Jeffrey A. Segal, President
BS, NSCA-CPT, CSCS,
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Multiple Sclerosis Foundation Internet Newsletter - March 2005
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MARCH 2005 - MSFYi
"Light and shadow are opposite sides of the same coin. We can illuminate our path or darken our way. It is a matter of choice." ~ MAYA ANGELOU
* AVONEX WARNING ISSUED
* NEW EXERCISE RECOMMENDATIONS DO-ABLE
* HEALTHCARE HEROES FOR SECONDARY PROGRESSIVE MS
* DVD TO HELP PEOPLE WITH MS USE COMPUTERS
* CHAMPIONS OF COURAGE GRANTS AVAILABLE
* STEROID THERAPY AND MEMORY
* OILY FISH MAY REDUCE INFLAMMATION
* MS DRUG TRIALS SUSPENDED
* LINK BETWEEN DEPRESSION AND IFN MAY BE RARE
* 2005 COOLING PROGRAM
* ORDER YOUR COPY OF THE FITNESS PRESCRIPTION
* NEW FACT SHEETS AVAILABLE IN ENGLISH & SPANISH
* NEW MS SUPPORT GROUPS!
AVONEX WARNING ISSUED
Biogen Idec and U.S. regulatory officials have issued a warning to doctors stating that Avonex can cause liver damage
and liver failure. The warning, which is in a letter posted on the Food and Drug Administration's (FDA) website, says,
"In post-marketing experience, severe hepatic injury, including cases of hepatic failure, has been reported rarely in
patients taking Avonex."
Revisions to the warnings, adverse reactions, and post-marketing experience sections of a medication are not unusual. According to Amy Ryan, a spokeswoman from Biogen, this warning is "an ordinary change made to the drug's packaging."
Biogen Idec noticed an increased incidence of liver injury and liver failure and initiated talks with the FDA about modifying its prescribing guide "a few months ago." According to Ryan, the interest in liver complications is a current concern of the FDA.
To learn more, visit http://www.fda.gov/medwatch.
NEW EXERCISE RECOMMENDATIONS DO-ABLE
If you've seen the revised recommendations for diet and exercise issued by the Departments of Health and Human Services
and Agriculture, you may be feeling as though you're fighting a losing battle. Besides significantly increasing your
daily intake of fruits and vegetables, the recommendations for physical activity have also skyrocketed, or so it seems.
Adults are now advised to engage in approximately 60 minutes of moderate- to vigorous-intensity activity on most days of
the week, while not exceeding caloric intake requirements. Even for those who already exercise regularly, this is a tall
order. For those with MS, it may seem utterly impossible. But according to Certified Personal Trainer Jeff Segal, who has
been living with MS since 1998, these new recommendations are indeed do-able!
"You cannot reach the top of the mountain in one step, nor would you try. In the same way, thirty, sixty or ninety minutes
of exercise a day can be broken up into segments," Segal explains. "Intensity and duration can be increased gradually as
your body adapts to chosen activities. Progressions in exercise can set the stage for achieving short-term goals, as well
as identifying long-term goals. Finding activities already in your daily routine or that you enjoy doing will elevate your
desire to achieve increased fitness levels. Some ideas include housecleaning, dusting, mopping, parking the car a few
spaces further away, going shopping, walking the dog, going longer distances in your wheelchair, wearing down the rubber
on your walker, lifting your legs or pointing and flexing your toes while watching TV, taking the stairs rather than the
elevator, or even reorganizing your pantry."
Exercise can be a positive path leading to the enhancement of your overall physical and mental health. Remember to consult
your physician prior to starting any exercise program and keep him/her up-to-date on your progress. To learn more or to
download Finding Your Way to a Healthier You: Based on the Dietary Guidelines for Americans, visit
HEALTHCARE HEROES FOR SECONDARY PROGRESSIVE MS
Dr. Solomon Margolin, President of MARNAC, and Dr. Jonathan Walker, a collaborating neurologist, were recently recognized as Healthcare Heroes by the Fort Worth Business Press for their contributions to research into new treatments for secondary progressive MS (SPMS). The doctors were nominated for their development and clinical research of pirfenidone, a new drug to treat advanced cases of MS.
The annual Healthcare Heroes event is in its fourth year of honoring medical professionals who have made a significant impact on the medical community.
"I am hoping that this recognition will help raise awareness for the need to provide MS sufferers with more treatment options, particularly those who are beyond the relapsing and remitting stage of the disease. They are the ones who need it the most," Dr. Margolin said.
The eighty-five year old doctor, who shows no sign of turning in his lab coat anytime soon, invented and holds patents to over 40 U.S and foreign pharmaceutical and medicinal agents. He also developed more than 20 FDA-approved drugs and the anti-inflammatory steroids, prednisone and prednisolone. Since 1990, he has been focusing on developing an effective treatment for SPMS, a disease that so far has defied all attempts at therapeutic medication. Pirfenidone, he believes, could become the first orally effective, non-steroid hormone treatment for SPMS.
In MS, pirfenidone inhibits the synthesis of TNF-a, a tissue hormone that destroys normal brain cells, and prevents the destruction of myelin. Findings from a double-blind, randomized, controlled study of oral pirfenidone for treatment of SPMS showed that the drug was well tolerated. By one month, pirfenidone significantly reduced the incidence of relapses (27.8% on placebo versus 8.0% on pirfenidone). In addition, oral pirfenidone was associated with marked improvement in bladder dysfunction (40.0% on pirfenidone vs. 16.7% on placebo).
These findings indicate a significant effect of pirfenidone on clinical disability and bladder function for those with SPMS and justify the need for a major multi-center, double-blind, randomized, controlled trial. MARNAC is currently pursuing FDA orphan drug status (a program dedicated to promoting the development of products that demonstrate promise for the diagnosis and/or treatment of rare diseases) in SPMS and a potential license to conduct the larger clinical trial.
Source: Multiple Sclerosis, April 2005, vol. 11, no. 2, pp. 149-158 (10)
DVD TO HELP PEOPLE WITH MS USE COMPUTERS
Susan Zachary knows firsthand the value of online support. When she was diagnosed with MS in 1987, she felt isolated and alone. Living in a small, rural town, she had little access to information or support groups. Then, in 1996, when she first discovered an online chat room (that would later become MSWorld) she was thrilled.
"Being able to share experiences, ask questions and get information about MS was more helpful than I could ever have imagined," Zachary says. Today, she serves as Vice-President and web administrator for MSWorld. Not only did she design and construct their website, but she also built the message boards and chat rooms, and created the online resource center.
Now, the 56-year-old woman from San Antonio, Texas, has received a Betaseron Champions of Courage Grant to develop an interactive DVD to teach people with MS how to use their computers. The DVD will include the basics of using computers and provide an introduction to a variety of computer aids to help people with low vision or motor skills issues. From turning on the computer, to setting up email, accessing chat and bulletin boards, and searching online for information, her goal is to empower people with MS.
The new DVD will be available in late 2005. Visit http://www.championsofcourage.org or http://www.msworld.org for updates.
CHAMPIONS OF COURAGE GRANTS AVAILABLE
Are you taking Betaseron? Are you involved in a project that will empower others? Are you coping successfully with MS? If so, you are invited to apply for a grant from the Betaseron Champions of Courage program.
For more information, visit www.championsofcourage.org or call 202-363-3378. Grants are awarded in the spring and fall. The application deadline for the spring review is April 1, 2005.
STEROID THERAPY AND MEMORY
According to a report in the journal Neurology, treatment with high-dose steroids for MS and other diseases may temporarily impair long-term memory. Mental functioning usually returns to normal a few days after stopping the drug.
Dr. Stefan Schwab, from University of Heidelberg, Germany, and colleagues investigated whether high-dose steroid therapy impaired memory in 21 patients with MS and 9 patients with a nerve condition affecting the eye. The comparison group consisted of 33 healthy subjects not treated with steroids.
Authors reported that several long-term memory functions, including learning performance, immediate recall, and delayed recall, decreased with steroid use. Most of these functions returned to normal within 10 days of stopping the drug, although immediate recall seemed to take a bit longer.
Patients being treated with steroid therapy should be advised that, for a few days, certain types of memory function might be disturbed. However, more information is needed to substantiate these findings and also to differentiate between the affects of steroids and the affects of MS on memory.
OILY FISH MAY REDUCE INFLAMMATION
A new study explains how eating a diet high in oily fish, such as salmon or mackerel, in combination with low doses of aspirin can improve inflammation.
Researchers from Harvard Medical School in Boston, the National Institutes of Health in Bethesda, Maryland, and the university of Southern California in Los Angeles have identified an anti-inflammatory lipid in humans derived from an essential fatty acid in fish oil.
The team identified a new class of aspirin-triggered bioactive lipids called resolvins, which may explain, in part, why omega-3 fatty acids have beneficial effects. Resolvins are produced from the omega-3 fatty acids by cellular enzymes and can reduce inflammation in mice.
Resolvins were also identified in humans. Volunteers given omega-3 fatty acids and aspirin were found to have resolvins in their plasma, which were shown to inhibit the movement of inflammatory cells.
Source: Journal of Experimental Medicine, 2005; 201: 1-10
MS DRUG TRIALS SUSPENDED
Because of its links to another treatment withdrawn due to health concerns, GlaxoSmithKline has been ordered to suspend trials of an experimental drug to treat MS and Crohn's disease.
The drug, known as SB 683-699, is in the same class of drugs as Tysabri, which was withdrawn in late February after two patients developed a rare brain infection. GlaxoSmithKline spokesman Chris Hunter-Ward stated that while SB 6830-699 had the same molecular target - to block a substance called alpha-4 integrin - as Tysabri, it showed pharmacological distinctions and "belongs to a different class of agents and therefore is unrelated to Tysabri." Drug studies, which had reached a second phase with 400 participants receiving the drug, had shown no signs consistent with PML. Results of the study were due to be reported in the final quarter of 2005.
LINK BETWEEN DEPRESSION AND IFN MAY BE RARE
It has been suggested that interferons (IFN) may cause depression or worsen pre-existing depression. However, depression data collected from individual clinical trials in MS have consistently failed to find a link.
In this study, pooled data from six controlled studies and seventeen non-controlled clinical trials of subcutaneous IFN beta-1a were evaluated to determine the relationship between IFN therapy and physician reports of depression and suicide.
Physician-reported side effect data from these clinical trials identified a statistically significant association between depression and IFN use during the first six months of treatment. There was also an association between these reported episodes of depression and the discontinuation of therapy, but IFN treatment was not associated with suicide attempts.
While IFN may produce an assortment of symptoms, particularly early in therapy, the lack of increase in depression-rating scale scores and the lack of association with suicide risk suggest that the syndrome may be rare.
2005 COOLING PROGRAM
If heat worsens your MS symptoms, we can help. Cooling is an easy treatment that often brings rapid relief, including improvement in muscle strength, fatigue, and balance.
Experience the benefits of cooling through the MSF's 2005 Cooling Program, which continues through June 1st. We offer the practical and popular cooling vest, along with brim hats, wristbands and neckties. Applications are available online at http://www.msfocus.org or by calling 1-888-673-6287.
ORDER YOUR COPY OF THE FITNESS PRESCRIPTION
If you were diagnosed with MS a decade or more ago, you may have been told not to exercise. This is because doctors once believed that the stress on the body and the increase in body temperature associated with exercise could prove harmful to those with MS.
However, recent research has demonstrated that quite the opposite is true! In fact, numerous studies have shown the safety and efficacy of appropriately designed exercise programs for individuals with MS, including increased muscle strength, improved aerobic capacity, and positive influences on quality of life.
Learn about the many fitness options available - from aquatics and hippotherapy to yoga, Pilates, T'ai Chi and adaptive sports. Call 1-888-MSFOCUS (673-6287) or send an email to firstname.lastname@example.org. Request your free copy today!
NEW FACT SHEETS AVAILABLE IN ENGLISH & SPANISH
Three new fact sheets for individuals with MS and their families are also available.
· A Child's Story About MS
Seven-year-old Billy just learned that his mom has MS. Read this story with your child to open up the lines of communication about MS.
· When the Going Gets Tough, the Tough Get Help
Learn to recognize and overcome barriers to getting the help and support you need.
· Access Resources in Your Community
Learn how the MSF can help you access and utilize community resources.
Share this information with your friends, family, support group members, co-workers, and employers. Coming soon: An Employer's Guide to MS in the Workplace. Call 888-MSFOCUS (673-6287) to request your copies today!
NEW MS SUPPORT GROUPS!
We would like to extend a warm welcome to three New MS support groups in Leeds, Massachusetts; Bad Axe, Michigan; and Clarksville, Indiana.
To learn more, or to find a support group near you, visit www.msfocus.org and click on Regional Resources, or call our Program Services Department at 1-888-MSFOCUS (673-6287). Don't face the challenges of MS alone. Find a support group near you.
**Editor's Note: The intent of this newsletter is to provide information on various medical conditions, medications, treatments, and procedures for your personal knowledge and to keep you informed of current health-related issues. It is not intended to be complete or exhaustive, nor is it a substitute for the advice of your physician. Should you or your family members have any specific medical problem, seek medical care promptly.
For questions regarding this publication, email email@example.com. For support services, email firstname.lastname@example.org.