Pain: Part
of the disease
Pain Management & Drug Therapy
Patient selfcare
Alternative medicine
Paralysis, Ventilator treatment
& Tracheostomy
Communication is vital!
Psychological care of GBS patients
Immune-therapy: Treatments
targetting the antibodies
- The Pros and
Cons of PE and IVIg
- Plasmapheresis
(PE)
- IntraVenous
Immunoglobulin (IVIg)
- Immunoadsorption
(Imad)
Other treatments & care
Further reading
Before we delve into the various treatments of Guillain-Barré
syndrome (GBS), it must be stressed that what the patient requires
most of all is to be kept calm and reassured that most GBS patients
recover, despite any minor setbacks that may occur before recovery.
The syndrome is very unpredictable in its early
stages. Patients are usually hospitalised in intensive care units
for observation, as soon as the diagnosis has been made. This may
cause undue anxiety, and patients should be reassured that this
is just a precautionary measure.
Symptoms that may occur are irregular heart beat
or blood pressure, as well as sudden interruptions in the patients
ability to breathe. In order to be able to predict such changes,
the patient's breathing, heart rhythm and blood pressure are measured
at short intervals. Should any changes be observed, these readings
provide a background against which the changes can be interpreted
and correct treatments begun.
If it is determined that there is no danger of such
interruptions to the patient's vital functions, the patient may
be discharged. Further treatment involves the patient returning
on an out-patient basis.
It is not clear yet whether immunotherapy is necessary
for patients who are able to walk during the second week of illness
(mild GBS). However, the presence of residual signs in patients
with mild disease may be a factor taken into account when evaluating
individual cases. Patients with mild GBS are under observation until
approximately the eighth day to ensure that the illness does not
progress.
Treatment begins as soon as the diagnosis is verified.
Its aim is to reduce symptoms, offer immunotherapy to attempt to
shorten the duration of the disease, and maintain the body's muscles.
There is no cure for GBS, and recovery sets in of its own accord.
The following sections contain advice and descriptions
of treatment, of use to them with mild, moderate and severe GBS.
Families and friends will find tips on how they can provide support
and be of use, and how to work with their healthcare professionals
in the battle against GBS.
Pain: Part of the disease
As the syndrome progresses and the paralysis spreads, the patient
may experience pain from the muscles being paralysed, as well as
from incautious movement, uncomfortable lying positions, pressure,
etc.
In the introductory phase, the pain is often described
as cramps, aches or knifelike, and can resemble the pain resulting
from a kidney stone. Patients may also describe them as a burning,
tingling, shooting pain, numbness, throbbing or aching sensation,
or "like frostbite" or "walking on a bed of coals."
In the recovery phase, the character of the pain changes and it
is now experienced most often in the feet and sometimes in the
hands. The pain can be burning or knifelike, or be a form of hypersensitivity,
where even bedlinen against the patient's skin can cause pain.
The pain is now caused by the process of nerve healing, during
which the nerves may transmit confused signals to the brain. The
pain is increased by exercise and lifting of heavy objects, and
can therefore interfere with physiotherapy.
An excellent article on the types of pain the patient experiences
during the different phases of the disease, as well as advice
on how they may be reduced, can be found under 'Links'.
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Pain Management & Drug Therapy
GBS patients experience so much pain that their family and hospital
personnel should avoid increasing the pain through not being careful
enough. It is very important to make sure that paralysed patients
are comfortable. They should be moved frequently, but carefully, to
avoid undue pain, pins and needles, bedsores, blood clots, pneumonia,
etc. Efforts should also be made to investigate if some of the pain
can be reduced, and comfort increased, by the use of comfortable beds,
air or water mattresses, a rack that keeps bedclothes elevated over
a particularly painful body area, massage, hot or cold tub baths,
acupuncture and physiotherapy.
All the patients joints should be exercised, several
times daily, to avoid joint pain and muscle atrophy. Exercise keeps
the muscles strong and flexible, and shorten the duration of physiotherapy
required during recovery. Patients may require a painkiller before
physiotherapy sessions begin. It should be remembered that patients
who cannot communicate will find it impossible to tell others about
any pain and discomfort they experience.
Physiotherapy and hydrotherapy reduce stiffness in
limbs and extremities, and discomfort from the paralysis.
Hydro therapy is fantastic. The patient floats, with his or her weight
supported. The water provides graded resistance against which to exercise
- fast movements make exercise harder, slower exercise causes more
gentle the resistance. Hydrotherapy does not suit all patients, some
find the heat uncomfortable.
The litterature mentions that several patients experience
great comfort from a battery-operated 'transcutaneous stimulator',
that is held against the painful body area. The apparatus transmits
a very weak electrical impulse to the skin and the underlying nerves,
and thus reduces pain.
Your doctor is the best source of information on the
drug treatment choices available to you.
Neuropathic pain is generally treated with painkillers, muscle relaxants,
antidepressants, antispasmodics as well as arthritis medication, depending
on the type of pain the patient experiences. This does not mean that
the patient is depressive, arthritic, or risks convulsions! These
medicaments have been proven effective on pain caused by GBS, in a
way that differs and is much more effective than that of the usual
painkillers. Treatment may alleviate some, but not all, symptoms.
Note that the beneficial effects of these medications may not be apparent
for several weeks. Side effects often resolve with time, but should
be mentioned to your health provider.
Trials run to check the effects of corticosteroids
(such as predisolone, etc.) on symptoms of GBS indicate that they
have no effect. These medications are used in the treatment of the
CIDP and Miller Fisher syndrome subtypes of GBS.
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Patient selfcare
Apart from pain, GBS patients experience many discomforts, some
of which may be solved with a little patience and creativity.
GBS patients who experience weakness and loss of balance find that
ordinary chores suddenly become impossible to do. They cannot dress
themselves, walk without help, they are afraid of stumbling over something
they cannot feel, and require assistance to do normal chores. The
patient should be encouraged to use his or her muscles as much as
possible, as this can reduce the pain and influence both the course
and duration of the disease, as well as the degree of recovery, favourably.
Physical activity such as walking can enhance the patients quality
of life as well as improve circulation. It will also reduce stress
and take the patients mind off the health problems he or she is experiencing.
A walking stick, cane, braces, walker, wheelchair
or other walking aid may help such patients to retain or improve their
mobility or ability to use areas of the body affected by nerve damage.
An ankle-foot-orthotic (AFO) is usually prescribed by a physical therapist
and is used to prevent foot drop. It is a plastic or metal strip that
fits along the back of the leg and goes down under the foot. It is
secured by a band at the top of the foot and sometimes another at
the ankle. Being fairly stiff, it supports the foot and prevents it
from 'dropping'. AFOs are worn inside the shoe, while many braces
are worn outside the shoe. The patient puts on a sock, puts the AFO
into the shoe, and then slides the socked foot into the shoe.
AFOs stabilise the ankle and compensate for
foot-drop by preventing the toes catching on edges of carpets, steps
or curbs. As the patient improves these can be discarded.
As GBS often affects the feet, taking good care of
them may relieve symptoms. Using sensible shoes protects the feet
and reduces the risk of slipping and falling. Avoid tight-fitting
shoes and socks as they can increase pain and tingling. Comfortable,
soft-soled, well-padded, loose-fitting shoes and loose, cotton socks
are recommended instead. Buy custom-made shoes, to make sure they
fit correctly for maximum comfort. To relieve pressure on hypersensitive
feet, many patients walk only short distances, avoid standing for
long periods, and periodically soak their feet in ice water to reduce
burning pain. Massaging feet and hands to improve circulation may
also offer some relief from pain. The patient's shoes should be checked
frequently, to ensure that there are no small pebbles or areas that
chafe, as these could lead to wounds. Examine the feet (and hands,
if affected) daily for wounds and signs of infection. A podiatrist
can teach the patient to protect insensitive feet from trauma and
infections, such as those related to badly-fitting footwear or inadequate
hygiene. The use of compression stockings reduces
the risk of blood clots, while the use of socks in bed helps keep
the patient's feet warm.
Ramps and other aids should be installed in the homes
of patients with motor problems to keep them safe and allow them to
exercise as much as possible. Lack of coordination and reduced feeling
may increase the risk of the patient coming to harm, e.g. by falling
over obstacles he cannot feel. Rugs and other small objects that they
could trip over should be removed. Rails may be installed next to
ones bathtub.
Appliances that can be operated by persons with reduced
strength may be a great help. So could appliances designed for easier
operation, such as electrical toothbrushes, telephones with a headset,
appliances with push-buttons instead of press-buttons, etc. A brace
that keeps the wrist and fingers in a neutral position may help in
cases where the wrist and finger extensors are weak.
Patients who experience sensory abnormalities should
be protected from potential danger such as from too hot baths, while
leaving a night-light on helps prevent them crashing into furniture
and hurting themselves. The patient should also be examined physically,
for tender spots and wounds that would otherwise not be discovered,
especially on pressure areas such as elbows and knees.
Some of the patients may experience temporary difficulty
swallowing, loss of appetite, difficulty chewing, and rapid loss of
weight as a result of all these factors. They may also suffer from
fluid-deficiency and malnutrition.
Changing the pattern of meals, from few large meals to several smaller
meals, may help. Offering the patient food rich in fibre can help
constipation, while thick soups instead of thin fluids may reduce
drooling or swallowing problems.
Apart from the practical problems experienced by the
patient and his or her family, the patient also experiences periods
of depression and psychological lows. Your hospital, physician or
local GBS support group may be able to recommend psychologists or
advisers skilled in treating these issues.
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Alternative medicine
Many patients report finding relief from their symptoms in acupuncture,
reflexology of the feet, hands or ears, massage therapy, chiropractic
care, meditation, and movement therapies such as yoga and tai chi.
Other alternative therapies mentioned in connection with neuropathy
include magnets, herbs, and vitamins.
Little scientific information is available on
the efficacy of most of these approaches. Acupuncture, however, is
a traditional Chinese medical technique that is used in many conventional
hospitals and physician's offices. It may provide relief from the
pain of peripheral neuropathy.
Taking B-complex vitamins could be beneficial, since
vitamin deficiency is one of the risk factors for neuropathy - ask
your physician whether vitamins might help you.
If you plan to take herbal or other supplements,
please consult your physician before you begin, as they may cause
harmful interactions with other medications.
Check 'Links' for information on alternative medicine & GBS.
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Paralysis, ventilator treatment
and tracheostomy
The increasing muscular paralysis can temporarily affect the chest
muscles, causing shortness of breath in up to 30% of GBS patients.
This necessitates hospitalisation, with the use of a ventilator as
required. The ventilator assists the patient's respiration (breathing)
by stabilising and making it easier for the patient to breath, for
as long as required. Read more about how a ventilator works under
'Links'.
The paralysis can also affect the heart rhythm and blood pressure,
which is why these patients are usually hooked to a cardiac monitor.
The ventilator is connected to the patient's windpipe
by means of a small tube introduced into the nose or mouth of the
patient, who has been given a local anasthetic prior to the process.
This tube is usually used for about 1-2 weeks. Should the patient
require the ventilator after this time, a local anaesthetic is administered
to the patient and a tracheostomy is performed.
A small slit is made in the patient's throat and a little tube is
inserted into the windpipe. This is connected to the ventilator. This
is usually more comfortable for the patient than the tube running
through the nose, and it allows for the use of the ventilator for
longer periods. However, the patient cannot speak with the tube in
his or her throat. A ventilator is usually necessary for a few weeks
only. Patients may also require periodical mechanical suction of their
lungs to keep them free of phlegm, or medication that keeps the lungs
working optimally, prevents parts of the lungs from collapsing and
prevents pneumonia.
While the patient is hooked up to the ventilator,
he or she is unable to speak and may be unable to communicate by other
means. He or she may therefore experience feelings of isolation, frustration,
anger, shock, depression, anxiety or fear of surviving but with permanent
damage. It is important to support the patient is expressing these
feelings, and frequent reassurance must be a priority.
When the patient no longer requires the ventilator,
the tube is removed, after which the slit heals in a few days. The
patient can usually speak again after a few days, although the muscles
used to speak with (lips, mouth, tongue and vocal cords) may be so
weak that pronunciation may be unclear, and the patient may require
the assistance of a speech therapist to learn to speak clearly again.
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Communication is vital!
Effective communication must be established between the patient
and the physicians, medical personnel, family, etc. Being assigned
a certain member of the hospital personnel can be helpful when queries
arise. Studies show that patients often misunderstand the meaning
of commonplace medical terms that doctors tend to use when informing
the patient about his or her disease. Trying to describe the disease
and the treatment in his or her own words has shown to be very important,
as this reveals any misunderstandings that can be corrected immediately.
GBS patients must be allowed influence and involvement
in decisions regarding their care and treatment. In extreme cases,
where patients are totally paralysed and cannot communicate by any
means, they can still hear, and will therefore appreciate being cheered
up, as well as being told what is taking place and why.
Where speech is impossible, other ways of communication
must be sought. Some patients may be able to write their way out of
the problem or to use a Lightwriter
(resembles a large calculator with alphabets instead of numbers),
while to others, blinking their eyes, tapping, pointing or twitching
replies to questions may be a solution. Check out this example of
a spelling
chart.
Boards or stacks of differently-colored cards with
standard questions may work in cases where there is very little movement.
For example, a red card could contain questions about pain
and other acute needs:
- Pain medication
- Thirst
- Anxiety
- Pain in the feet/legs
- Cramps in the legs
- Pins and needles in the arms
- Mucus in the throat
- etc.
A green card could be used to indicate other
needs such as:
- Feet must be raised/lowered
- Need to be turned
- Feeling cold/hot
- Pillows need to be adjusted
- Lamp hurting the eyes
- Turn TV/radio on or off
The patient indicates which card is required and
the nurse reads out each question until she receives an indication
of which one is correct.
A large dose of humour and patience is very necessary for both patient
and the person attempting to communicate with him or her!
Your hospital or support group may also have access
to an invention that has helped many patients: a mouthpiece used to
tap Morse signals, connected to a computer that transforms the signals
into alphabet. Creativity and patience are absolute requisites, together
with sense of humour!
Patients who have extremely limited movement could
perhaps use the alphabet-method. A certain movement, e.g. looking
down indicates yes, looking up indicates no, while other movements
indicate groups of alphabets. For example, looking up = vowel, looking
to the left = alphabet B-K, looking to the right = alphabet from L-Z.
If the nurse then says the alphabets, the patient reacts to the correct
one by looking down.
The method is painfully slow and frustrating, so please experiment
with other methods as well - it is critical that the patient can communicate,
so whatever works is fine.
It is difficult for paralysed patients to call hospital
personnel when required. Several patients report being able to make
a sound that was loud enough to be heard at some distance from their
rooms. You may find further inspiration under 'Links'.
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Psychological care of GBS patients
Besides physically difficult periods, GBS patients also
usually experience psychically difficult periods. Being paralysed
without warning and constantly having to depend on people around one
can be intolerable.
GBS patients and their families need to be informed very clearly,
early in the course of the disease, that the majority of the patients
recover. If the family and friends understand this, and the course
of the disease, they will be optimistic in their dealings with the
patient, and influence him or her too. They, as well as health personnel,
should therefore never be pessimistic about the disease, or cry, in
the presence of the patient.
However, the patient may experience the efforts of
family and health personnel to cheer him or her up as being insensitive
and over-optimistic. The usual prognosis is recovery, but the patient
may experience the disease in a completely different way, and thus
disbelieve their attempts at convincing him or her of it. Their optimism
should be transmitted to the patient, while allowing him or her the
occasional bout of doubt and anger. The patient should also be allowed
to communicate his or her feelings of frustration, pain, anxiety,
isolation and low self-esteem. He or she may need to grieve over the
loss of independance, career, hopes, dreams, however temporary the
loss may be. Counseling and medication to help deal with these feelings
may be necessary, for a while, for both patient and family.
As the course of the disease varies from patient to
patient, each case history differs and yet has many points of similarity.
Many patients enjoy reading about other patients' experiences in similar
situations. Please refer to "Case Histories".
Patients also feel very isolated, and therefore enjoy
frequent visits, especially if the visitors participate actively in
relating to the patient. Female patients particularly enjoy having
their hair brushed, make-up applied, and fingernails painted. Visitors
should make efforts to keep the patient up-to-date on the activities
of family and friends, to avoid the patient feeling isolated from
a normal life and to prepare him or her for recovery and re-introduction
into society again. A number of patients also experience great comfort
when visited by members of support groups, who have recovered from
GBS.
A clock, placed so that it can be seen clearly, will
be enjoyed also by paralysed patients. So will radio and TV sets,
or even a window, to keep the patient abreast of the passing of hours,
days and seasons. Good books, a walkman, audio tapes will all be enjoyed,
but only if the patient can operate the controls!
Pain management, understanding the disease and treatment of the symptoms
are all necessary to enhance the patient's quality of life.
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Immune-therapy: Treatments
targetting the antibodies
Guillain-Barré syndrome patients are offered treatments
that target the patient's antibodies. Treatment is offered during
the attack to try to reduce the severity of the attack. These treatments
involve either removal of the patient's antibodies or the addition
of antibodies from other people, or a combination of both. The first
method is called plasmapheresis or plasma exchange (PE), and the second
is intravenous immunglobulin infusion (IVIg). Both treatments generally
reduce the severity of the disease, the duration of the plateau phase
and the risk of permanent damage. They are described below.
In order to be of use, PE and IVIg need to be done
in the first month or so. They cannot correct the damage that has
already occured and that may require a long healing period. What they
do is to reduce the severity of the remainder of the attack.
The treatments all work to limit the amount of destroyed
tissue. If the body cannot produce tissue that is destroyed, the results
are permanent physical damage. Hence, reducing the destruction reduces
the potential damage. The time required by the body to regenerate
damaged tissue is also reduced, and so both measures result in faster
recovery. Treatment should therefore begin as soon as the diagnosis
is made.
No one knows how to stop the immune system from attacking itself.
So the alternative is used: The severity of the attack is reduced,
by removing or blocking the part of the immune system that influences
the nerves (antibodies) and thus limiting the damage inflicted upon
the tissue.
However, the body continually produces antibodies, and when their
number increases to the point where the attack is resumed, treatment
is repeated, until the patient begins to recover and antibodies are
no longer produced. Frequency of the treatment is determined by the
physician, who evaluates the patient's condition.
Both the patient and his or her family should have
realistic expectations as to the effect of the treatments, using IVIg
and/or PE. Dramatic changes for the better do not occur, except in
very seldom cases.
Recovery begins of its own accord (spontaneously),
which makes it impossible to predict how many sessions of the treatment
the patient may require.
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The pros and cons of PE and
IVIg
The two treatments, PE and IVIg, are equally effective. The choice
of treatment for individual patients is undertaken by the patient's
physician, based on the patient's condition, and sometimes on the
hospital at which the patient is being treated.
Not all hospitals have the equipment and personnel required to offer
PE, besides which the method is difficult to administer to elderly
patients and those with narrow veins. IVIg is more convenient to administer
and receive, and has therefore often replaced PE as the preferred
treatment. It can be administered through a smaller vein in an arm
or hand, rather than one of the major arteries as for PE, can be administered
at most hospitals and can be prepared for use in 1-2 hours. Also,
IVIg does not remove useful particles in the blood, can be cheaper
to administer, and most patients experience few to no problems.
In certain cases, a combination of treatments is offered,
with PE being followed by IVIg, on the theory that the patient's harmful
antibodies are first removed, and new antibodies introduced to block
any remaining antibodies from attacking the immune system. This method
has not been proved more effective than either of the two methods
administered alone.
Both IVIg and PE are very expensive. The benefits
include the patient living at home with family, and being treated
on an ambulatory basis, freeing up hospital capacity for more needy
patients.
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Plasmapheresis (PE)
Plasmapheresis, or Plasma Exchange (PE) is a mechanical process that
involves the exchange of plasma and removal of disease-causing antibodies
from the patients blood. It appears to reduce both the duration and
severity of the disease.
The method resembles dialysis slightly, in that the patients blood
is pumped through a machine, and the blood factors that harm the body
are removed.
PE is proven more beneficial when started within seven days after
disease onset rather than later, but is still beneficial in patients
treated up to 30 days after disease onset.
The GBS patient is connected to a machine, that slowly
removes small amounts of blood from the body, treats it and returns
it to the body. Red and white blood corpuscles are separated from
the liquid part of the blood, the plasma, that contains the unwanted
antibodies. The plasma with antibodies is discarded, fresh plasma
is added to the blood corpuscles and returned to the body. The fresh
GBS-antibody-free plasma is taken from the blood of blood donors,
or other fluids are used. The procedure is repeated over 4-6 days
during the first week of the disease, with 250 ml plasma/kg body weight
used as replacement, after which sufficient antibodies have been removed.
The subsequent treatments usually take a day, once every 4-8 weeks.
The treatment can vary a little, depending on the
hospital. In some hospitals, a large syringe may be used to remove
blood, after which it is treated and then returned to the body, by
syringe.
This is a description of how the treatment is carried
out at Rigshospital, Denmark: To enable access to the patient's circulatory
system, a catheter must be inserted into a large blood vessel that
runs toward the heart. Before it can be inserted, blood tests are
taken to check that the patient's blood has the required ability to
clot.
The
patient is given a local anaesthetic as well as painkillers, if required,
½-1 hour before the procedure. The catheter is usually inserted
by an anaesthesiologist. A small cut is made, and the catheter is
inserted under the collarbone or at the throat. In rare cases, it
is inserted in the groin. Finally, the catheter is sewn to the skin
and covered with a bandage. The procedure can cause discomfort and
some pain, and the catheter may be felt when the patient moves.
After the procedure, x-rays are taken of the chest area, to ensure
that the catheter is placed correctly.
Complications arising from the insertion
of the catheter are rare. The lung may be damaged during the procedure,
and may contract. Bleeding may be seen from the artery that runs close
to the blood vessel the catheter is inserted into. The catheter can
also influence the heart rhythm, if it is placed too close to the
heart; the catheter is then pulled out slightly.
The two-hour long treatment takes place
in the dialysis department. A nurse sits by the patient during the
entire treatment, which is pain-free. The patient may sit or lie down
and read or knit during the treatment, while the machine stands by
the side of the bed. The two ends of the catheter outside the body
(see figure) are connected to the tubes of the machine, and the blood
passes through the machine, a little at a time, and is cleaned. Plasma,
which is the thin colourless fluid in the blood, is filtered off together
with the antibodies it contains. It is replaced by fluids containing
salts and proteins.
A few patients may feel nauseous if they
eat during, or immediately after the treatment, which is why eating
a snack before is recommended.
During and for some hours after the treatment, there may a risk of
falling blood pressure, specially when the patient gets up. The patient
may also feel fatigue, dizziness and nausea. Therefore, he or she
is encouraged to stay in bed for about an hour after the treatment,
and should be accompanied if visiting the bathroom.
The catheter remains in the patient in-between
treatments, and must be maintained well. It does not interfere with
the patient's movements. Baths may be taken, if the patient remembers
to change the bandage after the bath. Infection may occur in the skin
around the catheter, and to prevent this, the bandage should sit firmly,
be clean and dry at all times, and should be changed at least every
second day.
Source: Rigshospitalets Neurocenter (Dec. 2000).
Any unusual symptoms during or after
the procedure should be immediately reported. They may be caused by
medications or plasma or even cleaning chemicals used during the process.
Trivial symptoms may indicate the onset of a serious complication.
Symptoms include dizziness, faintness, blurred vision, coldness, sweating,
cramps, bleeding, tingling, metallic taste in the mouth, itching,
wheezing, rash, etc.
The process removes both benign as well as the autoimmune
antibodies that cause damage. The benign antibodies protect the body
against infection, and their absence may make certain patients more
susceptible to infections. The benign antibodies are regenerated over
time.
The process may also remove medication in the blood, and may require
dosage adjustments after careful observation.
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Intravenous Immunglobulin (IVIg)
High-dosage IntraVenous Immunglobulin
therapy consists of the slow injection of high doses of donor antibodies,
also called immunglobulins, into the patients blood. The antibodies
are collected from the blood of thousands of blood donors, who are
previously screened for HIV and Hepatitis.
Giving the patient high doses of other antibodies outnumbers the patient's
own destructive antibodies and reduces the harm they can cause because
some of the donor antibodies inactivate these destructive antibodies,
thus slowing down the syndrome. The activity of the white blood corpuscles
that produce the undesirable antibodies is also slowed down. This
results in the severity of the attack on the patient's immune system
being reduced for a while.
IVIg treatment can differ slightly between hospitals.
Generally, the plasma is dissolved in a liquid and administered as
an IV-drop through the patient's wrist. The starting dosage is 400
mg/kg body weight, i.e. 20-35g over a 12-hour period, for five consecutive
days. The amount is adjusted later on.
The effect of the treatment is first felt after a few days, and for
the following 4-12 weeks. As for PE, the treatment has to be repeated
regularly, depending on the patient's condition and production of
antibodies, until recovery sets in. Frequency of treatment depends
on the patient's condition and the physician.
The method can have side-effects. Patients may experience
headaches, stiffness of the neck, nausea, dizziness, vomiting, chills,
fever, low blood-pressure and arrythmia for upto 48 hours after being
treated, or in the initial stages of the treatment. These symptoms
disappear after a few hours or days. If they occur during the treatment,
they can be minimised by reducing the speed of administration.
The treatment can also trigger allergic reactions, most often as eczema
on the palms of the hands. Serious complications, seldomly seen in
otherwise healthy patients, include kidney damage and the formation
of blood clots.
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Immunadsorption (Imad)
Immunadsorption resembles plasmapheresis (PE) a great deal: Both
catheter insertion and treatment are similar in many ways. Imad is
administered in the hospital's neurological department and takes about
4-5 hours, during which the blood is treated by two machines. Only
the immunoglobulins are removed and discarded, whereas both immunoglobulins
and plasma are discarded in PE. Imad can therefore be repeated more
often than PE.
During the treatment, the patient's calcium levels
may be affected temporarily. This feels like a slight sensation of
tingling, numbness, or pins and needles, especially in the tips of
the fingers and the lips. To counter this, the patient is given calcium
during the treatment, and the calcium levels in the blood are monitored
at the end of the treatment.
The patient's blood-pressure may fall during, or in the hours following
treatment, specially when he or she stands up. The patient may also
experience tiredness, dizziness and nausea. Eating a snack before
the treatment helps stop this from happening, as well as resting for
an hour after the treatment.
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Other treatments and care
At the hospital, the patient is monitored with great care, to
reduce arrythmia and blood-pressure changes, as well as complications
such as pneumonia, bedsores, blood clots, infections, etc. Slight
fever can be caused either by the patient's inability to regulate
body temperature, or by infections in their initial phases. Bedridden
patients' muscles shrink, their weight plummets and their legs may
swell. The use of compression stockings or raising the patient's legs
reduces the swelling. Medicine that prevents the formation of blood
clots may also be administered.
Patients experiencing difficulty swallowing are given fluids, nourishment
and medicine through an IV-drop or a nasal tube. A flexible plastic
tube is inserted through the nose and then through the throat to the
stomach. The patient gets used to the tube, and being fed through
it.
If the patient experiences problems urinating, a catheter
may be necessary. The patient's bladder can temporarily lose it's
ability to squeeze and empty itself. This can sometimes be compensated
for by pressing on the bladder while urinating. About 20% of GBS patients
develop urinary infections that require treatment with antibiotics.
Constipation is also to be expected, due to the weakened muscles of
the intestines, the change in diet, and the lack of motion due to
being bed-ridden. The patient may be given medicaments that increase
the activity of the intestines and stop the constipation.
When recovery begins, usually spontaneously, and the
patient's body begins to function again, he or she must begin physiotherapy
to actively train the muscles. Inactive muscles lose their strength
very quickly. Without activity, muscles lose 15 percent of their strength
in just one week. The patient can then sit up, and gradually stand
up and walk again, first with support and later unaided. In most cases,
the syndrome reverses itself, with paralysis disappearing along the
same route it had ascended.
Please check 'Links' and 'Research & Trials' for
information on experimental treatments under development. 'Case Histories'
contains global experiences af GBS treatments.
Top
Further reading
- Treatment
AAN
Offers New Guidelines for Treatment of Guillain-Barre Syndrome
[free registration required]
The American Academy of Neurology (AAN) presents new guidelines for
the treatment of Guillain-Barré syndrome.
Therapeutic
Plasma Exchange - The whys and hows. 
Management
of Inflammatory Neuropathies
Focus on Pain - information and tips
Withdrawal
from medication - how to do it without hurting yourself
Hemolytic
anemia associated with intravenous immunoglobulin (1998)
Partnership
for Prescription Assistance (USA only) 
PPA helps qualifying patients who lack prescription coverage get the
medicines they need through the public or private program that's right
for them. Many will get them free or nearly free.
Potential New Therapy for Patients with IVIG-Dependent CIDP 
Interferon treatment shows promise.
New
Insights Into the Mechanisms of IVIg-Mediated Recovery in GBS
How IVIg works, a technical discussion. 
Towards
Understanding the Molecular Basis of Poor Recovery in GBS
A technical discussion. 
Treatment
Experience in Patients with Anti-MAG Neuropathy 
- Alternative/complimentary strategies
Why
doctors aren't asking and you aren't telling 
Patients want their doctors advice on alternatives. Doctors
want to know which alternative therapies their patients are using.
But there is a lack of communication on the subject. Patients who
dont confide in their doctors could be setting themselves up
for complications. They could be putting themselves at risk for no
reason, because doctors arent as negative about alternatives
as patients seem to think..
Any
Science Behind the Hype of 'Natural' Dietary Supplements? A report
on dietary supplements that may be good or bad for you.
What
is ayurvedic medicine? A thorough explanation.
- Severe GBS
Severe
Guillain-Barre Syndrome Associated With Campylobacter jejuni Infection
With Failure to Respond to Plasmapheresis and Immunoglobulin [free
registration required]
Description of a case.
- Case histories
English and foreign-language
case histories that inspire and support patients and their families.
Patients describe the course of their illness, how they handled the
syndrome, how their families worked together with health personnel
to ensure an optimal treatment. They also describe recovery and life
post-GBS.
Top
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Copyright 2001-2007 S. Marcussen. All rights reserved.
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or misinterpretations. These pages should be used for information
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