Tuesday, November 28, 2006

Multiple Sclerosis Foundation Internet Newsletter

We value your opinions!
Please let us know what you think of the MSFYi, this month's features, or send ideas for future issues.

NOVEMBER 2006 - MSFYi

Happy Thanksgiving from all your friends at the MSF!

""Happy is the house that shelters a friend." ~ Ralph Waldo Emerson

In This Issue
* DOCTORS USE CAUTION WITH TYSABRI®
* ESTRIOL FOR TREATMENT OF MS
* T'AI CHI IMPROVES FITNESS IN ELDERLY WOMEN
* THE EFFECTS OF VEGETABLES ON COGNITION
* LAST CHANCE FOR "FOCUS ON YOUR FEELINGS" HOLIDAY GIVEAWAY!
* MS LINKED TO ABNORMAL LIVER TEST RESULTS
* LAST CALL FOR ADAPTIVE SKIING SCHOLARSHIPS
* MEN CAN GET OSTEOPOROSIS, TOO
* A WINTER'S WISH TO BENEFIT MS RESEARCH
* BETASERON APPROVED FOR CIS

MSF News
* MSF HOSTS 3RD ANNUAL NURSE SYMPOSIA
* NATIONAL MS EDUCATION & AWARENESS MONTH™
* 2007 MSF CRUISE FOR A CAUSE TO ALASKA



DOCTORS USE CAUTION WITH TYSABRI®
Doctors are proving more cautious than expected about prescribing Tysabri, which was re-launched in July after being suspended due to safety concerns.

A Reuters Primary Research survey of 63 neurologists indicates that Tysabri will be used in less than 1 percent of MS patients during 2006.

Since July, only 47 of more than 8,500 patients treated by physicians surveyed had used Tysabri, despite the fact that more than 700 patients had discussed using it.

The survey also showed that more than 75 percent of the patients who had used Tysabri prior to its suspension have decided not to use it since its reintroduction.

"At our center, we recommend Tysabri cautiously," confirms Dr. Roger Williams, Medical Director of the Northern Rockies MS Center in Billings, Montana. "Initially, we may have considered Tysabri as first-line therapy for relapsing-remitting MS. Now, we use it for patients with breakthrough disease after one or two of the C-R-A-B drugs. Hence, it now competes with Novantrone and Cytoxan as a potentially more aggressive and effective therapy, but one that is risky, riskier than the C-R-A-B drugs but comparable to chemotherapy. We have enrolled eight patients for Tysabri. All patients have been pre-approved by third party payers. However it may take three to four months to work out the glitches of reimbursement."

"I am also being cautious with Tysabri," adds Dr. Ben Thrower, Medical Director of the MS Center at Shepherd Center in Atlanta, Georgia. "I use it in individuals who have failed the A-B-C-R drugs and who have aggressive enough disease to warrant the risk. The problem is that we really don't know what the true, long-term risk of PML will be. We work with a little over 2,000 people with MS, but only consider about 17 of them to be Tysabri candidates."

Another issue may be the 'Touch' Program, a special training required for physicians prescribing and personnel administering Tysabri. "I have yet to be 'touched' by Biogen-Idec so I cannot prescribe Tysabri yet," says Dr. Greg Zarelli, Staff Physician in the Department of Neurology at Kaiser-Permanente NW in Clackamas, Oregon.



ESTRIOL FOR TREATMENT OF MS
The first large-scale trial of the female hormone estriol for the treatment of MS is about to begin. UCLA neurologist Dr. Rhonda Voskuhl is leading a team of investigators to conduct a two-year, controlled clinical trial of estriol involving 130 women with early relapsing-remitting MS.

Estriol levels rise significantly during pregnancy, when most women's MS disease activity declines. Consequently, some researchers suspect that estriol may play a role in the reduction of symptoms during pregnancy. Preliminary research has indicated that estriol may help protect against the immune attacks associated with MS.

In the near future, newly diagnosed women with relapsing-remitting MS will be recruited for this two-year study at seven medical centers across the country (Los Angeles, CA; St. Louis, MO; New Brunswick, NJ; Columbus, OH; Chicago, IL; Salt Lake City, UT; and Detroit, MI).

According to Dr. Voskuhl, the oral estriol study will aim to simulate some of the disease protection offered by pregnancy. Investigators will administer estriol in pill form in combination with Copaxone. The team will evaluate effects of the treatment combination on relapse rates and several clinical and magnetic resonance imaging measures of disease progression.

The consensus in the U.S. is that all patients with relapsing-remitting MS should be on an injectable disease-modifying medication as they have been proven to reduce relapses by a third, according to Dr. Voskuhl.

"Therefore, it is no longer ethical to have an arm of a trial that receives only placebo if it goes on for longer than four to six months. Thus, ours has to be an 'add on' study."



T'AI CHI IMPROVES FITNESS IN ELDERLY WOMEN
In older women, a short style of t'ai chi may promote physical fitness better than brisk walking, according to a small study. In 19 women, both activities were compared for their effects on aerobic capacity, heart rate variability, strength, flexibility, balance, psychological status, and quality of life.

Participants in this study were sedentary, with an average age of 71. Another group of similar elderly women from the same population served as an inactive comparison group. Fitness was measured at baseline and after the study period for all study parameters. The two exercise groups performed the activities (either walking or t'ai chi) for 1 hour, 3 days per week, for a period of 12 weeks. The control group remained inactive.

At the end of the study, the t'ai chi group had significantly better improvements than the walking group in lower-extremity strength, balance and flexibility. In addition, the practice generally improved the other fitness measures.

T'ai chi is an ancient Chinese system of slow, flowing, meditative motion derived from the martial arts, and prior to that, the natural movements of birds and animals. Literally translated, tai means big or great and chi means ultimate energy.

T'ai chi can be practiced and enjoyed, regardless of physical capacity. It can even be practiced while sitting in a chair or reclining on the bed or floor.

Visit the MSF Lending Library and view our t'ai chi materials. Click http://www.msfocus.org/publication_lending.php?id=3.



THE EFFECTS OF VEGETABLES ON COGNITION
Eating three or more servings of vegetables daily may slow your mental decline by about 40 percent compared with someone who consumes few vegetables, according to a six-year study of about 3,000 Chicago residents age 65 or older. The study was conducted by Rush University Medical Center. Results were published in the in October 24 issue of Neurology.

When compared to people who ate less than one serving of vegetables daily, people who ate 2.8 or more serving of vegetables daily demonstrated a rate of cognitive decline equivalent to people five years younger. One serving of a vegetable is equal to about a cup.

The study also revealed that older people who started eating more than two servings of vegetables a day still showed a significant delay in mental decline, suggesting that it's likely never too late to reap the benefits of vegetable consumption.

The new findings follow two earlier studies, also conducted by Rush University Medical Center, indicating that the foods people eat may significantly affect their mental agility. Four years ago, Martha Clare Morris, chief of Rush University's Center for Healthy Aging, reported that eating foods high in vitamin E appeared to reduce the risk of Alzheimer's disease and last year, she found that eating fish had a similar effect.

Vegetables, especially those in the green, leafy category, are rich in antioxidant compounds like vitamin E, flavonoids and carotenoids.

Eating vegetables with olive oil, vegetable oil or some other type of poly- or mono-unsaturated fats, enhances the body's absorption of antioxidants, which help destroy cell-damaging free radicals, she added.

"When we controlled for all of those healthy lifestyle variables - physical exercise, age, sex, race, education, cognitive activity, participation - the effects of vegetables on cognition actually became stronger," Morris said.

Consuming lots of fruit did not appear to offer the same mental protection, although fruit has been associated with a wide variety of other health benefits.



LAST CHANCE FOR "FOCUS ON YOUR FEELINGS" HOLIDAY GIVEAWAY!
MSF and Hunter House Publications have teamed up to host a special "Focus On Your Feelings" Holiday Giveaway. Ten winners will receive a complimentary, autographed copy of MS & Your Feelings (Hunter House 2006) and also have their winning entries published on the MSF website, http://www.msfocus.org and the Hunter House website, http://www.hunterhouse.com.

MS and Your Feelings is written by Allison Shadday, a woman who lives with MS and who has counseled hundreds of people with the disease, Her book explores denial and acceptance, guilt and depression, psychological numbing, loneliness, and much more.

To enter our "Focus On Your Feelings" Holiday Giveaway, in 200 words or less, tell us about the emotional impact MS has had on your life. Whether you're finally moving from denial to acceptance, finding a way to manage depression, surviving a bitter breakup, or experiencing the loneliness and isolation that sometimes accompanies MS, we want to know! You may write in any style you wish, be it first-person essay, poetry or prose.

Entries must be submitted via email by December 1st. Those that exceed the 200-word limit will automatically be disqualified. Please include your name, age, city, state, telephone number or email address and the date of your MS diagnosis. Ten winning entries will be selected and contacted by December 15th. Send entries to editor@msfocus.org. Please type "Focus On Your Feelings" Holiday Giveaway in the subject line.



MS LINKED TO ABNORMAL LIVER TEST RESULTS
MS has been linked to abnormal liver test results, according to research findings from the MS Society of Canada. The study was published in the October 10 edition of Neurology.

These findings indicate that people with MS need to take extra care when using medications that might affect their liver and be alert to any possible symptoms of liver disease, according to Dr. Helen Tremlett, assistant professor at the University of British Columbia and lead researcher of the study.

"I would recommend people with MS have their liver tested as a routine part of their care when being treated with drugs known to affect the liver," Dr. Tremlett says. "In addition, people need to inform their doctor immediately if there is any presentation of liver disease symptoms."

Symptoms of liver disease include jaundice, or yellowing of the skin or yellowing of the whites of the eyes, itchy skin and unexpected fatigue.

The liver is an organ located on the right side of the body, under the lower ribcage. It stores and metabolizes energy, regulates fat storage and blood clotting, breaks down drugs and alcohol, aids in digestion, produces essential immune system factors, and more. Diseases of the liver include hepatitis and cirrhosis.

Researchers used data from the Sylvia Lawry Centre for MS Research in Germany, the largest database of MS clinical trial information in the world. Medical information from 813 people with MS, enrolled in various clinical trials from North America, Australia and Europe, was analyzed.

Over a two-year period, there was an over three-fold increased risk of a person with MS having an elevated liver test result compared to expectations, i.e., within a "normal range." An elevated test result indicates that liver enzymes have leaked out of their cells. This leakage into the blood stream may be an indicator of liver cell damage.

Over-the-counter medicines like acetaminophen or herbal remedies may cause elevated levels of liver enzymes in the blood. So, it is important that people with MS keep their doctor and pharmacist fully informed of all medicines being taken so that symptoms and test results are not misinterpreted.

An earlier study, also led by Dr. Tremlett, showed that the beta interferons - Avonex, Betaseron and Rebif - can increase the risk of liver problems. However, the current study examined those who were not on beta interferon treatment.

"Although beta interferons do further increase the risk of an elevated test, we know now that abnormal liver tests can result independent of this treatment," says Dr. Tremlett. "The next step is to determine why this is and hopefully add another piece to the complex puzzle that is MS."



LAST CALL FOR ADAPTIVE SKIING SCHOLARSHIPS
The Adaptive Sports Association (ASA), a non-profit, year-round sports and recreational organization dedicated to enhancing the well-being of people with disabilities, is offering the New Dimensions Scholarship for a snow-skiing program in Durango, Colorado. The deadline for applications is December 15th.

Scholarship winners will receive a trip to Durango to learn to snow ski! Round-trip transportation, five-nights lodging with Durango area host homes, most meals, accessible ground transportation, four days of adaptive ski instruction, lift tickets, equipment and private instruction are included!

For more information or to apply for a New Dimensions Scholarship, please call the ASA at 970-259-0374. Or visit http://www.asadurango.org/scholarships.html#newdimensions.



MEN CAN GET OSTEOPOROSIS, TOO
When people hear the word "osteoporosis," they generally think of calcium, broken bones, and women. But osteoporosis, a disease that reduces bone density and strength, making bones more vulnerable to fracture, affects men, too.

According to the National Osteoporosis Foundation, of the 10 million Americans estimated to have osteoporosis, eight million are women and two million - that's 20% - are men. Still, osteoporosis in men is under-recognized and under-treated.

Usually, osteoporosis is diagnosed after a person has broken a bone or taken a bone density test. But men are less likely than women to get this test - even after they've suffered a fracture or broken bone.

Risk factors associated with osteoporosis in men include:
· Prolonged exposure to certain medications that can affect bone density, particularly steroids or treatments for prostate cancer
· A fracture after the age of 50
· Having a first-degree relative who has osteoporosis or has suffered a fragility fracture
· Being underweight
· Low intake of calcium or a deficiency of vitamin D
· Excessive intake of caffeine
· Certain conditions, including endocrine disorders, gastrointestinal diseases, kidney disorders and low testosterone production
· A sedentary lifestyle
· Smoking and excessive alcohol consumption

The good news is that osteoporosis can be prevented. To reduce your risk, eat a balanced diet rich in calcium and vitamin D. Participate in weight-bearing exercises, such as walking, yoga or bike riding. Strive to stop smoking and drink alcohol in moderation. It's also important for men to discuss their bone health with their physicians.

To learn more about osteoporosis, visit the National Osteoporosis Foundation http://www.nof.org or the International Osteoporosis Foundation at http://www.iofbonehealth.org.



A WINTER'S WISH TO BENEFIT MS RESEARCH
This Christmas, help others with MS and get a beautiful holiday CD, perfect for gift-giving or as an addition to your own collection.

"A Winter's Wish," which can be purchased as a CD or full album download, includes 12 Christmas songs, including So This Is Christmas, recorded by Paul Nicholas, who joined us on our 5th Annual Cruise for a Cause!

Others songs, recorded by a variety of artists, include Do You Hear What I Hear, Jingle Bell Rock, O Holy Night, and many more.

Proceeds will go to the programs and services provided by the MSF, toward finding a cure for MS through the Montel Williams MS Foundation and a preventive vaccine for AIDS through the International AIDS Vaccine Initiative.

To learn more or to purchase "A Winter's Wish," go to http://www.airgomusic.com.



BETASERON APPROVED FOR CIS
The FDA has approved expanding the indication of Betaseron® (interferon beta-1b) to include individuals who have experienced a clinically isolated syndrome (CIS) consistent with MS.

CIS refers to a single clinical event indicative of demyelination, such as inflammation of the optic nerve or an episode of numbness, along with MRI findings consistent with MS.

This is the second therapy approved for treatment for those with CIS. In 2003, the FDA expanded the labeling of Avonex® (interferon beta-1a) to include this indication.

"Most MS centers look at the CIS patient and try to determine their future risk of developing MS," clarifies MSF Medical Advisor, Dr. Ben Thrower. "If the patient has brain MRI abnormalities or CSF oligoclonal bands (a pattern of banding seen in MS), we know they have a high risk of having more attacks in the future. If we decide to treat that person, we are doing so because we think they have early MS. I would argue that we did not really need studies to show that the interferon drugs work in such people. I would also argue that you should treat them with whatever you think is appropriate for early relapsing-remitting MS. With that said, I usually do not treat a CIS patient. I would discuss their MS risk with them and then encourage them to get a follow-up MRI in about three months. If the patient has a new lesion on MRI or a second relapse, then they have definite MS, not CIS with a risk of MS. I think that is an important distinction down the road when patients start wond!
ering if they really need to inje
themselves with medication."



MSF NEWS

MSF HOSTS 3RD ANNUAL NURSE SYMPOSIA
All MS nurses are cordially invited to join us for a Voyage to a Better Understanding of MS Care - a four-day Western Caribbean Cruise! This educational program will be held aboard Carnival Cruise Line's Imagination. We'll set sail from Miami on Thursday, March 8 and return on Monday, March 12th, 2007. Ports of call include Key West, Florida and Calica, Mexico.

This program will provide up to 13.2 contact hours through the Texas Nurses Association, an accredited approver of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation.

Presented by MS nurses from across the country, the educational curriculum will provide updated and pertinent information needed by nurses who provide care for patients with MS, including symptom management and other topics of relevance to the MS patient. The educational program will also prepare the nurse for the International Organization of Multiple Sclerosis Nurses (IOMSN) certification board examination and may also be applied to re-certification credits.

Space for this program is limited and passports are required. For more information call Fun Cruise & Travel toll-free at 888-826-9660, or visit http://www.funcruiseandtravel.com/msf2.htm.



NATIONAL MS EDUCATION & AWARENESS MONTH™
National MS Education & Awareness Month is rapidly approaching. There are so many ways that you, your friends, family members, and MS support groups can participate! Our theme this year is Lights, Camera, Action!

We have three international teleconferences and two webchats planned for the month, along with several regional events. Empower yourself by joining us for these unbiased educational programs. We will provide specific details soon.

MS Awareness Kits, filled with educational literature created for those with MS as well as their families and care partners, are free upon request. Simply send an email to awareness@msfocus.org.

We encourage you to take action during the month by planning a fundraiser, special event, or educational program in your community. If you need help getting started, call our Community Relations Department at 800-225-6495 or send an email to awareness@msfocus.org. If you have a website, newsletter, e-newsletter or blog, help us get the word out about National MS Education and Awareness Month. Do it for yourself. Or, do it for someone you know who is newly diagnosed. Whatever you do, play a part in Lights! Camera! Action!



2007 MSF CRUISE FOR A CAUSE TO ALASKA
The MSF Cruise for a Cause offers innovative, educational programs at sea for individuals with MS. This fun-filled adventure provides an opportunity to learn from renowned MS specialists, forge friendships with others with MS, and enjoy an infinite number of amenities, all aboard a luxury cruise ship!
This year, we will follow the Inside Passage from Seattle, Washington to Skagway, Alaska - 500 miles of crisp, clean air and unparalleled natural wonders!

Don't miss this seven-night adventure, from June 8th through the 15th, aboard Royal Caribbean's Vision of the Seas. Ports of call include Juneau, Skagway, Tracy Arm Fjord, Prince Rupert, British Columbia, and Seattle, Washington!

Passports required! For more information call Fun Cruise & Travel toll-free at 888-826-9660, or visit http://www.funcruiseandtravel.com/msf2.htm.

*****************************************************

**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 editor@msfocus.org. For support services, email support@msfocus.org. Please do not reply to this email address for correspondence.

You are receiving this newsletter because your email address was submitted to us for subscription on our web site. If you are receiving this email in error, or no longer wish to subscribe, or you wish to change your email address, please visit our subscription management page at




2 Comments:

Anonymous Anonymous said...

Your article Doctors Use Caution with Tysabri includes information from a previous Reuter's PR (about a month ago) based on a very poorly constructed and narrow survey.
As for doctor's willingness to prescribe Tysabri, I suggest you contact Dr Ted Phillips who is director of the Multiple Sclerosis Center at Texas Neurology in Dallas.
I would also suggest that you start posting some of the wonderful stories related to patients who are currently taking Tysabri.

4:05 AM  
Anonymous Anonymous said...

Your article "Doctors Use Caution with Tysabri" includes information by Reuter's which was published a month ago and is based on a VERY FLAWED survey.
As for comments from doctors re: Tysabri I suggest you contact Dr. Ted Phillips. He is a director of the Multiple Sclerosis Center at Texas Neurology in Dallas. He is an attending neurologist at Baylor University Medical Center in Dallas. He is clinical associate professor of neurology at the University of Texas Southwestern Medical Center and finally he is a principal developer of a national registry for MS (MSTRAC) and is a principal investigator in several ongoing clinical treatment trials in MS.
Finally, I would suggest you post or at least read some of the phenomenal success stories of patients who are taking Tysabri.
MSPatientsforChoice.org is a good source for this information.

4:16 AM  

Post a Comment

<< Home