58. Since the DMT work differently, is it possible to combine them?
Preliminary studies suggest that the combination of beta-interferon and glatiramer acetate is safe. However, larger studies, which are currently ongoing, are needed to confirm that the combination therapy is clinically effective.
59. What are the side effects of interferons?
• Injection site reaction (redness, itching, pain)
• Injection site necrosis, though rare, can be seen with Betaseron® and Rebif®
• Flu-like symptoms (fever, chills, muscle pain, malaise)
• Abnormal white blood count and liver function tests
• Menstrual disorders (see fertility issues)
• Spasticity (may worsen preexisting stiffness)
60. What are the side effects of glatiramer acetate?
• Injection site reaction (redness, itching, pain)
• Chest discomfort, flushing, palpitations, shortness of breath which start within few minutes of the injection and resolve spontaneously within a half-hour; it has never been reported to have any serious consequences.
61. What are the side effects of natalizumab?
• In the original clinical trials for Tysabri, 3 of 3000 patients taking Tysabri combined with another drug developed a very serious brain infection called Progressive Multifocal Leukoencephalopathy (PML). Two of those three patients with PML died. The exact risk of developing PML using Tysabri alone (not in combination with other drugs) is unknown at this time; however, the risk is assumed to be around one in 1,000. Patients on Tysabri may be at risk for other serious infections, such as pneumonia, as well.
• Urinary tract or upper respiratory tract infections
• Headaches, fatigue, depression, stomach aches, joint pain, diarrhea
• Rare allergic reactions that can be mild or serious. Mild allergic reactions do not require treatment. Severe allergic reactions require immediate and intensive medical treatment.
62. How can I know if the DMT is working for me?
Evaluating if a DMT is working is not a simple task. A patient often needs to be on a medication for at least a year or two before a determination can be made. Generally speaking, if the patient is experiencing fewer or no attacks with no signs of disease progression, then in all likelihood, the patient is responding to therapy.
63. How can I know that the DMT is not working? (treatment failure)
If a patient continues to have attacks at the same rate as before s/he started therapy AND/OR shows signs of disease progression, then it is possible that s/he is not responding to treatment. A patient often needs to be on a medication for at least a year or two before a determination can be made.
64. Should I have another MRI of the brain or spinal cord if my disease is not controlled?
If a patient continues to worsen, then repeating MRIs of the brain and spinal cord may be helpful in planning other treatment strategies.
65. Are these drugs needed indefinitely?
At this point the DMTs are intended to be used indefinitely unless there is a treatment failure or a better treatment becomes available.
66. Are there any interactions between the DMT and other drugs commonly used in MS?
The interactions between DMTs and other drugs used in MS have not been fully evaluated. However, results from controlled trials of the DMTs did not suggest any significant interaction with commonly used therapies in MS.
67. What if my insurance does not cover the DMT or what if I have no insurance?
DMT are expensive and may cost thousands of dollars per year. However all these drugs are FDA approved for RRMS and most insurance companies will cover them. The amount covered, however, may vary from one insurance plan to another. Each insurance plan has a different deductible and co-pay that the patient needs to know about.
If the patient has no insurance or inadequate insurance coverage, the drug companies that make these DMTs have patient assistance programs which can provide these patients with free or reduced-cost therapy.
68. Are there any other DMTs available for use in MS?
IVIG has been shown in to help decrease relapses in RRMS. It is considered a second line therapy, and may be considered in patients that do not respond to, or cannot tolerate interferons or GA.
In addition to mitoxantrone (MIT), cyclophophamide (CTX) has been also reported to help slow down rapidly worsening MS, but its use is “off label” since it is not FDA approved for this purpose.
69. How do MIT and CTX work?
Both MIT and CTX are immunosuppressants that have been used to treat different types of cancer. In MS, these drugs work by suppressing a presumably over-active immune system and therefore minimize inflammatory damage in the CNS.
70. How is MIT administered?
MIT is most often administered intravenously every three months until a total cumulative dose of 140 mg/m2 has been given. Less MIT should not be used once the patient has reached this maximal dose because of potential heart toxicity.
71. How is CTX administered?
CTX is administered intravenously every month for six to12 months and even longer if deemed necessary.
72. What are the side effects of MIT?
The most common side effects are:
• Decreased blood count (CBC) with a possible risk of infections
• Abnormal liver function tests (LFTs)
• Nausea, vomiting
• Temporary hair thinning
• Cardiac toxicity
73. What are the side effects of CTX?
The most common side effects are:
• Decreased blood counts (CBC) with a possible risk of infections
• Abnormal liver function tests (LFTs)
• Nausea, vomiting
• Temporary hair thinning
• Bladder irritation if adequate fluids are not given with the CTX treatment
74. Is it possible to administer MIT and CTX at home?
No. MIT and CTX should be administered in an outpatient infusion center specializing in the administration of chemotherapy.
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Fertility issues in MS
75. Does MS affect fertility?
No. MS has no significant effect on fertility.
76. Can a woman with MS have children?
Yes, but pregnancies should be carefully planned. A woman should be taken off her immunomodulatory therapy for one or two months before attempting to become pregnant, for the whole period of pregnancy and after delivery if she decides to breastfeed. Communication between the neurologist and the obstetrician is beneficial.
77. What will happen to MS during pregnancy?
In general, women with autoimmune diseases such as MS tend to do better (have a less active disease course) during pregnancy. Pregnancy appears to have a natural immunosuppressive effect. However there appears to be a higher risk of an MS relapse (attack) for a few months after delivery.
78. Does pregnancy increase the risk of MS?
Studies have shown that pregnancy does not seem to increase the risk of developing MS.
79. Is it safe to breastfeed if I have MS?
It is safe for a patient with MS to breastfeed; in fact, breastfeeding may help decrease relapse rates (attacks) following delivery. However, DMTs may be passed though breast milk and women should not continue to breastfeed once they restart these medications. The timing of when to stop breastfeeding and restart DMTs should be discussed with the neurologist.
80. Are oral contraceptives safe if I have MS?
Oral contraceptive pills are not contraindicated in women with MS if there are no other medical problems which prevent its use. In fact, contraceptive methods are recommended for women using DMT.
81. Can I have a vaginal delivery if I have MS?
MS patients are expected to have a normal labor and vaginal delivery; a Cesarean section may be recommended by the obstetrician for other reasons.
82. DMTs and fertility
Mild to moderate menstrual irregularities (delayed menses, intermenstrual bleeding and spotting, heavy menses) have been noted during the clinical trials with IFN beta-1b but not glatiramer acetate.
83. Are the DMTs harmful in pregnancy?
The interferons and natalizumab were found to increase abortions in animal studies. This effect was not seen with Copaxone® in animal studies.
There are no large controlled studies on the use of DMTs during pregnancy in humans so these medications should be stopped 1 to 2 months before pregnancy. The interferons and Natulizumab are considered by the FDA as pregnancy category C* and GA as category B**. Despite the FDA warning that these drugs should not be used during pregnancy, there have been healthy children born to women who have been on DMTs.
* Category C: no adequate human or animal studies have been conducted OR there are adverse fetal effects in animal studies, but no available human data.
**Category B: controlled human studies indicated no fetal risk, but there are no human studies OR there are adverse effects in animal studies, but not in well-controlled human studies.
84. Breastfeeding and DMT
DMTs may be secreted into breast milk. The FDA clearly states that these drugs should not be used in breastfeeding women. Decisions about whether to breastfeed and when to restart DMTs should be discussed with the neurologist.
85. How are MS attacks treated during pregnancy?
The risks and benefits of using steroids during pregnancy should be carefully evaluated. It is advisable to avoid them during the first trimester of pregnancy when the major fetal systems are being formed. Other therapies like plasmapheresis (PP) have been shown to be safe during pregnancy and can be used alternatively.
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Vocational issues with MS
86. What is the ADA and how does it affect the patient with MS?
The American Disability Act (ADA) was enacted in 1990. Under this act, employers with 15 or more employees are required to provide reasonable accommodations for the qualified person with disability. These reasonable accommodations are determined on a case-by-case basis and according to the physical limitations of the employee. To be eligible for these accommodations, the employee should disclose that s/he has a disability but not necessarily his/her diagnosis.
87. What are considered to be reasonable job accommodations?
Job accommodations are related to restructuring the physical environment (for example: enough space for a scooter, ramps) and scheduling (for example extended lunch break for somebody who has fatigue).
88. What if the employer decides to terminate the employment of the person diagnosed with MS?
Under Title I of the ADA, hiring, promoting, layoff and termination must be made independently of the disability status.
89. What if the physical disability interferes with the job?
Each of the 52 states has a Division of Vocational Rehabilitation office that can address job retraining and alternative vocations. Information regarding vocational rehabilitation in each state can be found on the World Wide Web by doing a key word search for “division of vocational rehabilitation.”
90. Is it possible to fire an employee because of frequent time off related to MS relapses?
Yes it is possible, however the Family and Medical leave Act (FMLA, 1993) allows an employee with a serious medical condition to have unpaid medical leaves (up to 12 weeks per year) and to return to the same position, if he/she is not holding a key job (an example of a key job is being the director of a company). Unpaid medical leaves allow an employee to retain the health insurance benefits paid by for by his/her employer.
91. Since MS is a chronic disease with potential physical limitations, is there any benefit from not working?
MS is not a reason to stop working. As long as the employee is able to fulfill the tasks required of him/her, there is no reason to stop working. In fact, because of the ADA and FMLA acts, many patients are able to maintain a job for a longer time. Working may be needed for financial reasons, to maintain health insurance, and for one’s own satisfaction. The ultimate decision to continue working is made by the patient him/herself.
92. When an employee applies for a new job can he/she be denied coverage from the employer’s health insurance because of MS?
Yes, s/he can be denied if the employer has already predetermined health exclusions criteria for its employees. However this should be applied equally to all employees.
An employer cannot refuse to hire somebody because it may result in higher insurance premiums. Also, the Health Insurance Portability and Accountability Act (HIPAA, 1996) enables a person with a disability to be exempt from preexisting condition exclusions under the new employer. The employee, however, must continue with their previous health insurance benefits as long as possible before being allowed to transfer coverage to the new employer’s plan.
93. What are the qualifications for social security disability insurance (SSDI) and Supplemental Security Income (SSI)?
Both SSDI and SSI are run by the Social Security Administration and both have the same medical requirements for an employee to be eligible. You can learn more on the World Wide Web at: http://www.ssa.gov/dibplan/index.htm, or by calling 1-800-772-1213.
A comparison of SSDI and SSI is shown in the following table.
|Worked and paid FICA
||Financial need independently from previous work history or FICA|
|Paid taxes in recent years
||Same as above|
|Too disabled to work
||Too disabled to work|
|Unemployed or earning less han SGA*
||Unemployed or earning less than SGA*|
|Affected by other workers’ compensation payment
||Affected by other workers’ compensation payment |
|Not affected by non-work income or resources
||Not affected by non-work income or resources|
|Waiting period of 5 months from disability determination to the start of benefits
||No similar waiting period as in SSDI|
|Waiting period of 24 months for Medicare benefit
||Immediate benefit from Medicaid|
|Work activity does not terminate benefits for at least 4 years
||Work activity does not terminate benefits indefinitely |
|Parttime work is possible without losing the money**
||Parttime work is possible without losing the money**|
* SGA : Substantial gainful Activity, $500 and $810 for beneficiaries who are blind.
** As long as the amount of money paid is less than the SGA.
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Diet, Complementary and Alternative Medicine in MS
94. What is the Swank diet?
Several decades ago, Dr. Roy Swank developed a diet for MS patients which is rich in polyunsaturated fatty acids (the kinds of fatty acids found in fish oil and vegetables). Presumably, these fatty acids suppress the production of substances responsible for activating immune cells that may cause damage to myelin and axons in MS. Although the Swank diet may be helpful in immune mediated diseases such as MS, these claims have not yet been proven.
95. What is a vegan diet?
A vegan diet is a strict vegetarian diet free of meat, eggs and milk. There is some evidence that it may be beneficial in immune mediated diseases, but it has not been studied in MS. Following a strict vegan diet for several years can lead to low vitamin B12 levels. Before a patient starts a vegan diet, it is recommended that they discuss the decision with his/her doctor.
96. What about the affects of certain vitamins?
Vitamin D and MS
Preliminary studies have shown a possible beneficial effect of vitamin D in some autoimmune diseases including MS. However, excessive use of vitamin D can be harmful. Studies are under way to better define the role of Vitamin D in MS. Until results from these vitamin D studies are completed, it is not recommend that a patient take extra vitamin D (more than is found in a multivitamin).
Vitamin C, E and beta-carotene, and MS
Careful use of vitamins C, E and beta-carotene according to dietary recommendations may be beneficial in immune mediated disorders. There are no controlled data that prove the effectiveness of vitamins C, E and beta-carotene in MS. Excessive use of these vitamins may be harmful. At this time, it is not recommended that a patient take extra vitamin C, E, or beta-carotene (more than is found in a multivitamin).
Vitamin B12 and MS
The use of vitamin B12 in MS has been subject of long standing debate. Currently there is no evidence for routine administration of vitamin B12 to MS patients. It should be used only if there is a documentation of vitamin B12 deficiency or is otherwise medically indicated. Otherwise, it is not recommended that patients take more vitamin B12 than what is found in a multivitamin.
97. Does mercury affect people with MS?
Mercury present in dental fillings was thought to be toxic to people with MS. However, no studies have shown such toxicity and there is no reason to remove mercury from dental filling in patients with MS.
98. What is Feldenkrais body work?
Feldenkrais – a type of physical therapy where patients are taught body awareness – has been shown to have some positive role on stress perception and anxiety in MS.
99. Can hyperbaric oxygen therapy (HBOT) help people with MS?
HBOT has been studied in MS, however, the results were conflicting. It has not been shown to have a beneficial effect on the long-term outcome in MS. With the availability of DMTs and other symptomatic treatments, HBOT is not commonly used in MS.
100. Is Hydrotherapy beneficial to people with MS?
Studies have shown that hydrotherapy, or pool therapy, may decrease spasticity (stiffness) in MS. Patients who are interested in hydrotherapy can enquire with their local chapter of the National MS Society (NMSS) if there is an “MS friendly pool” in their area. Local NMSS chapters can be found by calling 1 (800)FIGHT-MS (1(800)344-4867).
101. Are there benefits to hippotherapy (horseback riding)?
Hippotherapy has been suggested to be of possible benefit in MS, particularly in reducing spasticity and balance problems.
102. What are some commonly used herbal therapies?
Ginkgo biloba, St. John’s wort, ginseng, kava, echinacea, saw palmetto and primrose oil are some of the commonly used herbal therapies; some of them are marketed in Europe as medications, whereas in the USA they are available as dietary supplements. While herbal therapies may have some benefit in MS, caution should be taken when using these supplements.
Ginkgo’s fruits and seeds have been used for millennia in traditional Chinese medicine. In clinical practice it is used for cognitive impairment, dementia and tinnitus (ear buzz). However, there is no evidence demonstrating that ginkgo enhances normal cognitive function. Studies have failed to demonstrate an improvement in cognition in MS patients taking Ginkgo.
St. John’s wort (Hypericum Perforatum)
This agent is used for the treatment of mild to moderate depression. Its effect on depression has been proven in a few comparative studies. It is well tolerated and safe when taken by itself though it has a high potential for interactions with other drugs. Before starting St. John’s Wort, it is recommended that patients discuss this herbal therapy with their doctor.
Ginseng is one of the most commonly used herbal therapies as an aphrodisiac and energy enhancer. Despite this, scientific data about its presumed benefit were not impressive. There is no documented effect of ginseng in MS patients.
This herbal agent is used for treatment of respiratory infections. Although echinacea is thought to stimulate the immune system and possibly have some anti-inflammatory activities, there is no data on its potential effects in MS patients.
This plant has been used for the treatment of bladder and pelvic problems. However, Saw palmetto does not seem to be helpful in MS.
Kava is used as an anti-anxiety agent and seizure suppressant. It is a commonly used recreational drug in the south pacific and has been shown to be of some benefit in mild anxiety. However, its major limitation is liver toxicity, especially in people who use other substances with potential damage to the liver.
Evening primrose oil (EPO)
EPO is used in some autoimmune diseases such as rheumatoid arthritis. Presumably it has some anti-inflammatory activity. A controlled study of EPO in MS has not been done yet.
View more information about integrative medicine services at the OSU Center for Integrative Medicine or call (614) 293-9777.
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Genetics and MS
103. My twin sibling has MS; what is my risk of having the disease?
In general if you are an identical twin, your risk of acquiring MS is about 25percent to 30percent. If you are a fraternal twin, your risk is about 5percent
104. I have a sibling with MS; what is my risk of having the disease?
Your risk of having MS is approximately 5percent.
105. My mother (or father) has MS; what is my risk of having the disease?
Your risk of having MS is about 2.5percent.
106. Both of my parents have MS; what is my risk of having MS?
Your risk of having MS is about 5percent.
107. Who is at risk of developing MS?
It is very difficult to predict who is at risk to develop MS. In theory, anybody can develop MS. Populations with a genetic makeup composed of northern and central Europeans are more likely to develop MS than others. In contrast, native Africans are least likely to develop MS.
108. Is there any difference MS in African-Americans?
It was originally thought that MS happens in Caucasian populations in colder areas or northern latitudes. However, we now know that the disease is not that uncommon in African-Americans. African-Americans may have a more aggressive disease course compared to Caucasian MS patients. Also, African American patients tend to have more frequent episodes of optic neuritis and transverse myelitis. The reasons for the differences are currently being studied.
109. Is MS associated with other autoimmune diseases?
In general, having one autoimmune disease such as MS raises the chance of having other autoimmune diseases such as diabetes of youth, thyroid disorders, skin diseases (eczema and psoriasis), connective tissue diseases (lupus and others) and inflammation of blood vessels known as vasculitis (giant cell arteritis and others).
The risk of autoimmune diseases clustering in one person or one family is not well understood, but is occasionally seen.
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Infections and MS
110. What is the role of infections in MS?
Infections may trigger an MS attack. Particularly common are flu and urinary tract infections. These infections may also cause existing MS symptoms to worsen temporarily (see pseudo-exacerbation).
111. What is a pseudo-exacerbation?
Infections (such as the flu or a urinary tract infection) or a fever can sometimes cause existing MS symptoms to worsen temporarily which can mimic an MS attack; this is known as pseudo-exacerbation. Appropriately treating the infection (for example taking antibiotics for a urinary tract infection) often leads to improvement of worsened MS symptoms without using steroids.
112. Do infections cause MS?
Over the years, several infectious agents have been implicated as a possible cause or trigger of MS. Thirty years ago, viral infections such as mumps and measles were thought to be a contributing factor in MS. More recently, infectious agents such as herpes virus type 6, Epstein-Barr virus (mononucleosis) and Chlamydia (a bacterial infection) have been implicated as potential causes of MS. At this time, there is no conclusion that any single infection is definitely related to MS.
113. Can you get MS from vaccinations?
Vaccines have been associated with rare, seemingly immune-mediated neurological complications. However, studies have not supported a relation between flu, tetanus and hepatitis B vaccinations and MS exacerbations. In general, there is no reason why an MS patient should not receive a vaccine if it is clinically indicated. Caution, however, should be taken when considering taking an attenuated live vaccine. Concerns regarding individual vaccines should be discussed with the patient’s primary care doctor.
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Exercise and rehabilitation in MS
114. Can MS patients exercise?
Yes! Exercise is not contraindicated in MS patients. Each patient has to learn his/her own limitations. Consulting a neurologist is highly recommended before starting any exercise program. Swimming and aquatic programs are very beneficial. Physical rehabilitation can be helpful in ataxic and spastic patients.
115. Does rehabilitation help with spasticity?
Stretching exercises and the use of splints can help treat spasticity from MS. These exercises and manipulations can be used in addition to anti-spasticity medications.
116. What's the role of rehabilitation for swallowing difficulty (dysphagia)?
Patients with swallowing difficulties should undergo a swallowing evaluation by a speech pathologist. Special tests using X-rays may help identifying the swallowing problem and guide suggestions for appropriate treatment.
117. Is rehabilitation helpful for pain?
Rehabilitative approaches may be helpful in MS patients with pain. Physical and occupational therapy can be useful.
118. Is there bowel and Bladder rehabilitation?
There are specific exercises (for example, Kegel exercises) that may be helpful in improving bowel and bladder control. Specialized rehabilitation centers may provide the best types of therapy for these problems.
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Anesthesia, surgery, dental care and MS
119. Can MS patients have anesthesia safely?
MS is not a contraindication to having anesthesia. MS patients can receive epidural, local and general anesthesia as recommended by an anesthesiologist. MS also is not a contraindication for any surgery.
120. Are there any differences with dental care for patients with MS?
MS patients should undergo dental care as planned. Only those patients who are on immunosuppressants (chemotherapy) or actively taking steroids should consult with their neurologist to discuss the risk of infection prior to a dental procedure.
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