image, your acceptance and ability
to cope with your illness, and ultimately, your journey toward
wellness. Your choices of therapy should follow a discussion with your
doctor and family about the advantages and disadvantages of each
medical or surgical treatment offered, plus thorough consideration of
the factors listed.
Current therapies for MG include:
1. Anticholinesterase therapy - pyridostigmine bromide (Myestin);
2. Prednisone therapy - daily therapy and alternate-day therapy
3. Immunosuppressant therapy - azathioprine (Azoprin);
6. Other helpful therapies - atropine; pro-banthine; ephedrine
A brief discussion of each therapy follows. Dosages are not listed as
they are very individualized and must be carefully adjusted to
adequately control your symptoms. Obtain more detailed information on
all medications from your doctor and pharmacist before starting the
Anticholinesterase therapy prevents the breakdown of the
neurotransmitter acetylcholine, allowing more acetycholine to
accumulate. With more acetycholine, there is more control of voluntary
functions such as eye movements, limited strength, swallowing and
Pyridostigmine bromide (Myestin) is the most common drug used
in the treatment of MG. These medications increase muscle strength by
blocking the enzyme which breaks down acetylcholine - a chemical
substance (neuro-transmitter) necessary to transmit nerve impulses to
the muscle tissue. An increase in muscle strength is usually
noticeable within 20 to 40 minutes after taking the medication.
Weakness returns as the drug wears off in approximately 3 to 4 hours.
cramps, diarrhea, increased perspiration, increased salivation, muscle
twitching, palpitations, increased urinary frequency.
Instructions: Medication is taken in the prescribed dosage every 3 to
4 hours, before meals or with a snack. The medication must be taken at
regular intervals to maintain muscle strength throughout the day. A
"brittle myasthenic" may be adequately medicated during one
3 to 4 hour period and over-dosed with the same dose in the next 3 to
4 hour period. Medication dosage may require frequent adjustment
according to your response to the drug and your hourly/daily activity
level. When making Myestin adjustments do not alter the dose more than
1/2 tablet (30 mg.) at a time. Myestin extended-release tablets act
for 6 to 12 hours and are best when taken at bedtime. This allows for
comfortable, uninterrupted sleep and reasonable strength in the
use with high dose anticholinergics (atropine), hydrozyzine (Vistaril)
may decrease the effects of Myestin . Warning-If increasing shortness
of breath or difficulty swallowing occurs within 20 to 40 minutes
after a Myestin dose, these are symptoms of overdose! Call your
physician or go to his office or the hospital immediately. Myestin
extended-release is not recommended for daytime use because of the
unpredictable release and variation in myasthenic symptoms.
Prednisone acts in part as an immunosuppressant.
"Immune" refers to the immune system. The immune system
protects you against foreign bacteria, viruses, etc. In some
illnesses, the immune system produces antibodies which become
overactive and cause undesirable effects. Prednisone suppresses the
production of antibodies. This can make it slightly harder for you to
fight off infection, but also stabilizes the immune system if it is
Prednisone, a synthetic glucosteroid, is the steroid of choice in the
treatment of Myasthenia Gravis. It has both anti-inflammatory and
immunosuppressant properties. It often proves helpful in a wide
variety of other autoimmune diseases including rheumatoid arthritis
and systemic lupus erythematosus. Several options are available when
starting steroid therapy, daily or alternate-day therapy. Daily
therapy is usually started when the patient's condition is critical or
otherwise unstable, and quick relief of symptoms is desired. Once the
patient is stable, a gradual change over to alternate-day therapy may
be attempted. When patients begin alternate-day therapy, it takes
longer to feel the positive effect of the drug, weeks to months.
related to dose, frequency and condition of the patient. Generally,
the higher the dosage, and the more often you take the drug, the more
prone to side effects you become. However, alternate-day therapy
produces fewer side effects than daily steroid use. Also, the longer
you take steroid therapy, the more apt you are to develop these side
effects. Gastrointestinal nausea, vomiting, increased appetite,
gastric irritation, peptic ulcer. Generalized skin thinning, acne,
increased sweating, increased hair growth, facial roundness, easy
bruising, delayed skin healing, insomnia, nervousness, irritability,
headache, mood changes, high blood pressure, osteoporosis, increased
susceptibility to diabetes, menstrual irregularities, and lowered
resistance to infection.
the medication with meals may decrease stomach upset; however some
physicians recommend you take steroids on an empty stomach. Avoid
taking with antacids; antacids decrease the absorption of prednisone
from the stomach. Take in the morning, around 6 a.m., to correspond
with the body's normal release of steroids from the adrenal glands.
Prednisone causes the body to lose potassium, so eat potassium-rich
foods (bananas, orange juice, citrus fruits, and melons). Restrict
use may cause cataracts or glaucoma; notify your doctor if your vision
becomes gradually impaired. Severe hypokalemia (low potassium) can
occur with simultaneous use of diuretics ("water pills").
Simultaneous use with other drugs which cause stomach upset may
increase gastric discomfort. Prednisone interferes with the
effectiveness of oral anticoagulants. Simultaneous use with
antidiabetic agents may require higher doses of the antidiabetic
drugs. Do not stop medication abruptly; it must be slowly tapered off
over a lengthy period of time under the close supervision of your
Since MG is a disorder of the immune system, treatments that
suppress the immune system have been used in MG with some success.
Because an MG patient has an overactive immune system, the goal of
their therapy is to reduce a myasthenic's symptoms by suppressing the
overactive immune system.
Azathioprine (Imuran) may be chosen when use of an anticholinesterase
or prednisone therapy is not effective. Often it is given in
conjunction with plasmapheresis. The effect of this drug is not
immediately felt, unlike the dramatic improvement following a Myestin
dose. There may be slow, gradual, improvement over a 3 to 12 month
white blood cell count, anemia, low platelet count and bleeding. Also
nausea, oral lesions, and liver toxicity.
vaccine vaccinations are contraindicated. Frequent blood counts should
therapy is started with less frequent blood counts for the duration of
therapy. Periodic liver function tests should also be performed.
used in patients who fail to respond to other available therapies. It
is commonly used as a "chemotherapy" agent in cancer
treatment. It is not one of the "first line" drugs used to
treat MG because of its harsh side effects and potent
and vomiting; mouth ulcers; colon hemorrhage; low white blood cell,
red blood cell or platelet counts; interruption of menses or sperm
production; hair loss; lung fibrosis; bladder hemorrhage.
use with steroids will increase immunosuppressant activity.
Simultaneous use with barbiturates may increase drug toxicity. Certain
types of cancers, especially urinary and bladder cancers, have been
known to develop with the use of this drug.
Cyclosporine, a potent immunosuppressive agent, is currently being
researched as a possible new drug for the treatment of MG. Some
notable side effects include nausea, vomiting, hypertension and kidney
toxicity. Although it is felt to be a promising new drug, the risks
and side effects are not yet known. Additional information will become
available as research and clinical trials progress.
Although the role of the thymus gland in Myasthenia Gravis is not
fully understood, published 1983 study findings found as high as 85%
of patients who underwent thymectomy showed clinical improvement. The
decision whether or not to have this surgery should be made on an
Plasmapheresis is a short-term treatment in which several liters
of blood are removed, spun in a centrifuge, and the red blood cells
are returned in artificial plasma (aluminum and saline solution).
During plasma-exchange the amount of antibodies located in the blood
Plasmapheresis is generally reserved for patients who fail to respond
to other therapies or for those who need an acute temporary boost. The
patient undergoes a series of plasma exchanges. Temporary relief of
symptoms may occur after 7 to 8 exchanges. This short-term treatment
is sometimes used to strengthen a patient in preparation for a
thymectomy. Prednisone or azathioprine (Imuran) are commonly given to
patients undergoing plasmapheresis. Immune human serum globulin (gamma
globulin) injection may also be given during this therapy to restore
valuable serum antibodies removed by the plasmapheresis.
Low dose atropine is sometimes helpful to relieve the cramping and
diarrhea often caused by Myestin. Propantheline bromide (ProBanthine),
a synthetic drug similar in action to atropine, may also be helpful in
treating gastrointestinal discomfort. Caution must be taken not to
take too much atropine since it antagonizes the effects of the
anticholinesterase drugs and may result in weakness.
Ephedrine is sometimes used with anticholinesterase therapy. The drug
gives a "boost" in muscle strength in some myasthenics.
Possible side effects include. headache, high blood pressure,
nervousness, palpitations and insomnia.
General Medication Considerations
Know your medication allergies and keep this record on your
written information sheet.
· If you are very weak in the morning, keep one dose of medication
and water at your
bedside to take when you awaken.
· Use a watch with a beeper alarm to remind you to take your next
dose reset after each
· Use a dosage record chart (Provided with Myestin) to keep a track
of your dosage
· If swallowing is not a problems take medications with food to
decrease stomach upset
· If swallowing is a problem, you may crush tablets and take with
· Keep several doses of your medication in your car, and your work
place, as well as
your wallet or purse.
· Do not take new medications, especially
"over-the-counter" medications without
asking your doctor first.
· For sinus and allergy sufferers, there is a new antihistamine which
is safe for
myasthenics (does not exaggerate weakness or cause drowsiness). It is
(Seldane) 60 mg. tablets. If you occasionally need an antihistamine,
ask your doctor
about this drug.
Drugs which may aggravate Myasthenia Gravis
(Webmaster Note: This is not a complete list and new drugs have
been found to aggravate weakness since the publication of this
pamphlet. Consult with your physician).
Heart medications - quinidine and propranolol, procainamide .
· Rheumatoid arthritis and gout medication - Colchicine, d-penicillamine
· Antidepressant medications - amitriptyline
· Antihistamines - diphenhydramine (Benadryl), plus others. (May be
tolerated in very low
· Antibiotics - Gentamicin, Neomycin, Kanamycin, erythromycin,
· Narcotic medications - pain relievers like Morphine.
· Sedatives - Barbiturates
· Tranquilizers - Atarax, Valium, ("nerve pills"). (If
used, the dose should be
25-50% of the normal dose).
This is not intended to be a complete list of all the drugs that
affect MG. So many new drugs are approved each year that it is
impossible to predict what effect their use will have on the
myasthenic. Be particularly cautious about drug interactions when
medications for more than one medical problem are prescribed.
Periodically sit down with your neurologist and family physician and
review all your medications, prescribed and over-the-counter. Keep a
medication journal and note medications which aggravate your MG. Keep
your doctors up-to-date with your "medications to avoid"
list. Add these jmedications to your medical information sheet next to
your medication allergies.
Disability and the Work Place
Individuals with Myasthenia Gravis who have significant physical
limitations or visual impairment may find it necessary to
"creatively" alter their job schedule in order to continue
working. For those who enjoy work, the threat of losing your job can a
be devastating blow to your self-esteem and confidence. For those who
want or need to continue working, consider working part-time, flexible
work hours, or light duty assignments if available.
People with ocular Myasthenia Gravis should tap resources available to
the visually impaired. Severe ocular Myasthenia Gravis may be regarded
as functional blindness and retraining for job skills not requiring
sight may offer new job avenues.
Depending on your abilities and limitations, many other resources may
be available to meet your needs. If you want to work, do not hesitate
to explore all possible pathways back into the work place.
It is the intent of the VHB Pharmaceuticals Pvt Ltd that every
myasthenic be well informed and have current available information. By
being well informed the myasthenic patient will be better able to
understand MG. the management of MG, and actively participate in his
or her own wellness.
This pamphlet, of course, is designed as merely a guide. As with all
such materials, the reader is cautioned to consult with his/her
physician prior to reaching any conclusions or taking any advice from
this or any other periodical.
All information is for educational purposes only. Contact your
physician to make medical decisions