Multiple Sclerosis Centers of Excellence
MSCOE - Treatment FAQs
FAQ's Relating to the treatment of MS. To ask a question send an email to: MSCentersofExcellence@va.gov
- There are several people I know that are taking chemotherapy for their MS. Isn’t chemotherapy only for people with cancer?
- I have been diagnosed 18 years ago with MS and now it has hit me real hard, I'm not able to go the bathroom without a catheter and have to use a walker, what can I do?
- I have noticed a decline in my cognitive abilities, especially in processing information. Is the VA using specific protocol to treat declining cognition?
- I am over 60 and have had MS symptoms for at least 20 years and possibly longer. I have been diagnosed with MS. I can describe the litany of symptoms, but think this would be counterproductive unless asked. Is there a drug treatment that would benefit me?
- I am a 38 y/o man w/MS and I have read numerous things about the benefits of marijuana with MS disabilities. When will the VA if ever begin using marijuana for MS patients?
- Is depression a common symptom with MS? Can it be treated?
- I am disabled, around 50 yrs. old. I was diagnosed with MS in 2001. I started Rebif for 18 mos. It was too expensive. Then I switched to L.D.N. for 18 mos. Now many scars in spine "T" and "C" sections, restarted Rebif. When will the VA make Rebif 44mcl. available? I can give myself an inch and a half shot of Avonex. And a 1/2" needle of Rebif-I can do, just can't afford it. That's why I go off it and on it. I have great doctors at the VA and they offered Avonex to me...I just can't do it. Thanks
- Can a veteran who is rated "total & permanently" disabled at 100% be allowed to work a job? If so, what are the stipulations for this situation?
- Should I give flu shots to patients on disease modifying treatments for MS?
- My doctor has recommended me to consider a treatment of Novantrone. When taking this medication are other MS medications such as Copaxone stopped?
- How long after the onset of an exacerbation can steroids be given?
- I have had exacerbations before, and I know I am having one now. Because I don't "look" as bad as the neuros have seen in other people, they constantly make me feel defensive as if I'm malingering. Most recently, my neuro nurse basically ended a conversation with "well there's nothing else that can be done" (after failing to arrange IV steroids due to logisttics). I am in pain, I am angry, and I feel as if VA personnel are just blowing me off when I try to seek help. It wasn't like this in Atlanta--Augusta, GA is its own little world.
- My husband has secondary progressive ms. We were wondering if the VA has done any research on the benefits of hyperbaric oxygen therapy for ms. There are many articles and, apparently, countries touting the benefits of that therapy. Thanks.
- I have been on the following treatments since my MS condition was verified: Copaxone (1998-1999), Betaseron (2000-2001), Avonex (2001-2002). What do you recommend to both repair damage & eliminate the condition inflicted upon me. I have already tried steroids for a brief interval as well as chemotherapy medication developed specifically for MS.
- Should a new lesion on MRI scan be treated with steroids?
- I served in the navy for six years. Got out of the service for about 11 years. Went in to the army reserves for about four years started having medical problems and got out. I have been out of the reserves for about five years and have multiple sclerosis. Does the seven year after discharge also apply for reserves? Can I apply for disability through the VA?
- What are interferon-beta neutralizing antibodies and do they matter?
- How often can steroids be given?
- What is Novantrone? How does it act on MS? How is it taken? What are the side affects?
- What determines whether an exacerbation will remit?
High Dose Chemotherapy is been used for many years to treat MS. It involved using chemotherapy medications to suppress the immune system. The evidence for use of these medications in multiple sclerosis is incomplete, and the effects of the treatment on most patients with MS remain unknown. The treatment has been reserved primarily for patients who have unusually aggressive disease, and who are failing therapies that are more conventional. A recent report in a small number of patients has shown that some patients with unusually aggressive disease seem to respond to the treatment by stabilizing their condition. This study supports the use of high dose chemotherapy in patients with severe courses of MS. The benefits of using high dose chemotherapy in patients with less aggressive courses remain unknown.
As you know, MS is a progressive disease and there are a variety of symptoms that people experience at different stages of the disease. However, there are good symptom management strategies available. It is important that you share your medical changes with your healthcare provider.
Bladder problems affect almost 90% of the people with MS. Many people report that these problems can improve with medications; and some report that the problems seem to come and go, but do not totally disappear. There are a variety of bladder management programs that can help you with bladder dysfunction. Your health care team can prescribe appropriate medications, specialty aids and diet an exercise programs that can help you manage eliminating urine from your system.
The majority of people with MS also experience changes in mobility. Many need a little extra help walking by using a cane or other assistive devices. The important thing to note is that using canes, walkers, motorized chairs and scooters are actually increasing your mobility. These assistive devices are giving you the freedom to go and do what you want. Another thing to consider, is that using mobility aids help conserve your energy. Many people with MS use motorized scooters while shopping. Instead of being concerned about "how tired they will be shopping" they know that they will have more energy using the scooter. The VA has a variety of assistive aids to keep you mobile. So think of symptom management aids as a way to support you while you Live with MS.
Changes in cognition can occur in MS for various reasons. They can be a direct result of brain changes. However, they can also occur due to depression, fatigue, and pain. The strategy for dealing with cognitive change can vary depending on the factors bringing about the change. The first strategy is to treat the disease as effectively as possible. The second is to deal with the associated symptoms through medication and in the case of depression, psychotherapy. Interventions for specific persistent cognitive difficulties typically involve learning strategies to work around areas of difficulty. These techniques may include using notebooks and organization techniques to help cope with forgetfulness and organizational difficulties. These compensatory techniques can vary depending on the patient and the specific problem areas. Different medications have also been tried as methods of enhancing cognition. At present, there is no one specific protocol. However, working toward enhancing ways of assisting patients with cognitive difficulties continues to be a focus of research.
4. I am over 60 and have had MS symptoms for at least 20 years and possibly longer. I have been diagnosed with MS. I can describe the litany of symptoms, but think this would be counterproductive unless asked. Is there a drug treatment that would benefit me?
Yes, there are medications that will be helpful to you. There are medications to help manage "the disease of MS" and there are medications that will help manage the symptoms that accompany MS.
There are medication treatments for relapsing-remitting and primary progressive MS. The treatment for MS is called "treatment of the disease with disease modifying agents(therapies)", (or DMTs=disease modifying therapies). Presently these medication treatments are indicated for relapsing forms of the disease, people who have relapsing remitting or secondary progressive disease. Relapsing remitting (RRMS) disease is characterized by sudden loss of neurological function lasting a period of hours or days. After a loss, there is a return to usual or nearly usual function. Periods between relapses are stable and absent of disease progression. Secondary progressive (SPMS) is a phase of the disease in which a person has a relapsing-remitting course that becomes consistently progressive and includes occasional relapses and minor remissions. Deficits accumulate without recovery between relapses.
The other form of medications is for symptom management. These medications are indicated for everyone. Medications and rehabilitation can be useful to manage cognition, fatigue, spasticity, pain, bladder, bowel, sexual functioning, etc.
It is important to share your symptoms with your healthcare providers. They will be able to help you manage your disease and your symptoms with the appropriate medications and rehabilitation strategies.
In general the VA follows the U.S. Food and Drug Administration (FDA). The FDA was established by the federal government to evaluate the safety and effectiveness of drugs (The VA is not set up to do that). If the FDA approves marijuana for some medical use then the VA would be very likely to provide it to patients.
It is generally acknowledged that depression is one of the more common symptoms in MS. Most studies have found that approximately 50% of individuals with MS will meet criteria for a major depressive disorder at some point in their lifetime. The exact cause of depression is not always known, and likely involves a number of biological and psychosocial factors. Increased rates of depression in MS have been linked in some studies to disease activity, and to the specific location of brain lesions. Adjustment to the unpredictable and progressive loss of functioning, uncertainty, hopelessness, perceived intrusiveness, and loss of social support have all been shown to contribute to depression as well.
Regardless of its origin, depression is a real phenomenon that can have a significant impact on quality of life, and it is treatable. Although it is important to acknowledge that the MS disease process may contribute to depression, it is more useful clinically to understand the duration, intensity, and variety of the depressive symptoms themselves. Both psychotherapy and antidepressant medications have been shown to be helpful to improve depression in MS.
7. I am disabled, around 50 yrs. old. I was diagnosed with MS in 2001. I started Rebif for 18 mos. It was too expensive. Then I switched to L.D.N. for 18 mos. Now many scars in spine "T" and "C" sections, restarted Rebif. When will the VA make Rebif 44mcl. available? I can give myself an inch and a half shot of Avonex. And a 1/2" needle of Rebif-I can do, just can't afford it. That's why I go off it and on it. I have great doctors at the VA and they offered Avonex to me...I just can't do it. Thanks
On the VA national formulary (VANF) medications are listed by their generic name and not by their trade name. Interferon beta 1-A is on the VA national formulary list. There are two different pharmaceutical companies that make interferon beta 1-A for MS. One company, Biogen, markets this medication under the trade name Avonex® and the other company, Serono markets this medication under the trade name Rebif ®. Both of these medications are interferon beta 1A, but their routes of delivery, frequency, usual dosage and side effects are different. Generally, each Veteran Integrated Service Network (VISN) is able to use whichever agent (medication) meets the majority of their patient’s needs or in most cases is the preferred agent (medication) based on health care providers in that VISN. Patients could get the alternative agent (medication), but it would require that the health care provider petition the local pharmacy committee citing why one medication is preferred over the other. Your provider would use your health history and your response to the medication Rebif ® to document the need for this particular interferon beta l-A.
Generally speaking, veterans who receive service-connected compensation for a physical disability, with a few exceptions, CAN work without penalty to their SC compensation. The exceptions are veterans who have some psychiatric disabilities or veterans with individual unemployability. (For explanation of "individual unemployability," see FAQ that begins "How can a veteran with MS know...") If you are service connected and fall into one of those two categories, it may be helpful to contact a veterans service organization for assistance prior to making a decision about returning to work. Veterans who receive a non-service connected VA pension are, by definition, not able to work due to a disability. Further, to qualify for non-SC VA Pension the individual's income must fall below the pension amount ($910 per month for a single veteran in 2007). Finally, persons receiving Social Security Disability Income may earn as much as $900 per month (in 2007, and maybe more depending on the disability) and still be eligible for benefits. Refer to the Social Security website for more information: http://www.ssa.gov/disability/
People on any of the disease modifying agents may receive any flu shots containing killed virus such as those in injectable form. They should NOT receive the nasal spray because it contains attenuated virus. People with MS should approach getting a flu shot just like any other person in the community--those who are at special risk because of pulmonary limitations or exposure should be very much encouraged. Those at average or low risk should go through the same decision process as any member of the community. The perception that we would not want to immunize because it stimulates the immune response and could trigger an exacerbation is FALSE. For more information, see: Managing MS: Vaccinations
There are differences of opinion on this matter. In two previous studies, Mitoxantrone (Novantrone) was used alone or combined with steroids. Some doctors use the drug alone because that is what was done in these studies. Other doctors continue the previous medication combined with the mitoxantrone, hoping that the combination might be more effective that either medication alone. A recent study was done of physician's practices regarding mitoxantrone (the RENEW study). In this study, about 70% of patients continued their previous medication after mitoxantrone was added. Only further research can determine which of these two approaches will be the most beneficial.
The earlier they are given the more likely they are to help. There is no fixed cut of time but generally it is desirable to start steroids within days of the onset of an attack and it is unlikely that they will help if started weeks or months after onset.
12. I have had exacerbations before, and I know I am having one now. Because I don't "look" as bad as the neuros have seen in other people, they constantly make me feel defensive as if I'm malingering. Most recently, my neuro nurse basically ended a conversation with "well there's nothing else that can be done" (after failing to arrange IV steroids due to logisttics). I am in pain, I am angry, and I feel as if VA personnel are just blowing me off when I try to seek help. It wasn't like this in Atlanta--Augusta, GA is its own little world.
We are sorry you are experiencing difficulties with the system. Generally, self-reports on overall health and MS symptom management are the best information you can share with your providers. And, as you know, there are medications that can help with pain management. If you feel that you are unable to resolve the “MS symptom management issues” with your health care provider you have the right to contact a Patient Advocate at your local medical center. Patient Advocates act as an ombudsman and can intercede on behalf of patients and/or family members. They can help with communicating with various parts of the organization and help coordinate your health between your former medical center and the new one. Patient Advocates are trained to make referrals to management if the patient or family member is still unsatisfied at the end of their interaction or if the veteran/family member insists on pursuing the issue with higher authorities. It is important that you are heard and Patient Advocates will make every effort to resolve your concerns as quickly as possible. Another approach is to contact a Veteran Service Organization like Paralyzed Veterans of America (PVA). PVA representatives have unique skills to help ensure that veterans are receiving the appropriate care they need. Use the link below to find your representative: Paralyzed Veterans of America http://www.pva.org
13. My husband has secondary progressive ms. We were wondering if the VA has done any research on the benefits of hyperbaric oxygen therapy for ms. There are many articles and, apparently, countries touting the benefits of that therapy. Thanks.
To our knowledge, there are no VA trials ongoing looking at the use of hyperbaric oxygen with MS. A review on the US Government listing of current clinical trials http://www.clinicaltrials.gov found no studies either. We reviewed the literature on the use of hyperbaric oxygen to treat MS, and it wasn’t encouraging. Although there may be some ongoing research, nothing has been reported in the literature. A review by a German author (the latest review we could find) in 2005 referred to “several small studies with heterogeneous results which, overall, do not support its use”. Another “study of studies” (called a Cochrane Database Review) had the following to say: “We identified ten reports of nine trials that satisfied selection criteria (504 participants in total). Two trials produced generally positive results, while the remaining seven reported generally no evidence of a treatment effect..." The REVIEWER'S CONCLUSIONS: "We found no consistent evidence to confirm a beneficial effect of hyperbaric oxygen therapy for the treatment of multiple sclerosis and do not believe routine use is justified. The small number of analyses suggestive of benefit are isolated, difficult to ascribe with biological plausibility and would need to be confirmed in future well-designed trials. Such trials are not, in our view, justified by this review.” At this time, the use of hyperbaric oxygen is still under investigation. For future therapies and treatments, please refer to our website and the National MS Society's website for updates on new and novel approaches to treat MS.
14. I have been on the following treatments since my MS condition was verified: Copaxone (1998-1999), Betaseron (2000-2001), Avonex (2001-2002). What do you recommend to both repair damage & eliminate the condition inflicted upon me. I have already tried steroids for a brief interval as well as chemotherapy medication developed specifically for MS.
Unfortunately there are no treatments that will eliminate multiple sclerosis. There are several treatments that have been shown to slow down the disease. To date, these include: Avonex, Betaseron, Copaxone, Novantrone, and Rebif. It is anticipated that Tysabri will be approved in the next few months. Selecting among these medications has to be done on an individual basis and requires working closely with your healthcare provider. Though these medications will not completely stop the disease, they are helpful in slowing down the progression of the disease over the long run. There are also as yet no treatments that speed up the repair of damage in MS. A major research effort is underway to develop treatments to repair damage, and there are several promising medications being studied, but to date these are all still in the research stage. It is important to maintain physical functioning to the best degree possible. This involves exercise, stretching, proper use of rehabilitation equipment, etc. Many believe that physical exercise helps to promote healing. Working closely with your healthcare provider is important to access these rehabilitation treatments. We hope this is helpful.
Steroid treatment has been shown to reduce the duration of exacerbations but not alter the likelihood of disability in the long run. Whether steroids are used is based on the disability caused by an exacerbation, therefore if an active lesion on MRI is found without any clinical change, no steroids would be given.
16. I served in the navy for six years. Got out of the service for about 11 years. Went in to the army reserves for about four years started having medical problems and got out. I have been out of the reserves for about five years and have multiple sclerosis. Does the seven year after discharge also apply for reserves? Can I apply for disability through the VA?
Individuals who are diagnosed with MS while they are in the military or within seven years of their honorable discharge are eligible for a service-connected disability. This is called the presumptive period. However, if you are eligible for VA services, whether you are service connected or not, you can receive medical care for your MS. The primary factor in determining basic eligibility to VA benefits is "Veteran status” which is established by active military, naval, or air service and a discharge or release from active service under conditions other than dishonorable. Reservist who served on active duty can establish veteran status and may therefore be eligible for VA benefits. This depends on the length of active military service and the character of discharge or release. In addition, reservists who are never called to active duty may qualify for some VA benefits. Below is a link addressing National Guard and Reservist benefits. http://www1.va.gov/vhapublications/ViewPublication.asp?pub_ID=1138 For more information on how to apply for benefits, contact your veteran service organization representative that is available at each medical center.
Neutralizing antibodies (NAB) to interferon-beta occur in some patients receiving human recombinant inteferon-beta. NAB are detected in patients by demonstrating that a serum sample can block in vitro a biologic effect of interferon-beta, such as inhibition of viral infection or induction of MX protein. NAB bind to interferon-beta and interfer with its ability to bind to the Type I inferferon receptor. There are commercially available tests to detect NAB. NAB are given a titer and typically titers > 20 are considered significant. The three formulations of interferon-beta differ in the prevalence of induction of NAB. Avonex induces significant NAB titers in 2-5% of patients; Rebif induces NAB in 15-25% of patients; Betaseron induces NAB in ~30% of patients. NAB typically appear 6-18 months after therapy is started. They may disappear after continued therapy but frequently do not, particularly if the titer is >100. NAB induced by one interferon-beta product cross react with the other products. It remains uncertain whether or not there is any clinical significance to the development of NAB. Some physicians believe that the preponderance of evidence indicates that patients with persistent NAB with titers >20 do not derive any benefit from continued interferon treatment and recommend switching these patients to glatiramer acetate. Other physicians do not believe this and do not worry about the risk of inducing NAB or check for them.
Chronic daily steroid use can lead to hypertension, diabetes and other serious health problems and should be avoided. High dose steroid treatments lasting days to weeks are generally not given more frequently than 3 to 4 times a year. In some situations, single high doses of steroids may be given once a month.
Novantrone is a chemotherapy medication that was first used to help fight cancer. It acts on MS by killing some of the white blood cells that are thought to lead the attack on the brain. Novantrone is given intravenously once every three months. This is done as an outpatient. An intravenous line is placed. The Novantrone is then given through this line over about an hour. The line is then removed and the patient is then sent home. The entire process takes about two hours. Echocardiograms are done to measure heart function before using the medication for the first time, at one year, at two years, and at every dose after two years. Blood tests and a urine test are needed a few days before each dose. Side effects from this drug are generally mild. Occasional patients may get nausea that can be treated with anti-nausea pills. Patients often feel fatigued for 2-3 weeks after a dose. The white blood cell count drops down for about two weeks after each dose. During this time, there is a slight increased risk of infections including lung infections, bladder infections, sores in the mouth, or easy bruising. The drug is a dark blue color and may turn the white of the eyes blue, or the urine green for a couple of days. The color then resolves. There may be thinning of the hair, though this is mild in most cases. The medication can damage the heart muscle. To avoid damaging the heart muscle, the total dosage is limited (to eleven doses for most patients). Echocardiograms are done to follow the heart function during treatment. Most women stop having their periods while on the drug. In some cases, the periods do not come back after stopping the drug. This may lead to infertility in women. There are rare reports of leukemia in people who have received Novantrone. This is so rare that it is uncertain whether the drug caused the leukemia or not.
About 80% of exacerbations are followed by remission. This means that 20% of the time patients will not fully recover from an exacerbation and will be left with permanent impairment. In general, the chances of permanent deficits increase with age, disease duration and number of prior exacerbations.