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Treatment & care of Guillain-Barré patients
updated March 5, 2006

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.

Patient with a catheter installed.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 don’t confide in their doctors could be setting themselves up for complications. They could be putting themselves at risk for no reason, because doctors aren’t 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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