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Disclaimer: 'MS Views and News' DOES NOT endorse any products or services found on this blog. It is up to you to seek advice from your healthcare provider. The intent of this blog 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.

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Saturday, February 6, 2010

Biogen Plans First Study For Earlier Use Of MS Drug Tysabri

   By Thomas Gryta     Of DOW JONES NEWSWIRES   

NEW YORK (Dow Jones)

Biogen Idec Inc. (BIIB) is planning the first clinical trial that could lead to use of controversial multiple sclerosis treatment Tysabri, sold with Elan Corp. (ELN), at earlier stages of the disease.

The long-term trial, dubbed Surpass, will measure the effectiveness of Tysabri in patients with active MS that have switched from either Teva Pharmaceutical Industries Ltd.'s (TEVA) Copaxone or Rebif, sold by Pfizer Inc. (PFE) and Germany's Merck KGaA (MRK.XE, MKGAY).

Tysabri is considered a highly effective therapy for MS, and its growth is important to the future of both Elan and Biogen. But its sales have been slower than originally hoped amid concerns about the risk of a rare brain infection that led to its 18-month market withdrawal beginning in 2005. The study comes after Tysabri brought in more than $1 billion in 2009, and it is part of Biogen's push to accelerate Tysabri's growth.

It also comes amid increased competition in MS treatments. Novartis AG (NVS, NOVN.VX) and Germany's Merck KGaA (MKGAY, MRK.XE) could launch oral treatments for the disease this year, a notable advance compared to the injections and infusions required with current drugs.

The goal of the Surpass trial is to get physicians to use Tysabri when patients aren't responding to their current therapy, rather than switching them to more mainstream therapies.

Beside Copaxone and Rebif, other common options include Biogen's Avonex and Bayer AG's (BAY.XE BAYRY) Betaseron, while Tysabri is generally reserved for patients with very aggressive disease or have no other options.

"We are trying to establish that there is no use in switching around [prior to using Tysabri]," Biogen spokeswoman Naomi Aoki. The company is signing up sites for the trial and has yet to enroll the first of an estimated 1,800 patients.

The study will follow participants for about two years and isn't likely to yield data until 2013 or 2014. If successful, the result should allow Biogen to update Tysabri's label and allow it to market the earlier use to physicians.

-By Thomas Gryta, Dow Jones Newswires; 212-416-2169; thomas.gryta@dowjones.com

Source: ADVFN


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Friday, February 5, 2010

AMPYRA for Multiple Sclerosis - Pricing that will benefit the MS Patient

Information found here was provided by Acorda Therapeutics
February 5, 2010

The wholesale acquisition cost is $1,065 per 30-day supply (one 60-count bottle).

What people will pay out-of-pocket will vary based on their insurance coverage, which won’t be determined until insurance companies finalize tiering, access, etc. (that timing varies from company to company, so we can’t give any kind of definitive date as to when that will be set).


A couple of points Acorda finds relevant to the pricing discussion:

o We are launching a comprehensive set of services to ensure broad access to AMPYRA for people with MS, all of which can be accessed through AMPYRA Patient Support Services (888-881-1918). This line is open now for anyone who wants to call with questions.

o Acorda’s goal is to ensure that cost is not a barrier to any person with MS who may benefit from this important medication, regardless of their level of income or healthcare coverage.

o Patients who meet income and other requirements, regardless of their insurance status, may receive AMPRYA at no cost. This may include individuals who have limited healthcare coverage.

o Acorda has also put a program in place to help individuals with private insurance manage their co-payment costs, where allowed by law. We will cover co-pay expenses over $40, regardless of income. My understanding is that Massachusetts is currently the only state that blocks this type of program.

o The support line will work with a person’s insurance company to facilitate access, and will also provide support on the appeals process if necessary.


Because AMPYRA is only approved in the U.S., we are restricted to offering these programs to U.S. residents

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The information found here was based upon questions presented to Acorda from Stuart Schlossman

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FDA warns of brain risks with frequent Tysabri use

ap



FDA finds connection between brain inflammation and frequent use of Tysabri
On Friday February 5, 2010, 12:53 pm EST

WASHINGTON (AP) -- Federal health officials warned doctors Friday that the risk of a deadly brain inflammation linked to the multiple sclerosis treatment Tysabri increases with use of the drug.

Tysabri has been plagued for years by rare cases of progressive multifocal leukoencephalopathy, or PML, which can cause swelling of the brain that is usually fatal. It is mostly seen in patients with immune deficiencies.

The biotech drug is marketed by Cambridge, Mass.-based Biogen Idec Inc. and Irish drugmaker Elan Corp. PLC, for multiple sclerosis and Crohn's disease.

The Food and Drug Administration said in a statement it has confirmed a total of 31 cases of PML since mid-2006. Eight of those patients have died, as of last month, according to the FDA. The agency posted updated labeling information for the drug to its Web site.

In the new labeling, FDA notes there have been no reports of PML in patients taking Tysabri for less than 12 months. In patients taking the drug for two to three years the rate of PML is one case per 1,000 patients.

The new labeling also warns of a complication of PML, known as Immune Reconstitution Inflammatory Syndrome, that can dramatically damage patients' health even after they have stopped taking Tysabri. The agency urges doctors to monitor patients for signs of inflammation.

Tysabri was approved in November 2004 and pulled from the market the next year due to PML reports. It was reintroduced in July 2006, and has been used by 66,000 people worldwide.


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Studying MS. Autoimmune or Vascular ? The BNAC - CCSVI Newsletter provides further information

Found here : A periodic newsletter from the Buffalo Neuroimaging Analysis Center

Written By: Dr. Robert Zivadinov, MD, PhD Director,
Buffalo Neuroimaging Analysis Center
February 4, 2010

My Friends,
I write to you today as researchers from the Buffalo Neuroimaging Analysis Center (BNAC) and the Jacobs Neurological Institute (JNI) at the University at Buffalo are completing their analysis of the first of several studies on chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis (MS). In a few weeks, we will announce the findings of CCSVI prevalence in the first 500 subjects, who participated in the study, Combined Transcranial and Extracranial Venous Doppler (CTEVD) evaluation in MS and related diseases.

Click here to continue to read the "BNAC" (Buffalo Neuroimaging Analysis Center's) newsletter on CCSVI and CTEVD and “Meet” One of the First 500 CTEVD Study Participants

Click the above link to read more on:
The CTEVD Study is a single-blinded study.
What does that mean?
During the study, the CTEVD researchers do not know the health condition of the study subject. What will happen when the study is unblinded in February 2010? At that time, the study subject’s medical history, identification number, and disease category will be available to the researchers for further analysis.

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Disclaimer: This article, and what I write/blog is not an endorsement of the information being discussed on CCSVI. While at the same time, I do not want you to think that I am against this research because surely I am not. All of us with MS seek a cure. If you have any questions concerning this new research, you need to either speak with your doctor or contact the BNAC or another research CCSVI facility

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If anybody in Florida is Considering hosting a MStery Party to help BNAC - please contact Linda Safran to help promote the event. For more information on MStery parties see the last page of the Bnac newsletter. There is a link to sign up as a MStery Party Host. http://msterypartyccsvi.bnac.net

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New Multiple Sclerosis treatment may end with Utah woman

I ask "WHY" stop? - Read the article and you will understand my question.


Reported by: Barbara Smith
Last Update: 2/04 10:20 pm


SALT LAKE CITY (ABC 4 News) At the end of November a young mother kissed her children goodbye, and boarded a flight with her husband. It was the beginning of a medical journey that she believes has ended with miraculous results. Michelle Colledge was treated for severe Multiple Sclerosis at Johns Hopkins, in BaltimoreMaryland. She is just one of 44 patients to receive the experimental High Dose Cyclophosphamide, and may be the last.

Michelle’s husband says his wife’s MS was so severe that several times he was told to prepare for her to die. Current medications available to treat Michelle had failed. Unwilling to give up hope, they researched until they found the work being done at Johns Hopkins. It was that discovery that Michelle Colledge says saved her life, and gave her life. “It feels miraculous to me. I feel like Lazarus rising from the dead. Like was dead, and a prisoner inside my own body and now I am living again.”

In order for Michelle to live, her immune system had to die. At Johns Hopkins, she says she received the High Dose Cyclophosphamide, an older and stronger form of chemotherapy. Thirteen liters, over a course of four days, killed all of her white blood cells. She says,” I like to think of them as assassins. So, they had these instructions that were not correct, that said the brain and the spine was the enemy. So, we killed all of those cells.” Her new immune system took about three weeks to grow. Adam Kaplin M.D, PhD, at Johns Hopkins explains, “It’s a resetting of the whole immune system and these people really genuinely have a new immune system.” That immune system has no memory of MS and no longer attacks the brain and spinal chord.



THEN, please return here to post your comments.
Write what you think of the lack of continuance for research...
Thank You


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Thursday, February 4, 2010

Multiple Sclerosis Gait issues - a two-part webinar

MS Learn Online Presents:


A two-part video webcast series that explores:

  • Symptoms that contribute to gait issues
  • Spasticity
  • Fatigue
  • Foot drop
  • Loss of balance
  • Managing gait issues
  • The role of a physiatrist
  • Research
  • Assistive devices



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"While In Rome- do as the Romans do" - MS Views and News is asking for help as others do



As mentioned in the subject of this posting, we (MS Views and News), like other Not for Profit organizations, need to continuously ask for public dollars. For us, it is to help offset basic needs. We do not like having to always ask, but we also need to exist and to do so, we need a steady stream of monthly contributions.

Sure, we know that we need access to Big Business sponsorships to improve our website and help cover the administrative operating costs of this
NPO, but we still need your help as well. Contributions from the "public" help to offset many other expenses.

'MS Views and News' is dedicated to the global collection and distribution of current information concerning Multiple Sclerosis. In collaboration with other organizations, 'MS Views and News' uses state-of-the-art communication channels to provide information for those affected by, or interested in MS.

Unique in what we do. Bridging the gap to all major MS Organizations. Providing information and resources from our website, daily via our blog and weekly by our e-newsletter (Stu's Views and MS Related News).

100% of the funds generated from our special events, grants, corporate gifts and planned giving go directly to supporting the vital services of MSV&N. Of course in today’s technological world, the need for our services is on the rise as people seem to have less time to search the internet and can simply rely on bookmarking the MS Views and News website , using our Blog or seeing our RSS feeds as they reach facebook and twitter, for all their learning and resourse needs of Multiple Sclerosis.

This is why we need to ensure that we have the funds to meet the needs of those who depend on the educational information we provide, by keeping our sites technologically up-to-date.

Your tax deductible contribution can be made by clicking here to donate online,

or by sending a check to:
MS Views and News, Inc. - 777 NW 72nd Ave. - * Suite 3005 * - Miami, Fl. 33126


Thank you for taking the time to review this message.

I look forward to answering any questions that you may have about our services.
You can write to me at: stuart@msviewsandnews.org

Have a great day!

Appreciatively,

Stuart Schlossman - RRMS
(yes, I too have MS)

MS Views and News is a 501©(3) organization as recognized by the Internal Revenue Service

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Oral Cladribine for Relapsing Multiple Sclerosis - Info on a Placebo-Controlled Study

Background Cladribine provides immunomodulation through selective targeting of lymphocyte subtypes. We report the results of a 96-week phase 3 trial of a short-course oral tablet therapy in patients with relapsing–remitting multiple sclerosis.


Conclusions Treatment with cladribine tablets significantly reduced relapse rates, the risk of disability progression, and MRI measures of disease activity at 96 weeks. The benefits need to be weighed against the risks. (ClinicalTrials.gov number,NCT00213135 [ClinicalTrials.gov] .)

To See Study: Method & Results and Source information click here

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Wednesday, February 3, 2010

AMPYRA for MS: Acorda Therapeutics Provides patient assistance program - (to help you walk better)

Feb 3, 2010 - The Medical News

Patient support information found below

Acorda Therapeutics, Inc. (Nasdaq: ACOR) today announced the wholesale acquisition cost (WAC) for AMPYRA™ (dalfampridine) Extended Release Tablets will be $1,056 per 30-day supply (60-count pill bottle), an annual cost of $12,850. AMPYRA was approved on January 22, 2010 by the U.S. Food and Drug Administration (FDA) as a treatment to improve walking in patients with multiple sclerosis (MS). This was demonstrated by an increase in walking speed. AMPYRA is expected to be available in March 2010.

“To that end, our assistance programs account for people who are unable to afford their medications but whose income or healthcare coverage often exclude them from other patient assistance programs. And regardless of income, people with private insurance can benefit from our co-pay program, wherever allowed by law.”

Acorda is launching a comprehensive set of services to ensure broad access to AMPYRA for people with MS, including patient assistance and co-pay programs that will be open as soon as AMPYRA is commercially available.

“AMPYRA is the first medication indicated to improve walking in people with MS, one of the most debilitating challenges associated with the disease. Acorda’s goal is to ensure that cost is not a barrier to any person with MS who may benefit from this important medication, regardless of their level of income or healthcare coverage,” said Ron Cohen, M.D., President and CEO of Acorda Therapeutics. “To that end, our assistance programs account for people who are unable to afford their medications but whose income or healthcare coverage often exclude them from other patient assistance programs. And regardless of income, people with private insurance can benefit from our co-pay program, wherever allowed by law.”

AMPYRA Patient Support Services

Acorda has established AMPYRA Patient Support Services, a dedicated resource for healthcare professionals and people with MS. Experienced customer care agents will be available to help healthcare professionals process prescriptions, work with insurance carriers to facilitate coverage, and direct patients to available assistance programs.

The AMPYRA patient assistance program is being managed by a third party organization with extensive experience in coordinating patient benefits. Patients who meet income and other requirements, regardless of their insurance status, may receive AMPRYA at no cost. This may include Individuals who have limited healthcare coverage.

Acorda has also put a program in place to help individuals with private insurance manage their co-payment costs, where allowed by law.

Healthcare professionals and people with MS can contact AMPYRA Patient Support Services at 888-881-1918 from 8:00 a.m. to 8:00 p.m. Eastern Time for more information about AMPYRA, and to learn more about the patient assistance and co-pay mitigation programs.

SOURCE Acorda Therapeutics


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Reflexology and Multiple Sclerosis

written By: , About.com Guide

I have had reflexology treatments in various settings and have always felt relaxed and refreshed for some time afterwards, which is always a great benefit, especially if you have multiple sclerosis. I have never asked the reflexologist to address a specific multiple sclerosis symptom, so I can’t report on that. I should warn that when I have had more severe tingling and numbness in my feet from the MS, the foot massages that I received during pedicures (or from my husband) felt a little strange and vaguely unpleasant, but that might just be me. If you want to try reflexology and are experiencing these types of sensory symptoms, mention them to the therapist and he or she may be able to adjust their techniques to make the experience better.

Reflexology is ideal if you want to try a complementary and alternative medicine (CAM) approach that is safe with very few side effects and enjoy a nice, long foot massage. It has also been shown to have a positive influence on certain MS symptoms (see "How Effective is it for MS?" below).

What is it?

Reflexology is a therapeutic technique from traditional Chinese medicine in which pressure is applied to the feet (and sometimes hands) without using oils or creams.

How is it Supposed to Work?

Reflexology is based on the theory that all of the body’s organs, glands and systems have corresponding points on the feet and hands, and that stimulating these points can increase circulation of blood and energy to improve the function of the body and increase health.
Click here to resume reading at: What Happens during Treatment.


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Could Teeth Brushing Impact MS?

Tuesday February 2, 2010

It is known that having "bad" bacteria in your body can cause the immune system to act up and (potentially) worsen autoimmune diseases. In multiple sclerosis, this could theoretically mean an increase in the severity of MS symptoms.To test this theory, researchers conducted an experiment with a common bacteria,Porphyromas gingivalis (the cause of "gingivitis").

It is known that these bacteria produce a lipid that can cause the immune system to "act up." The researchers injected the lipid into mice that had a "mouse version" of MS. The MS-like symptoms in the mice worsened after the lipid was injected.

Bottom line: While no "real life" conclusions can be drawn from this experiment, this may give us one more reason (among many) to maintain good oral hygiene.

Source: Nichols FC, Housley W, O'Conor C, Manning T, Wu S, Clark RB. Unique Lipids from a Common Human Bacterium Represent a New Class of TLR2 Ligands Capable of Enhancing Autoimmunity. Am J Pathol, 175: 2430-2438.

Link from ms.about.com


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Monday, February 1, 2010

MS related: Stem cell research and its ethical concerns

By Jocelyn Gurland - Issue date: Feb 2010

Elaine Fuchs, who works in the Laboratory of Mammalian Cell Biology and Development, spoke Friday in Packard and Lewis Laboratory on the development of stem cell research and its ethical concerns.

Stem cells are cells of the body that can self-regenerate and divide to make long-term stem cells. Fuchs explained that most cells of the body die, but stem cells are the only type of cell with the capability to continue to renew.

Nuclear transfer is one of the procedures Fuchs focuses on in her lab.

In this process, the nucleus of an unfertilized egg is removed, discarded and replaced with the nucleus of a skin cell. The cell is then reprogrammed and placed back into the body so it can regenerate.

Embryonic stem cells can generate cells for all tissues of the body, while adult stem cells can only generate a subset of tissues.

"Epidermis cells cannot make liver cells, just as liver cells cannot make epidermis cells," Fuchs said

"I am extremely pro-stem cell research because my mom has multiple sclerosis," Cassandra Tuttman, '13, said. "They believe that stem cells can help regenerate damaged myelin sheaths on neurons."

Read complete story by clicking here

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Sunday, January 31, 2010

Mobility in the workplace

Found in this months' MSFYi newsletter:

In a Harris Interactive survey of people with MS, 64 percent reported difficulty walking, loss of balance at least twice a week when walking, or inability to walk.

Among those who experienced difficulty walking, 44 percent had to take days off from work and two-thirds of those indicated this impairment was the most challenging aspect of their MS. The difficulty with walking was disruptive or very disruptive to their overall daily life, negatively impacted their ability to carry out daily tasks, and negatively affected their emotional health.


Yet 39 percent of those surveyed indicated they rarely or never discussed mobility issues with their physician. These impairments can affect quality of life in all areas, but especially in the workplace.


In the November 2009 issue of the International Journal of MS Care, many strategies to improving mobility in the workplace are given.


Exercise is one of the best methods of improving mobility, and it can be done in the workplace as well as at home. Simple exercises that can be done at work include:


Corner stretching (bracing forearms against corner walls and leaning into the corner) to stretch chest muscles that have tightened from prolonged sitting.


Standing at the desk area and leaning forward, or stretching at the restroom sink during breaks. This is good for spasticity.


Maintain good posture by keeping the chin level and gently pulling the chin straight in so the ears are directly over the shoulders, aligning the spine and posture.


Sitting and standing repeatedly, knee bends, raising the heels to stand on the toes and then back on the heels. These are good strengthening exercises.


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Mothers with MS Adapt to Parenting with Fatigue

From the MSFYi Newsletter

Mothers with MS may be managing fatigue in vastly different ways than well mothers or those with rheumatoid arthritis (RA), say researchers at East Carolina University. Debilitating fatigue is a common experience for people with MS, yet the fatigue that mothers with MS experience was not associated with their parenting.

In a study published in the December 2009 issue of Families, Systems, & Health, the impact of fatigue on mothers with MS was compared to mothers with RA, and well mothers in regard to three components: dealing with the typical daily hassles of parenting (e.g., children ignoring parental requests, struggles surrounding bedtime, or lack of privacy for parents), discipline styles (i.e., being lax or over-reactive in discipline), and monitoring the whereabouts of children.


“Since mothers with MS reported significantly more fatigue than well mothers and those with RA, we expected that fatigue would play a big role in the frequency and intensity of parenting daily hassles for mothers with MS, but we actually found that fatigue plays a small role for those we surveyed,” said Carmel White, one of the study’s authors.


The researchers surmise from this study and other studies that mothers with MS have learned to function in their role as a mother while experiencing regular fatigue by adjusting their expectations about parenting and/or their own parenting. For example, as observed in another research study, mothers with MS reported using more social support ( their partners or their parents), more self-preservation parenting (letting a child play by herself while the mother rests in the same room), and higher expectations of mature behavior from their children (explaining to their children that they are too tired to do an activity) to cope with fatigue while parenting.


Carmel White said, “Other studies with older children and mothers with chronic fatigue tell us that because fatigue is so prevalent in women with MS, many children can easily spot the symptom in their mother and, thus, may adjust their behavior to create less hassles for her. It might also be with these women that they have worked out an arrangement of sorts with their children centering on their level of fatigue.” It also appears that adequate sleep plays a critical role in managing parenting stress for mothers with MS.


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I Still Dream Big: Stories of Teens Living with Chronic Illness

For the benefit of Pediatric MS, I wanted to share the information found below, that may effect a Teen with MS. -

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One day you’re hanging out with friends, at the mall, playing basketball at school, dreaming about your latest crush, and the next you’re in a hospital hooked up to tubes and wondering if you’ll ever feel normal again. Getting sick is never a part of the plan.

I Still Dream Big: Stories of Teens Living with Chronic Illness shares the stories of seventeen young people living with different chronic illnesses. Lupus. Diabetes. Multiple Sclerosis. Crohn’s. Rheumatoid Arthritis. No matter what the diagnosis, these young people share an important thing in common—their lives have been changed dramatically by illness. In their own words, these young people share their feelings about things like friendship, dating, independence, coping with medications, and their concerns and hopes for the future. Everyday issues—made more complicated by a chronic illness.

The voices of the teens in this book are filled with tenacity and optimism despite the very real challenges they face. As eighteen-year-old Jamie says, “You define yourself, not something written in a medical chart. I Still Dream Big is a celebration of life and a reminder to all of us to hold onto our own dreams for the future—and to remember to DREAM BIG.

The book is available for purchase at www.amazon.com, at the publisher’s site, www.authorhouse.com , and at all major book outlets.

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