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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 targeting 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 Guillain-Barré patients recover, despite any
minor setbacks that may occur before recovery.
The syndrome is very unpredictable in its early stages.
Patients, even them with mild Guillain-Barré , 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 Guillain-Barré 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 Guillain-Barré , 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
Guillain-Barré . 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
Guillain-Barré .
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
Guillain-Barré 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 or 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 Guillain-Barré , 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 Prednisolone, etc.) on symptoms of Guillain-Barré
indicate that they have no effect. These medications are used
in the treatment of the CIDP and Miller Fisher syndrome subtypes
of Guillain-Barré syndrome.
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Patient selfcare
Apart from pain, Guillain-Barré syndrome patients
experience many discomforts, some of which may be solved with
a little patience and creativity.
Guillain-Barré 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 pushbuttons 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 Guillain-Barré syndrome 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 more 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
Guillain-Barré syndrome patients. This necessitates
hospitalisation, with the use of a ventilator as required.
The ventilator stabilises and assists the patients respiration
(breathing), 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 such patients are 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 anaesthetic 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. [Link
to more info].
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.
Guillain-Barré syndrome 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, Guillain-Barré
syndrome patients also usually experience psychically
difficult periods. Being paralysed without warning and constantly
having to depend on people around one can be intolerable.
Guillain-Barré 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 Guillain-Barré.
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 targeting
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 Guillain-Barré syndrome 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 arrhythmia 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 arrhythmia 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 Guillain-Barré syndrome 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 bedridden. 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 Guillain-Barré syndrome
treatments.
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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.
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