Ask the Doctor
By Dr. Jack Burks
Q: I have been on Provigil for nine years, since it works better for me than other drugs on the tremendous fatigue I experience. It now is not covered by Medicare Part D. FDA wording changed after I had two years of coverage for Provigil, as an "off-label" prescription. I am working to see if this can be changed, but now with the added symptoms of extreme stress.
Also, I have seen articles on low-dose Naltrexone and a study at UCSF conducted with Naltrexone for MS last year. I can't find anything on the study results, which were to be published in February.
A: Provigil® (modafinil) is FDA approved for narcolepsy (sudden sleep attacks), shift work sleep disorders, and obstructive sleep apnea. Check out your sleep situation with your doctor. I have found Provigil to be a good treatment for MS fatigue in many MS patients. I would also recommend you contact the company, Cephalon, to see if you can get the drug less expensively. Individuals may learn more about Provigil at www.provigil.com. Readers may also call (800) 896-5855 for more information. Please keep trying to get the Medicare situation changed. The FDA needs more positive clinical research data before approving Provigil for MS.
Low-dose Naltrexone (LDN) is still being studied in MS at the University of California in San Francisco (UCSF) as well as other sites in the United States, Italy, and other counties. However, no results are available yet. I expect to see results very soon and MSAA will be sure to include such information when it becomes available.
Q: Does cigarette smoking lead to MS? I keep reading about studies which say that it may, but I want to know for sure. I want to know if this bad habit I used to have could have been the source of my MS! No one will commit to a definite answer, but for me, I fit those study profiles to a "T!"
A: Since we do not know what causes MS, it is hard to incriminate any one factor. Viral, genetic, and environmental factors are the leading candidates. Many people with MS have never smoked a cigarette. Therefore, it is not possible to say whether smoking contributed to your development of MS. However, the studies that link smoking to MS are an added incentive to avoid cigarettes.
The effect of smoking on MS, once diagnosed, may be of more importance. Some data has indicated that smokers may have more problems with their MS. In addition, cigarettes have impurities which enter your body, and may cause lung and other problems not related to your MS. Also, cigarettes contain nicotine, which is a stimulant that may cause circulatory problems. In summary, smoking may cause a worsening of MS symptoms for some patients and I recommend that my patients quit smoking.
Q: I'm 41 and was diagnosed in 2001 with relapsing-remitting MS (RRMS). My son is 11 and he is having a lot of pain in his legs, knees, and back. Sometimes he complains of headaches and problems with vision. Is there a simple blood test that can be done to see if he has a specific gene for MS? An MRI of his brain was negative. Could this just be growing pains or something more serious? Thinking back, I've had symptoms of MS for most of my life. Is it possible that I've had MS since I was a child, and I could have passed it on to my son?
A: No specific blood tests can determine if your son has or will get MS in the future. MS beginning in childhood is possible, but unusual. His normal MRI (magnetic resonance imaging) scan of the brain is reassuring. While a genetic association is seen in MS, most people with MS have no relatives with MS. I recommend that your son continue to be monitored, but his risk of developing MS is less than five percent.
Q: I was diagnosed in 2001 with RRMS at age 66, and two years ago, I was re- diagnosed with primary-progressive MS (PPMS). After educating myself about MS and some likely "culprits" for causes, I suspected that the onset of my MS may have been a result of bouts with chlamydia I experienced prior to 2001. I would like to know where I might find the latest research on this topic.
A: A number of infectious agents have been postulated as being associated with MS. Chlamydia is one possible association. Scientific, published, research papers on chlamydia and other agents can be found by going to www.pubmed.gov and typing in the key words "chlamydia and multiple sclerosis." Some scientific data support the association, but other data are less definite. Chlamydia has not been proven as "the cause" of MS. More research is needed in this area to conclusively identify the causative agent(s) involved with MS.
Q: I have MS and my aunt also has MS, leading me to believe we have a genetic propensity for this disease. My 10-year-old son had mono three years ago, and with all the information I keep hearing about Epstein-Barr virus (which causes mono) and a possible correlation with MS, I am worried my son could develop MS. Could you give me your thoughts on this?
A: Like chlamydia in the previous question, Epstein-Barr virus (EBV) is another "candidate" as an infectious agent associated with an increased risk of MS. In fact, a recent article linked EBV and genetic risk factors. However, it is still premature to apply these data to your son's specific risk of MS. If you want to pursue the issue, an MS center consultation is advisable. They can review the genetic link and EBV with you. However, if your son has no neurological symptoms, he is unlikely to have MS. A normal MRI might be added comfort. In summary, his risk for developing MS is low (less than five percent), but greater than the general population.
Q: I was diagnosed with MS in 1984. For the last six years, along with many other symptom-controlling medications, I have been taking 4-aminopyridine (4-AP). I take 20 mg. every six hours around the clock. If I happen to miss a dose, I get very sick. Since 4-AP is not FDA approved, the $168.00 every five weeks comes out of my pocket. I would like to know if any more research has been done on 4-AP and if FDA approval is in the future.
A: I have good news for you. Recent studies with 4-AP (called Fampridine SR®) have been encouraging. AND, it is a slow-release drug, which will likely make it better tolerated. Another clinical trial is underway, and if the results are positive, this new drug may get FDA approval. So far, it appears to help both strength and endurance in people with MS. I am keeping my fingers crossed that it proves effective and will become available to MS patients. You can get more information on Fampridine SR at Acorda Therapeutic's website.
A summary of study results may be found in the Summer 2007 issue of The Motivator in the "MS Research Update" cover story. The information is on page 17, and readers without this issue of the magazine may call MSAA at (800) 532-7667 to request a copy; the article may also be viewed on MSAA's website at the following address: www.mymsaa.org/publications/ summer-07/cover-story/. (Please note that individuals considering this drug or any other treatment for MS should consult their physician before making any changes to their treatment regimen).
Q: I'm 51 and was diagnosed with chronic-progressive MS 10 years ago. I tried Betaseron® for a year without noticeable changes. I then took Avonex® for five years and I only noticed a possible minimal slowing of progression. Is it possible those drugs do not really work as well for chronic-progressive MS?
I never had an exacerbation. I have tried Solu-Medrol® (IV methylprednisolone) five times, Novantrone® three times, and intravenous immunoglobulin (IVIg) therapy three to five times, all with no effects. Why or how is chronic- progressive MS so different?
A: Chronic progressive MS is divided into two main subtypes. Secondary-progressive MS (SPMS) starts out with relapses but transitions to "progressive" after several years. You may have another subtype called primary-progressive MS (PPMS), which is not associated with preceding attacks. PPMS has no known effective treatment. The current treatments are aimed at reducing inflammation as seen in relapsing MS. On the other hand, PPMS is not associated with much inflammation. Therefore, I am not surprised that you have not seen much treatment effect. However, new treatments are being developed, and I'm happy to point out that research is ongoing. Drugs that promote remyelination and protect brain stem cells from dying are also being evaluated.
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Jack Burks, MD, is a neurologist, chief medical officer for MSAA, clinical professor of neurology at the University of Nevada in Reno, Nevada, and member of the Clinical Advisory Committee of the NMSS. He has edited two MS textbooks. Previously, Dr. Burks established the Rocky Mountain MS Center and has served on several Boards of Directors, including the American Society of Neurorehabilitation (past president), the Colorado Neurological Institute, the American Academy of Neurology, and the Consortium of MS Centers. In recent years, he has lectured in more than 30 countries.
|Last Updated on Monday, 25 March 2013 11:08|