Ask the Doctor

Q: After the initial diagnosis of MS has been confirmed, how are additional MRI scans useful?

A: The MRI is one method used for measuring the effectiveness of immunomodulating treatments. It can be especially helpful in a patient who may be having a sub-optimal response to a medication. The MRI may show new MS activity, increasing damage (plaques), and/or degeneration of brain tissue (brain atrophy). This evidence, combined with a neurological evaluation, may indicate the need for a change in immunomodulatory therapy.

Q: When should someone taking one of the interferons consider adding a second therapy, such as Copaxone? And will my health insurance pay for both treatments?

A: No specific rules have been established regarding when to switch or combine therapy. The topic is very complex and opinions differ among experts. The underlying rule is, “if it ain’t broke, don’t fix it.” In other words, if a patient is doing well, as determined by neurological evaluation and MRI, I would not switch or add any therapy. However, if a person is having a sub-optimal response to a treatment, several options are available.
These options include:

• If on a low-dose interferon, switching to either a high-dose interferon or to Copaxone may be considered. If already on a high-dose interferon, some doctors will actually double the dose before switching or combining therapy.

• If on Copaxone, consider switching to an interferon.

• Another option is to add Copaxone to interferon therapy, or vice versa, but this is not widely accepted because of a lack of information. Some theoretical issues and animal data would discourage this combination, because their effects may counteract each other. However, in one small study with people who have MS, the combination was found to be safe. A large study is planned which will look more specifically at the effectiveness of this combination. Currently, most doctors do not combine interferons with Copaxone. We await more scientific
information.

• If someone is having a sub-optimal response to the ABC and R drugs (Avonex, Betaseron, Copaxone, and Rebif), the next option may be to use Novantrone. Initially, the Novantrone research clinical trial was done with high doses of steroids, but without the ABC and R drugs. One recent small study indicated that Novantrone could be added to Betaseron without additional side effects. With this in mind, if a person is getting some benefit from one of the ABCR drugs (even if the effect is sub- optimal), many doctors might add Novantrone (versus substitution).

Your doctor may request a second opinion from an MS center expert if unsure about your response to treatment. Most insurance companies are paying for a combination of ABCR drugs and Novantrone. However, when a double-dose of interferon is used, insurance companies may not pay. Fortunately, pharmaceutical companies have programs that may pay for the extra medication. Patient programs for MS medications include:

• Avonex Support Line, (800) 456-2255, www.avonex.com
• (Betaseron) Pathways Program, (800) 788-1467, www.mspathways.com
• (Copaxone) Shared Solutions, (800) 887-8100, www.copaxone.com
• (Rebif) MS Lifelines, (877) 447-3243, www.msLifeLines.com
• (Novantrone) (800) 466-8639 (option “3”), www.novantrone.com

Q: I was diagnosed with relapsing-remitting MS in 1992 and have not had an exacerbation since starting Betaseron last summer. Despite treatment, one symptom persists: my feet always feel swollen, numb, and tingly. My feet hurt all the time. My neurologist says this is a fake message that MS is sending to my brain, but the pain is very real. Can you recommend anything to help me?

A: These are very common symptoms of MS and can be very hard to treat. First, I make sure that the symptoms are from MS, and not from something unrelated such as diabetes or circulation problems. When MS is determined to be the cause, I often try seizure medications such as Neurontin® and Tegretol®. (Please note that these symptoms are not seizures!) If your doctor is unfamiliar with treating your symptoms, you may be referred for a second opinion at a comprehensive MS center. You will find numerous MS centers throughout the country. To locate one in your area, I recommend you visit the CMSC website at www.mscare.org.

Q: My doctor does not give me much information about my treatment options. Should I expect my doctor to spend the time to explain things to me, find another doctor, or get information elsewhere?

A: Effective communication between the doctor and the patient is a critical issue. This begins with clearly stating your needs to your doctor regarding the type and amount of information you need, so that you may make informed decisions on your treatment options.
If your doctor is not meeting your expectations, specifically state your needs once more. Failure to meet your needs at that point may necessitate changing your physician. Fortunately, many other excellent MS educational resources are readily available.
Organizations such as the Multiple Sclerosis Association of America (MSAA), the National Multiple Sclerosis Society (NMSS), the American Academy of Neurology (AAN), the Consortium of Multiple Sclerosis Centers (CMSC) and several pharmaceutical companies, all have excellent websites. If you don’t have a computer, most organizations have help by phone. These organizations may be reached through:

Please see text from the previous question for websites and phone numbers of pharmaceutical companies. Also, most of these organizations publish books and pamphlets that provide excellent insight into treatment options. For example, MSAA has several publications that offer up-to-date information on important topics in MS, including research, long-term treatments, and symptom management.

Jack Burks, MD, is the chief medical officer for MSAA and is the president of the Multiple Sclerosis Alliance. Dr. Burks is a neurologist, and holds the positions of medical director of the Washoe Institute for Neurosciences, and clinical professor of medicine (neurology) at the University of Nevada School of Medicine in Reno, Nevada. In the 1970s while in Colorado, he established one of the nation’s first comprehensive MS centers. Dr. Burks is one of the founders of the Consortium of MS Centers, the MS Council, and the American Society of Neurorehabilitation. He has served on the Board of Directors of the American Academy of Neurology and is on the Medical Advisory Board of the National MS Society. Along with Ken Johnson, MD, Dr. Burks is editor of an MS textbook, “Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation.” He is also co-editor of the textbook, “Interdisciplinary Rehabilitation of Multiple Sclerosis and Neuromuscular Disorders.”