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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, November 2, 2013

Patient Stories about their use with Tecfidera

November 1, 2013

Stu,

I started Tecfidera on May 18, 2013.  I was a little nervous, but was excited to start, so I started immediately.  Didn't want to wait and over think it. 

I switched from Betaseron and prior to that I was on Avonex.  I was diagnosed in 2006 at the age of 45. My sister was diagnosed before Betaseron was available and is still on Betaseron.  I think she was 30.

I started Tecfidera after dinner on May 18, 2013.  I really didn't want to wait until the next day.  Within 2hrs, I started flushing.  It felt REALLY hot.  Never felt anything like it before.  The flushing lasted only 1 hour though.  It stopped feeling extremely hot after about 20-30 min.  Not so bad!  I had a little itching too, but avoided scratching.  Again it was gone before I knew it!

That was the worst of it.  The next day, I ate breakfast, then took my 2nd dose.  Again, I turned red and hot, but only barely itched.  Again, the redness was gone within the hour.

It's six months later, and I still turn red about once a week.  Still no itching and it's gone within 30-40 minutes.

It is great!  NO MORE SHOTS, bruises at the injection sites or headaches!

No regrets...

Annette

apacarro@gmail.com
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I would love to write about my experience.  I have included a link to a Blog post I wrote about starting Tecfidera.


Marla Lutchen







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Friday, November 1, 2013

The New Healthcare Changes and You - Join us for a webinar on Nov. 20





You still have time to participate in the free 2013 National Disability Institute Financial Wellness Webinar Series for people living with MS!

While many people living with MS focus on their health, taking action to protect your financial well-being can be a challenge. That’s why the National Disability Institute created the Financial Wellness Webinar Series sponsored by Acorda Therapeutics with no cost to participate. This series is packed with how-to information about financial planning, savings, benefits, and employment strategies – all specifically for people living with MS and their families and other care partners. Each webinar is led by experts who understand the special needs and challenges that people living with MS can face when dealing with finances, employment and other issues. Together we can address those challenges and learn how to protect your financial future.

The next webinar, “The NEW Healthcare Changes and You,” will be held Wednesday, November 20th from 3:00 – 4:30 P.M. EST. There is no cost to participate, but advance registration is required and available at www.realeconomicimpact.org/financialwellness. You can access the webinar easily from your computer.


Everyone is talking about the new healthcare laws, but what does it mean for you and for anyone affected by MS? Experts will be on hand to discuss healthcare reform, the changes you can expect in your coverage and access to care, and how the new laws can affect your finances and your family.

Here’s a sample of feedback from previous webinar participants:

·         "Spot on in both issues and information provided."
·         “This was one of the most informative & productive webinars/seminars I've EVER attended!”
·         "I enjoyed the webinar and am sure many other people did too."
·         "The program was excellent."

National Disability Institute is a national non-profit organization dedicated to building a better economic future for people with disabilities by championing economic empowerment, financial education, asset development and financial stability. To view the complete 2013 webinar series schedule and access archives of past webinars, visit www.realeconomicimpact.org/financialwellness. You can also follow @RealEconImpact and the hashtag #FWFriday on Twitter for more information.

We look forward to your participation!




You are receiving this email because you are subscribed to MSViewsandNews.org. Your contact information has not been shared with Acorda Therapeutics or National Disability Institute. If you would like to unsubscribe your email address from this list, please contact info@msviewsandnews.org.


Transcranial Magnetic Stimulation (TMS) May Reduce Depression, Fatigue in MS Patients

COPENHAGEN, Denmark — Deep repetitive transcranial magnetic stimulation (TMS) of the motor cortex has the potential to reduce fatigue and depression in patients with multiple sclerosis (MS), a new study suggests.
The study was presented by Sven Schippling, University Medical Centre, Zurich, Switzerland, at the recent 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). 
He explained to Medscape Medical News that TMS is a noninvasive, safe technique for stimulation of brain regions that has been shown to be effective in major depression, autism, and schizophrenia but has not been investigated previously for fatigue and depression in MS. He noted that fatigue and depression are frequent symptoms in patients with MS, with two thirds of patients reporting fatigue as their most disabling symptom and depression occurring in more than half of patients.
Dr. Schippling and colleagues tested the TMS strategy on 2 different areas of the brain: the prefrontal cortex and the motor cortex. "We thought the prefrontal cortex would be the best area to target as it is more involved in depression, but to our surprise it turned out that the results for the motor cortex area were much better," Dr. Schippling commented.
He cautioned that this was a preliminary phase 1/2 study with small patient numbers, so any conclusions must be speculative but that the impressive results in the motor cortex group may be explained by easing the demands on that part of the brain when carrying out basic tasks.
"We know in MS patients, even from the earliest stages of the disease, recruit a much broader area of the brain than patients without the disease to achieve just a simple motor task," he said. "Giving exogenous stimulation to the key areas involved in motor tasks could reduce the area of the brain being taxed, so sparing energy."
The study involved -- CONTINUE READING

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Thursday, October 31, 2013

Antibody Index Test May Aid PML Diagnosis on Natalizumab

October 30, 2013

COPENHAGEN, Denmark — A new test that compares JC virus (JCV) antibody levels in cerebrospinal fluid (CSF) with those in serum might be a useful complementary tool in the diagnostic workup for progressive multifocal leukoencephalopathy (PML) in patients with multiple sclerosis (MS) treated with natalizumab (Tysabri, Biogen Idec), a new study suggests.
The study was presented by Clemens Warnke, MD, Heinrich Heine University, Düsseldorf, Germany, at the recent 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS). 
Dr. Warnke explained that PML caused by JCV can be difficult to diagnose because early symptoms can be mistaken for a relapse in MS.
"At present, JCV-DNA detection by polymerase chain reaction (PCR) in cerebrospinal fluid is used for diagnosis of PML. However, false-negatives often occur, leading to delayed diagnosis and poor patient outcome in some cases," he said. "So we need more tests to allow earlier diagnosis."
"Our main findings are when you have clinical suspicion of PML — changes in behavior, personality, and motor function untypical for MS in patients treated with natalizumab, we might suspect it to be PML," he told Medscape Medical News.

He and his colleagues have proposed using the anti-JCV antibody specificity index (ASI-JCV) as an additional test for JCV DNA detection. This involves measuring the JCV antibody level in both serum and CSF and calculating the proportion of antibodies in CSF compared with serum.

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New TECFIDERA Data Show Sustained Efficacy and Long-Term Safety in MS Patients

New TECFIDERA® (Dimethyl Fumarate) Data Show Sustained Efficacy and Long-Term Safety in a Broad Range of Multiple Sclerosis Patients
  • Interim Results from ENDORSE Extension Study Reinforce Favorable Safety Profile in Patients Treated for Up to Six and a Half Years
  • Analysis of Treatment-Naïve MS Patients Shows Positive Treatment Effects on Relapses, Disability Progression and MRI Outcomes
WESTON, Mass.--(BUSINESS WIRE)--Oct. 4, 2013-- Data presented today show that TECFIDERA® (dimethyl fumarate) continues to offer consistent and strong efficacy combined with a favorable safety profile in a broad range of patients with relapsing-remitting multiple sclerosis (RRMS), including those patients who are newly diagnosed with the disease. These data were presented by Biogen Idec (NASDAQ: BIIB) at the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) in Copenhagen, Denmark from 2-5 October.
Interim analyses from the ENDORSE long-term extension study show that TECFIDERA maintained its effect in reducing disease activity in patients treated for four years. No new or worsening safety signals were observed in patients who had received TECFIDERA for up to six and a half years. In addition, a separate post-hoc analysis of the Phase 3 DEFINE and CONFIRM clinical trials shows that TECFIDERA significantly reduced multiple sclerosis (MS) relapses in treatment-naïve patients, while delaying the overall progression of the disease over time.
Because MS is a chronic, life-long disease, physicians and patients need to know they are taking a treatment that will offer them sustained efficacy over the long-term with a consistent safety profile,said Doug Williams, executive vice president, Research and Development, Biogen Idec. These analyses provide important information on the benefits of TECFIDERA’s strong efficacy and favorable safety for a wide range of patients with RRMS – from those treating their MS for the first time to those who have been on TECFIDERA treatment for up to six and a half years.
ENDORSE Interim Clinical Efficacy and MRI Outcomes

ENDORSE is a global, dose-blind extension study to determine the long-term safety and efficacy of TECFIDERA (240 mg, dosed twice a day (BID) or three times a day (TID)). Patients who received two years of TECFIDERA in DEFINE and CONFIRM continued on the same dose in ENDORSE. Patients who previously received placebo or glatiramer acetate (GA; 20 mg subcutaneous daily injection; CONFIRM only) in DEFINE or CONFIRM were randomized 1:1 to TECFIDERA BID or TID. All currently enrolled patients included in the interim analyses had completed four years in the TECFIDERA clinical program (two years in DEFINE or CONFIRM plus two years in ENDORSE). At present, some patients have received TECFIDERA treatment for up to six and a half years.
Interim efficacy results found that patients who continued on TECFIDERA treatment in ENDORSE for two years experienced sustained clinical efficacy (as measured by relapse and disability progression endpoints), similar to what was observed after two years in DEFINE and CONFIRM. These patients also experienced a similarly low frequency of MRI lesions over four years (as measured by new or enlarging T2-hyperintense lesions; new non-enhancing T1-hypointense lesions; and gadolinium-enhanced (Gd+) lesions).
Patients initially randomized to placebo or GA in DEFINE or CONFIRM who then received TECFIDERA in ENDORSE showed clinical and MRI outcomes similar to those observed with TECFIDERA treatment in the pivotal studies.

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Genmab Announces Positive Top-Line Phase II Results of Ofatumumab in MS

October 10, 2013

Genmab Announces Positive Top-Line Phase II Results of Ofatumumab in Multiple Sclerosis
  • Treatment with ofatumumab showed significant reduction in the cumulative number of new brain lesions
  • No unexpected safety findings
Copenhagen, Denmark; October 10, 2013 — Genmab A/S (OMX: GEN) announced today top-line results from a Phase II study of the subcutaneous formulation of ofatumumab in relapsing-remitting multiple sclerosis (RRMS).
A total of 232 subjects with RRMS were randomized in the study. There was a clear separation from placebo on the cumulative number of new gadolinium enhancing lesions (active brain lesions) over a period of 12 weeks in subjects treated with all doses of ofatumumab compared to subjects treated with placebo [p < 0.001]. For the primary endpoint, analysis of data from weeks 0-12 estimated a 65% reduction in the cumulative number of new T1 gadolinium enhancing lesions for all doses [p < 0.001]. In weeks 4-12, analyses of data estimated a ≥ 90% reduction in the cumulative number of new T1 gadolinium enhancing lesions for all cumulative doses of ofatumumab ≥ 30 mg [p < 0.001].
There were no unexpected safety findings in the study. From weeks 0-12, injection related reactions were the most common adverse reaction and were observed in 52% of subjects receiving ofatumumab compared to 15% of subjects receiving placebo. There were five serious adverse events (SAEs) reported, all subjects received a 60 mg dose of ofatumumab and none of these subjects withdrew from the study. Twelve subjects withdrew during this time period; 10 of these subjects were receiving ofatumumab. To date, no cases of progressive multifocal leukoencephalopathy (PML) or opportunistic infections have been observed.
We are encouraged by the results from this study, which we believe underline the potential of subcutaneous ofatumumab for treatment of relapsing-remitting multiple sclerosis, said Jan van de Winkel, Ph.D., Chief Executive Officer of Genmab.
About the study

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Study Investigates Possible Environment Trigger for MS

A bacterium that may trigger multiple sclerosis has been identified by a research team from Weill Cornell Medical College and The Rockefeller University. Their study, published in PLoS ONE, is the first to identify the bacterium, Clostridium (C.) perfringens type B, in humans.

The scientists say their study is small and must be expanded before a definitive connection between the pathogen and MS can be made, but they also say their findings are so intriguing that they have already begun to work on new treatments for the disease.

"This bacterium produces a toxin that we normally think humans never encounter. That we identified this bacterium in a human is important enough, but the fact that it is present in MS patients is truly significant because the toxin targets the exact tissues damaged during the acute MS disease process," say the study's authors.

"Work is underway to test our hypothesis that the environmental trigger for MS lays within the microbiome, the ecosystem of bacteria that populates the gastrointestinal tract and other body habitats of MS patients."

The study describes discovery of C. perfringens type B in a 21-year-old woman who was experiencing a flare-up of her MS. The woman was part of the Harboring the Initial Trigger for MS (HITMS) observational trial. C. perfringens, found in soil, is one of the most common bacteria in the world. It is divided into five types. C. perfringens type A is commonly found in the human gastrointestinal tract and is believed to be largely harmless.

C. perfringens types B and D carry a gene (epsilon toxin) that emits a protoxin -- a non-active precursor form of the toxin -- which is turned into the potent "epsilon" toxin within the intestines of grazing animals. The epsilon toxin travels through the blood to the brain, where it damages brain blood vessels and myelin, the insulation protecting neurons, resulting in MS-like symptoms in the animals.

Researchers say they do not know how humans are infected with C. perfringens type B or D, but they are studying potential routes of exposure. The scientists are also in the first stages of investigating potential treatments against the pathogen.  A vaccine for humans is possible -- there is already a vaccine available for farm animals, but it requires repeat immunizations and they are also investigating the possibility of developing small-molecule drugs that prevent the toxin from binding to its receptor. Another approach is the development of a probiotic cocktail that delivers bacteria that compete with, and destroy, C. perfringens types B and D.


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Wednesday, October 30, 2013

Researchers from Italy Report that Skin Tissue May Hold Promise for Treating Multiple Sclerosis

NEW YORKOct. 29, 2013 /PRNewswire-USNewswire/ -- Researchers in Milan, Italy reported that stem cells derived from mouse skin tissue were able to reduce nervous system damage in mice with a disease similar to multiple sclerosis, offering further evidence for the possibility that stem cells from patients might in the future be used for cell therapy to treat MS. Thestudy, by Cecilia Laterza, Ph.D., Gianvito Martino, MD and colleagues at the San Raffaele Scientific Institute, Milan, and the University of Milan, was published today in Nature Communications.
The study was co-funded by the National Multiple Sclerosis Society, Multiple Sclerosis Italian Foundation (FISM), MIUR Lombardy Region (NetLips Project), ELA Foundation, BMW Italy and NEUROKINE network (EU Framework 7 ITNproject).
Current therapies for MS reduce the immune system attacks that damage the brain and spinal cord, but they are not effective in progressive phases of the disease, when damage to the protective myelin coating on nerve fibers and the nerve fibers themselves may be widespread. Finding ways to repair the nervous system to restore function is a major research priority.
For this study the team used mouse skin stem cells and forced them through "cell reprogramming" to become myelin-making cells. This technique allows differentiated (specialized) cells, such as skin cells, to become embryonic-like stem cells which can become any kind of cell, including neural stem cells, the stem cells of the brain.
As in previous studies of this type, after the cells were infused into the spinal cord, they promoted recovery in mice with the MS-like disease EAE (experimental autoimmune encephalomyelitis). Transplanted cells were able to reduce inflammation and protect the intact myelin from further damage, and were also able to foster the production of new myelin by the brain's own cells. The team further showed that the protective effect was mediated by a soluble factor released by the transplanted cells, called "leukemia inhibitory factor."
"Our discovery opens new therapeutic possibilities for multiple sclerosis patients because it might target the damage to myelin and nerves itself," stated study leader Dr. Gianvito Martino.
"This is an important step for stem cell therapeutics," noted Dr. Timothy Coetzee, Chief Research Officer of the National MS Society. "The hope is that skin or other cells from individuals with MS could one day be used as a source for reparative stem cells, which could then be transplanted back into the patient without the complications of graft rejection," he added.  
More work is needed, but this type of research gives hope that this strategy may eventually help restore lost function. Read more about research to repair the nervous system.
"There is still a long way to go before reaching clinical applications but we are getting there," said Dr. Martino. "We hope that our work will contribute to widen the therapeutic opportunities stem cells can offer to patients with multiple sclerosis."
"This is an important result for people with MS: rigorous basic science providing insights into the mechanisms involved in myelin and nerve damage is the only way to foster the discovery of new therapies for progressive forms of the disease," notedPaola Zaratin, Ph.D., Director of Scientific Research at the Italian MS Society/Italian MS Foundation.
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High Vitamin D Levels Associated with Low MS Disease Activity -

By By Jackie Syrop | October 21, 2013
Higher levels of 25-hydroxyvitamin D are correlated with less multiple sclerosis (MS) disease activity and progression, according to a study presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) 2013 meeting in Copenhagen.
 
Alberto Ascherio, MD, MPH, a professor of medicine at Brigham & Women’s Hospital and Harvard Medical School, presented data on 251 patients with 25-hydroxyvitamin D levels below 50 nanomoles per liter and 213 MS patients who had a higher level of 25-hydroxyvitamin D. Ascherio used the records of participants in the BENEFIT study, since the researchers from that trial collected data on baseline 25-hydroxyvitamin D for one year.

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Sunday, October 27, 2013

Emerging MS Treatment Therapies, Symptom Management and Energy Conserving Energy for the Holidays - a Free MS education program in Atlanta, Ga

RESERVATION REQUIRED to attend this event. See details shown below:


Presented By:
Ben W. Thrower M.D.
Medical Director, Andrew C. Carlos MS Institute - Shepherd Center
To discuss: Emerging MS Treatment Therapies, MS Relapse, Adherence,
Compliance & Symptom Management

and

Julie Huerbin, OT
(Occupational Therapist from the Shepherd Center)
To Present: Energy Conservation for the Holidays and Assistance Devices


Date: Saturday – November 9th, 2013
There is NO FEE to attend this program

11:00am - Registration
11:30am – Program Begins
Complimentary Luncheon

Location: Atlanta Marriott Northwest
200 Interstate North Parkway Atlanta, GA 30339‎


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R.S.V.P. Required
Register online at: www.events.msvn.org
If you do not have internet call: (203) 550-7703

Space is Limited to the Patient plus (1) Caregiver
Min Age is 16 – Unless this is a Pediatric MS patient



Program Sponsored with Unrestricted Grants from:
   and   




With Display exhibits provided by:

 




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Program Hosted By:  MS Views and News, a 501©(3) Not-For-Profit organization


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