MS is a chronic disease that affects the nervous system. Nerves are coated in a protective covering called myelin, which also speeds up the transmission of nerve signals. People with MS experience progressive deterioration of myelin.
Friday
Promising New Treatments for MS: VIDEO
MS is a chronic disease that affects the nervous system. Nerves are coated in a protective covering called myelin, which also speeds up the transmission of nerve signals. People with MS experience progressive deterioration of myelin.
Wednesday
Sunday
MS Patients Show Better Gait and Balance with Ampyra (Dalfampridine) Treatment
Withdrawal/reinitiation study expands on known walking speed benefits of approved MS therapy
In a new study, researchers evaluated the effect of dalfampridine treatment in people with multiple sclerosis (MS) and observed significant improvements in not only walking speed and distance, but also in gait and balance. The paper, titled “Dalfampridine Effects Beyond Walking Speed in Multiple Sclerosis,” was published in the International Journal of MS Care.
Thursday
Fampyra: Multiple Sclerosis patient welcomes claims that HSE looks set to fund a miracle drug
Gerard Murphy at the Royal Hospital in Donnybrook, Dublin
A Multiple Sclerosis patient has welcomed claims that the HSE looks set to fund a miracle drug.
Monday
Multiple Sclerosis sufferer blasts 'cruel' HSE for refusing to make wonder drug Fampyra free
Gerard Murphy at the Royal Hospital in Donnybrook , Dublin
A Multiple Sclerosis sufferer who was the first in the country to avail of a trial wonder drug has blasted the “cruel” HSE for refusing to make it widely available for free.
Relationship Between Timed 25-Foot Walk Impairment and Diffusion Tensor Imaging Markers in Multiple Sclerosis: STUDY
Image source: http://article.wn.com/
Sunday
Wednesday
Denis Naughten, TD, believes Ireland should be a pilot country for State-funded multiple sclerosis drug
Denis Naughten, TD
The Health Service Executive has rejected a second application from the makers of a drug that helps people with multiple sclerosis to walk to have it covered by State-funded drug schemes.
Medicinal marijuana drug means end to buying drugs on the street
The signing off of the introduction of a medicinal marijuana product, Savitex, in Ireland has been welcomed by Tom Curran, partner of the late Marie Fleming.
Wow! It's no wonder MS is seen as a Cash Cow: THESE MS DRUGS BROUGHT IN THE MOST MONEY LAST YEAR
Teva soaring out in front on a single product and it is no surprise that the Generics pack are waiting in the rear ready for the copaxone patents to expire starting May 2014. However Biogen are backing the most winners with a staggering $5.8 billion worth of business. #2 Avonex Biogen Idec $3.0 billion
#3 Gilenya Novartis $1.9 billion
#4 Tysabri Biogen Idec $1.7 billion
#5 Betaseron Bayer $1.1 billion
#6 Tecfidera Biogen Idec $0.9 billion
#7 Rebif EMD serono $0.6 billion
#8 Ampyra Biogen Idec $0.3 billion
#9 Aubagio Sanofi $0.2 billion
#10 Extavia Novartis $0.2 billion
Tecfidera and Ampyra Show Potential for Quality of Life Improvement in Patients With MS
New disease-modifying drugs in multiple sclerosis (MS) show potential for improving quality-of-life (QoL) of patients with multiple sclerosis. The clinical benefits of dimethyl fumarate and PR-fampridine were discussed at a Biogen Idec-sponsored satellite symposium at the 29th Congress of the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS).
Saturday
NEUROLOGISTS NEED TO HAVE "HEIGHTENED VIGILANCE"
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NEUROLOGISTS NEED TO HAVE "HEIGHTENED VIGILANCE"
The knowledge that epilepsy and multiple sclerosis occur together more frequently than by chance should heighten vigilance for both when diagnosing or treating patients with either condition. For example, unexplained cognitive symptoms in a patient with multiple sclerosis may turn out to be partial complex seizures, whereas an episode of painful blurry vision in someone with epilepsy could indicate optic neuritis as the first symptom of multiple sclerosis. If seizures require treatment, an antiepileptic drug should be chosen that does not exacerbate preexisting symptoms of multiple sclerosis, such as ataxia, tremor or impaired cognition.
More research needs to be done to investigate the underlying reasons for the increased incidence of epilepsy in patients with multiple sclerosis, as well as an increased incidence of multiple sclerosis in patients with epilepsy. Inflammatory cortical demyelination in multiple sclerosis could cause neuronal loss and seizures. Could an inflammatory pathogenesis of epilepsy also lead to multiple sclerosis? As research continues to progress very rapidly in both of these disease states, maybe we won't have to wait long to find out.
Tuesday
AMPYRA IMPROVES STANDING BALANCE
Clinical Study
Oral Dalfampridine Improves Standing Balance Detected at Static Posturography in Multiple Sclerosis
Luca Prosperini,1 Costanza Giannì,1 Deborah Fortuna,2 Maria Rita Marchetti,2 and Carlo Pozzilli1
1MS Centre, Department of Neurology and Psychiatry, Sapienza University, Viale dell’Università , 30-00185 Rome, Italy
2Physical Therapy Unit, S. Andrea Hospital, via di Grottarossa, 1035-00189 Rome, Italy
Received 22 January 2014; Accepted 1 March 2014; Published 27 March 2014
Academic Editor: Francesco Patti
Copyright © 2014 Luca Prosperini et al. This is an open access article distributed under the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
Abstract
We report a 14-week post-marketing experience on 20 patients with multiple sclerosis (MS) who started prolonged-release (PR) oral dalfampridine 10 mg twice daily according to European Medicine Agency criteria. They underwent serial static posturography assessments and the dizziness handicap inventory (DHI) to investigate whether PR dalfampridine could impact standing balance and self-reported perception of balance. The incidence of accidental falls per person per month was also recorded throughout the study.
"Researchers don’t know why some multiple sclerosis therapies work"
Multiple sclerosis (MS) is a disease that attacks the nervous system causing an array of difficulties for those who suffer from it. From balance issues to visionproblems, from incontinence to cognitive difficulties, the disease can take several different paths for the millions who suffer from it all across the world. Progression of it can take longer for some but even then signs and symptoms themselves can also be different for many and this is one of those aspects of this disease that cause an incredible amount of confusion.
What is the most scary, is reading this sentence about the therapies that are suppose to slow the progression of the disease: They don’t know why [it] works, but….” With therapies like Copaxone and Tecfidera, there are many instances of those words spilling out into articles and after research, it is found to be true. They don’t know why they work.
After all these years and the millions of dollars that has been spent on studying this disease, scientists have found themselves being able to only pick a part of the disease, taking the gestalt of it (the whole) and micromanaging the various different areas. For instance, some work on the symptoms and how to help control them i.e. balancing issues and Ampyra or spasticity and baclofen and some work on trying to control the disease itself.
Researchers don’t know why some multiple sclerosis therapies work
Multiple sclerosis (MS) is a disease that attacks the nervous system causing an array of difficulties for those who suffer from it. From balance issues to vision problems, from incontinence to cognitive difficulties, the disease can take several different paths for the millions who suffer from it all across the world. Progression of it can take longer for some but even then signs and symptoms themselves can also be different for many and this is one of those aspects of this disease that cause an incredible amount of confusion.
What is the most scary, is reading this sentence about the therapies that are suppose to slow the progression of the disease: They don’t know why [it] works, but….” With therapies like Copaxone and Tecfidera, there are many instances of those words spilling out into articles and after research, it is found to be true. They don’t know why they work.
After all these years and the millions of dollars that has been spent on studying this disease, scientists have found themselves being able to only pick a part of the disease, taking the gestalt of it (the whole) and micromanaging the various different areas. For instance, some work on the symptoms and how to help control them i.e. balancing issues and Ampyra or spasticity and baclofen and some work on trying to control the disease itself.
Biogen Idec to Present New Clinical Data from Its Neurology Portfolio of Drugs at AAN Annual Meeting
CAMBRIDGE, Mass., Apr 14, 2014 (BUSINESS WIRE) -- Biogen Idec BIIB -0.18% will present more than 60 company-sponsored platform and poster presentations on data supporting its marketed and investigational therapies for neurological diseases at the 66th American Academy of Neurology (AAN) Annual Meeting in Philadelphia, April 26 – May 3, 2014. The scope and rigor of the data reflects Biogen Idec’s leadership in advancing neurological research and enhancing patient outcomes in multiple sclerosis (MS) and other diseases.
“For more than 20 years, Biogen Idec has been dedicated to improving the lives of people with MS,” said Alfred Sandrock, M.D., Ph.D., group senior vice president, and chief medical officer at Biogen Idec. “We have a broad portfolio and pipeline of innovative MS medicines, we perform important research that continues to advance our understanding of this disease, and we provide meaningful support services for people living with MS. The breadth of data we are presenting at AAN reinforces our enduring commitment to reducing the impact of MS and other serious neurodegenerative diseases.”
As part of its ongoing commitment to further understand the underlying causes of neurological disease, Biogen Idec is presenting new data to help patients and their healthcare providers make optimal treatment decisions and improve patient outcomes.
Central motor conduction time may predict response to Ampyra in patients with multiple sclerosis
Introduction
Most patients with multiple sclerosis (MS) experience walking impairment during the course of their disease. From an MS patient's perspective, walking ability is the most important bodily function.1 Currently, sustained-release oral fampridine (fampridine-SR) is the only drug approved for the symptomatic treatment of walking disability due to MS. Fampridine is a potassium channel blocker that improves the impaired axonal conduction associated with CNS demyelination.2However, only a subpopulation of MS patients with walking disability respond to fampridine.3Herein, we prospectively evaluated whether pre-therapy motor-evoked potentials (MEP), reflecting pyramidal demyelination by an increased central motor conduction time (CMCT), are suited as a predictive therapeutic response marker.
Methods
This prospective observational study was approved by the local ethics committee. Twenty-five patients with definite MS who were undergoing planned therapy with fampridine-SR for clinical reasons were recruited consecutively from our MS outpatient clinic from July 2012 to August 2013. Written informed consent was obtained from all participants. Five patients dropped out of the study due to adverse effects (n=3) or irregular drug intake (n=2); 20 patients were included for further analysis (see online supplementary table 1 for clinical characteristics).
Fampridine-SR 10 mg was administered to the patients twice daily. A timed 25-foot walk (T25FW, two times per measurement) and a timed 50 m walk were assessed before and 14 (range: 13–14) days after treatment initiation. Fampridine responders were prospectively defined by an improvement of >20% in both timed walks.4 However, as only three (15%) of the patients fulfilled this criterion, a posthoc analysis with an arbitrary response definition lowered to an improvement of >10% in both timed walks was added as to …
Story Source: The above story is based on materials provided by the JOURNAL OF NEUROLOGY, NEUROSURGERY & PSYCHIATRY.
Note: Materials may be edited for content and length
Study: AMPYRA IMPROVES WALKING FOR MSers
The objective of this paper is to determine the clinical tolerability and effects of dalfampridine on walking and community participation.
Our study supports the utility of this medication in late Multiple Sclerosis.
Source:
Oregon Health and Science University and Portland VA Medical Center, USA.
Abstract
BACKGROUND:
In short-term trials, dalfampridine extended release (ER) improves walking in people with multiple sclerosis (MS). The tolerability and effects of dalfampridine-ER in clinical practice have not been reported.
OBJECTIVES:
The objective of this paper is to determine the clinical tolerability and effects of dalfampridine on walking and community participation.METHODS:
All patients at the Portland VA Medical Center prescribed dalfampridine-ER over one year completed the Timed 25-Foot Walk (T25FW), Multiple Sclerosis Walking Scale-12 (MSWS-12), Two-Minute Timed Walk (2MTW), and Community Integration Questionnaire (CIQ) at baseline and follow-up clinic visits. Ongoing use and measures over one year were analyzed.CONCLUSIONS: Dalfampridine-ER was associated with short-term improvements in walking speed and community participation, and sustained improvements in walking endurance and self-perceived impact of MS on walking for one year. Our study supports the utility of this medication in late MS.
It's no wonder MS is seen as a Cash Cow: THESE MS DRUGS BROUGHT IN THE MOST MONEY LAST YEAR
#1 Glaterimer acetate Teva $4.3 billion
#2 Avonex Biogen Idec $3.0 billion
#3 Gilenya Novartis $1.9 billion
#4 Tysabri Biogen Idec $1.7 billion
#5 Betaseron Bayer $1.1 billion
#6 Tecfidera Biogen Idec $0.9 billion
#7 Rebif EMD serono $0.6 billion
#8 Ampyra Biogen Idec $0.3 billion
#9 Aubagio Sanofi $0.2 billion
#10 Extavia Novartis $0.2 billion
Interesting that sales of Extavia are so much lower than Betaseron, for what is essentially the same product in different packaging. This shows what brand loyalty and a bit of marketing can do.
#10. Extavia (interferon beta-1b)Sponsor/Developer: NovartisDosage strength, form, and frequency: Recommended dose is 0.25 mg injected subcutaneously every other day. Generally, start at .0625 mg (0.25 mL) subcutaneously every other day, and increase over a six week period to 0.25 mg (1 mL) every other dayMechanism of action: UnknownIndication: Relapsing forms of MS to reduce the frequency of clinical exacerbations2013 sales: $159 million
#9. Aubagio (teriflunomide)Sponsor/Developer: Genzyme (Sanofi)Dosage strength, form, and frequency: 7 mg and 14 mg tablets, once-daily, with or without foodMechanism of action: Pyrimidine synthesis inhibitorIndication: Relapsing forms of MS2013 sales: About $226 million (€166 million)1
#8. Ampyra (dalfampridine) / FampyraSponsor/Developer: Acorda Therapeutics and Biogen IdecDosage form and strength: 10 mg tabletsMechanism of action: Potassium channel blockerIndication: Improve walking in patients with MS2013 sales: $302.301 million
Jennifer Landry, Columnist, MSnewsChannel.com
(Stan is the Publisher of MSnewsChannel.com)
[JENNIFER]
I've been getting some HARD days Stan!! The hardest in my 20 years with ms. There was an overlap with my financial aid & I ran out of Ampyra on Sunday.
I've been on it since 2006-when it was still in clinical trial & have never been without it.
Don't know how long it'll take me to get back to my normal but the journey back has started.
My lesson learned: NEVER run out of Ampyra!
[STAN]
Tell us more about what happened when you ran out of Ampyra
[JENNIFER]
No problem! You're sweet, I needed that after the week i've been thru... Let's see, since no Ampyra: @ 1st I just needed help doing things i'd been able to do before: getting in & out of the bathroom mainly & have been unable to get in the car since Tues-driver or passenger. I normally live independently (in a scooter full time), w my kids w some help w cleaning, laundry, etc. i could do nothing. At one point-Wed afternoon I think I had to call the firefighters to get me off the couch & back on my scooter. Then by Wed night I could no longer get to the bathroom @ all, couldn't even use a stand alone 3-in-1 commode. That's when my sister bought me diapers. I had had several accidents by then. I also fell trying to transfer from scooter into bed & had to call my boyfriends again to get me up. On Wed my kids go to their dads but my son had the flu so stayed w me Wed night so I wouldn't b alone. By Thurs I knew I couldn't b home alone & my son needed to go to his dads. (On Wed I knew my funding had been approved & my Ampyra was due to arrive Fri via ups!) So Thurs mid morning my mom came w plans to stay till I was 'back to normal'. Thurs was a horrific roundtable of diaper changes & sitting around-mostly in my scooter as I was afraid to transfer to the couch by then. Fri comes & we're all just holding our breath waiting for ups. Finally comes around 1.30 & we're crying @ this point, tho having no idea how long it's gonna take me to get back to normal as i've never been off it since 2006. So I take 1 & lay down. Later yest evening I took another Ampyra. Well I woke @ 2am having to pee & did so in the diaper but didn't want to wake my mom to change it, so I proceed to do it myself! I thought 'give it a try' so I frikkin got onto my toilet!!! So... I take another Ampyra & proceed to dress myself. Mind u it's been a diaper & pj shorts since Wed. I go back to bed till 5.45, use the restroom & now i'm dressed & on the couch waiting for my mom to get up so I can shock the shit out of her :)!! After just 2 (well now 3) Ampyra my nightmare ordeal is over. It was a frightening realization of what my life might b like if not for Ampyra but one that'll I will never experience again cuz I will NEVER let myself run out of a medication apparently critical for my independence! And that's my Ampyra story. If you're on it NEVER run out & if you're not but have an idea it could make your life a little easier, walking or not, talk to your Neuro about trying it! For me, I now know, it's a miracle pill.
[STAN]
I'm confused Jennifer! I thought Ampyra was just for walking?
[JENNIFER]That's what it's called, The Walking Pill, but I haven't been able to walk since 2010 pretty much & I now know exactly what it does for me...it helps w overall nerve conduction so I can function & live indepently. Thx Stan! I'm just so lucky that we live in CA now & my sister lives 5 houses down & my mom's about a mile or 2 away. I could NOT have gotten thru this without them!!
Biogen Idec and UCB Enter Agreements to Commercialize Multiple Sclerosis and Hemophilia Therapies in Asia
Biogen Idec (NASDAQ: BIIB) and UCB (Euronext: UCB) announced today that they have signed exclusive agreements granting UCB the right to commercialize Biogen Idec products in South Korea, Hong Kong, Thailand, Singapore, Malaysia and Taiwan, and both develop and commercialize products in China. As part of the relationship, Biogen Idec will supply UCB with its portfolio of multiple sclerosis (MS) therapies and investigational candidates, including TECFIDERA®, FAMPYRA®, AVONEX®, TYSABRI®, PLEGRIDY TM and Daclizumab High-Yield Process (DAC HYP). The relationship also includes ELOCTATE TM and ALPROLIX TM, Biogen Idec's investigational long-acting recombinant candidates for hemophilia A and B, respectively. "Our goal is to bring our innovative therapies to patients around the world as quickly and efficiently as possible," said Carlos Dourado, Senior Vice President, Emerging Markets at Biogen Idec.
AMPYRA (dalfampridine) 2014 Net Sales Guidance of $328-$335 Million
READ MORE
Tecfidera and Ampyra Show Potential for Quality of Life Improvement in Patients With MS
Dimethyl fumarate is an enteric-coated microtablet which works to relieve oxidative stress, thus preventing axonal loss in the early stages of MS. This disease-modifying drug (DMD) was recently US Food and Drug Administration-approved and his marketed under the name, Tecfidera. Its efficacy was established in phase 2b and phase 3 studies. The primary end point of the phase 2b study was a reduction in total number of Gd+ lesions on MRI scans performed at weeks 12 to 24. Results in this study were favorable as they showed a 69% reduction.
Tecfidera & Ampyra Show Potential for Quality of Life Improvement in Patients With MS
New MS drugs ishow potential for improving quality of life of patients with multiple sclerosis.
STUDY: AMPYRA (Dalfampridine) improves walking speed, walking endurance, and community participation in veterans with multiple sclerosis: a longitudinal cohort study
Objectives: The objective of this paper is to determine the clinical tolerability and effects of dalfampridine on walking and community participation.
Methods: All patients at the Portland VA Medical Center prescribed dalfampridine-ER over one year completed the Timed 25-Foot Walk, Multiple Sclerosis Walking Scale-12, Two-Minute Timed Walk, and Community Integration Questionnaire (CIQ) at baseline and follow-up clinic visits.
Multiple Sclerosis Journal. published 7 October 2013,10.1177/1352458513507356
Michelle H. Cameron, Oregon Health and Science University and Portland VA Medical Center, 3181 SW Sam Jackson Park Road, L226, Portland, OR 97219, USA. Email: cameromi@ohsu.edu
READ FULL STORY
Treatment with dalfampridine (AMPYRA) resulted in clinically relevant improvements in walking speed and endurance in MS patients with limited ambulation and helped improve their motor function
RESULTS: Treatment with dalfampridine resulted in significant improvement in walking speed and endurance (p < 0.05). Walking speed increased by 33% and walking endurance by 31 %, representing clinically meaningful improvement. This change was
not influenced by change in muscle tone. This improvement in mobility was associated with a clinically significant change in motor function.
Adverse effects, including insomnia, dizziness, and headache, were experienced by five patients who discontinued the medication after a minimum of 4 weeks.CONCLUSION: Treatment with dalfampridine resulted in clinically relevant improvements in walking speed and endurance in MS patients with limited ambulation and helped improve their motor function
OBJECTIVE: The aim of this study was to determine the efficacy of sustained-release fampridine (4-aminopyridine) in veterans with multiple sclerosis (MS) with limited ambulatory ability, and its impact on motor function in an outpatient setting.
MAIN OUTCOME MEASURES: The primary outcome measures were mean changes in walking speed (10M walk test), walking distance (2MWT), and Total Functional Independence Measure (TFIM). Improvement of >20 % in walking speed was indicated as a clinically meaningful change.
VIDEO: Ampyra helps MS patients to walk again
http://www.msnbc.msn.com/id/21134540/vp/37375091#37375091
Acorda Therapeutics (Amprya) Recognized by National Organization for Rare Disorders for Contribution to Treatment of Multiple Sclerosis
Acorda Therapeutics, Inc. today announced the National Organization for Rare Disorders (NORD) is recognizing the Company for its efforts to develop therapies for rare diseases. Earlier this year, Acorda received approval from the U.S. Food and Drug Administration (FDA) for AMPYRA (dalfampridine) Extended Release Tablets, 10 mg, the first therapy to improve walking in people with multiple sclerosis (MS). This was demonstrated by an improvement in walking speed. The award will be presented tonight at the 2010 NORD Partners in Progress Gala in Washington, D.C.
"NORD plays a critical role in advocating for public policies that encourage public and private investment in development of therapies for rare diseases. This effort helps to ensure that patients with rare diseases have hope for future treatments," said Ron Cohen, M.D., President and CEO of Acorda Therapeutics. "NORD is also an invaluable resource for people affected by rare diseases, providing information, education and support services to patients, families, medical professionals, and the public. We are honored to be recognized by an organization that has made such important contributions to medicine and society."
"Multiple sclerosis is a progressive disease with devastating health consequences, and new treatment options are needed to improve the lives of people with MS," said Peter L. Saltonstall, President and CEO of NORD. "We commend Acorda for its commitment to bringing novel therapies to market for people with MS and other neurological diseases."
BERLENA HAS PHOTOS & AN AMAZING STORY ABOUT HOW AMPYRA HELPED HER WALKING ON HER CRUISE!
!
AND CLICK HERE TO READ 1000'S OF OTHER STORIES ABOUT OUR 2,700 Facebook FRIENDS LIKE BERLINA'S BELOW:
Stan, This is a comment my son made after looking at one of our pictures taken on the cruise ......... "Where did you take this?!?"! LOL! Very nice! I always enjoy hangin out with you and Pops...Broham (Pops) is finally coming around!...As for you, I'm so glad that you continue to take things in stride and don't let things stop you!....Just like a true Spencer!...Luv ya both!
Stan, as promised an update on my vacation. We took a 7 day Southern Caribbean cruise from San Juan, Puerto Rico. We went on 3 tours and I've never been on a cruise where transportation wasn't provided to get to the main shopping area after leaving the ship. Only one place had transportation and that was St. Maarten. The other ports we had to walk to the area. I usually walk along with my husband, but there were times I ventured to some stores alone.
This I've never done before. The steps on the ship to get to the upper deck I usually don't do, but every port we went into and when we got ready to sail away, I climbed the steps and went to the top deck.
I guess I'm rambling on, but the point I'm getting to is that I know Ampyra is working because I never would have been able to walk as much as I did on our cruise if I weren't taking it.
My son took a picture of me going up the steps, and my daughter-in-law commented on how I was coming up the steps. I took a 1/2 provigil for 3 days to be able to stay awake longer, but that was it. It was hot, but I was able to deal with it, just made sure I stayed hydrated.
I still use my cane, and I'm not able to run a marathon, probably couldn't anyway at my age, but I'm so thankful for the change I've noticed since starting ampyra.
When we got back, my son called to check on us, and he said once again that he and his wife had talked about how my mobility has improved.
This Saturday will be 8 weeks since starting ampyra. So far there has been no side effects, and there's definitely speed in my walking.
This I've never done before. The steps on the ship to get to the upper deck I usually don't do, but every port we went into and when we got ready to sail away, I climbed the steps and went to the top deck.
I guess I'm rambling on, but the point I'm getting to is that I know Ampyra is working because I never would have been able to walk as much as I did on our cruise if I weren't taking it.
My son took a picture of me going up the steps, and my daughter-in-law commented on how I was coming up the steps. I took a 1/2 provigil for 3 days to be able to stay awake longer, but that was it. It was hot, but I was able to deal with it, just made sure I stayed hydrated.
I still use my cane, and I'm not able to run a marathon, probably couldn't anyway at my age, but I'm so thankful for the change I've noticed since starting ampyra.
When we got back, my son called to check on us, and he said once again that he and his wife had talked about how my mobility has improved.
This Saturday will be 8 weeks since starting ampyra. So far there has been no side effects, and there's definitely speed in my walking.
Extension Data Show Dalfampridine (Amprya) Continues to be Beneficial in Multiple Sclerosis
New open-label extension numbers of dalfampridine extended release suggest the drug continues to improve walking speed in some patients with no new safety signals.
Presenting at the American Academy of Neurology 62nd Annual Meeting, Andrew Goodman, MD, from the University of Rochester, New York, reported improvements in some people for up to 2.5 years.
"Walking is such an important issue for patients with multiple sclerosis," he said. "Patients who have difficulty getting around have more trouble functioning and may not be able to work."
Dr. Burks points out current therapies are designed to halt disease progression but do not reverse symptoms. "With this, we have an improvement in walking speed, which is something we've never seen before.
The new potassium channel blocker was approved by the US Food and Drug Administration in January. It is marketed by Acorda Therapeutics under the brand name Ampyra. Biogen Idec is overseeing the product outside the United States.
Studies have shown that patients treated with dalfampridine, 10 mg twice daily, improve on timed 25-ft walks. It is the first drug with an indication to improve walking speed in multiple sclerosis.
The Answers to Frequently Asked Questions About Ampyra
Q. What is Ampyra? (pronounced amPEERah)
A. Ampyra, formerly known as fampridine SR, is a tablet containing a
sustained-release formula of 4-aminopyridine, which blocks tiny pores,
or potassium channels, on the surface of nerve fibers. This blocking
ability may improve the conduction of nerve signals in nerve fibers
whose insulating myelin coating has been damaged by MS. The first
studies of this potassium-blocking approach in people with MS were
supported by the National MS Society.
Q. How is a ?symptomatic therapy? different from the approved disease-
modifying therapies for MS?
A. A symptomatic therapy is usually a drug that addresses a particular
aspect of a disease, but taking it does not change the underlying
course of the disease or limit the damage caused by the disease. There
are many medications taken by people with MS to manage specific
symptoms, such as spasticity, fatigue or depression. While there are
FDA-approved disease-modifying therapies that are partially effective
against some forms of the disease, as well as rehabilitation and
symptomatic treatments for some symptoms, until now there was no
pharmacologic treatment available for MS-related difficulty walking.
Q. How common are walking problems among people with MS?
A. A recent survey among more than 1,000 individuals with MS and many
of their family members examined the impact of difficulty walking on
quality of life among people with MS and their families. Some two-
thirds of patients reported difficulty walking and of these, 70%
reported that such difficulty was the most challenging part of their
MS, and most reported that difficulty walking restricts their daily
activities significantly, including their ability to travel. (Read
more about survey results)
AAN:Acorda’s Ampyra Runs Ahead of Other Multiple Sclerosis Treatments
From the article, "Ampyra is a new class of drug that isn’t made to slow the progression of MS like the other drugs on the market, but is meant to treat one of its most debilitating symptoms."
Research Advocate: Ampyra Approved by FDA to Improve Walking for People with Multiple Sclerosis
This article on the NMSS's website has the phone number to call for info on Ampyra, how the medication works, the possible side effects and the cost.
The web page also has information on Benign MS, CCSVI, and migraines.
This web site also has more info on Ampyra.
New Multiple Sclerosis drug culminates researchers’ long journey-Ampyra
When it became available for prescription this month, a drug heralded as the first medicine to treat the symptoms of multiple sclerosis ( Poster's note:Clarification- Ampyra is the first oral medication said to improve walking speed and leg strength. It's not the first medicine to treat the symptoms of MS.) stirred hope among thousands who suffer from the degenerative illness.For some, it held out the promise of resuming basic tasks like walking to the office copy machine without having to plan ahead. For others, the possibility of running again.For Floyd Davis, the new drug, called Ampyra, delivered relief and satisfaction of a different sort.
Clinical Benefit of Multiple Sclerosis Drug Discovered
Drug approved by the FDA in January, now available in the U.S.
A drug whose clinical benefit in treating multiple sclerosis was discovered at Rush University Medical Center was approved by the Food and Drug Administration on January 22 and is now available in the U.S.
"the neuro said he will start me on Ampyra, the walking drug-Im optimistic for that because if it works that would be AMAZING"
Hi Stan! When I went to the neuro last week..he also said he will start me on Ampyra, the walking drug when he gets the samples in (probably 4-6 months) I wanted to share this info with our Angels!
I am optimistic for that because if it works that would be AMAZING!!!!
He said that for people like me where the majority of the disease is in the spine it looks very promising.
He said if you just looked at my brain scan you would say I had a mild case of MS, my back is what is disabling me.
He said the ampyra seems to help the nerve conduction to the legs and makes walking less difficult.
He is trying to find a rep to get some samples for me so I can try it for a few weeks first because it will be expensive. He also said there is not a formulary yet but that should be coming to him in a few months.
He did say that the one drawback is that in some people it can cause seizures so that is something to be concerned about.
Anyway, hello and hugs to everyone. Hope it's a good spring for all!
♥ ginny
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Ampyra is First Symptom Management Drug Developed Specifically to Treat MS, the First Oral MS Therapy Approved for MS, and the First New FDA Approved
The U.S. Food and Drug Administration has approved the marketing of Ampyra™ (dalfampridine, formerly known as fampridine SR, from Acorda Therapeutics) for its ability to improve walking speed in people with any type of multiple sclerosis.
Note: Click on read full article to the right of the title on the website.
Note: Click on read full article to the right of the title on the website.
Acorda Therapeutics Announces Filing of Patent Extension Applications for AMPYRA™ (dalfampridine)
Acorda Therapeutics, Inc. (Nasdaq:ACOR) today announced that the Company has submitted applications to extend patent protection for AMPYRA™ (dalfampridine) Extended Release Tablets, 10 mg to the United States Patent and Trademark Office (USPTO).
Acorda deals MS med direct to patients
Acorda Therapeutics is taking a novel approach to selling Ampyra, a treatment for multiple sclerosis. Designed to help MS patients walk, the drug won't be distributed through drugstores or even through doctors' offices. Patients will order it directly from the company.
To read the full story, click here.
An upbeat MS update
As part of its ongoing campaign to raise awareness about multiple sclerosis, the National MS Society has enlisted a camera crew--three people with MS--to create weekly videos featuring folks from across the nation who also have the autoimmune disease. Log on to the We Keep Moving Web site and you can vote for one of three candidates to be the program's s next subject.
Read the rest of the article on the Washington Post click here.
Read the rest of the article on the Washington Post click here.
MS Learn Online with videos on Ampyra, Med. Marijuana, etc.
"There are lots of great videos on this MS Learn Online series about Medical Marijuana, Ampyra, Yoga, Tai Chi, Relaxation Methods, various rehab options, and side effects of corticosteroids. See all the videos on the right side of the page."
http://article.wn.com/view/2010/03/06/FDA_Approves_Ampyra_to_Improve_Walking_in_Adults_with_Multip/
http://article.wn.com/view/2010/03/06/FDA_Approves_Ampyra_to_Improve_Walking_in_Adults_with_Multip/
Ampyra (the new walking pill) - Acorda Therapeutics Webcast
Acorda Therapeutics, the company that developed and is now marketing AMPYRA (dalfampridine) in the U.S., is hosting a webcast for MS bloggers on Wednesday, March 17 and our own Jennifer Landry has been invited to attend. Acorda’s senior leadership team, including their CEO Ron Cohen (above), are providing an overview of AMPYRA, including the clinical trial data and information on pricing and insurance. Most importantly, they are also taking questions from the attendees.
MS News Channel will be posting updates following the webcast, so stay tuned.
MS News Channel will be posting updates following the webcast, so stay tuned.
New Multiple Sclerosis Drug
Multiple Sclerosis is a disease that weakens your body, affects your balance, and senses. But this disease varies from patient to patient. Now, doctors say there is a new drug called Ampyra that will help improve the speed a person with MS can walk.
To read the rest of the article and watch the video click here.
To read the rest of the article and watch the video click here.
Acorda launches Ampyra ER tablets in US & Puerto Rico
Acorda Therapeutics, Inc announced that Ampyra (dalfampridine) Extended Release tablets, 10 mg is now available by prescription in the United States and Puerto Rico. Ampyra was approved on January 22, 2010 by the US Food and Drug Administration (FDA) as a treatment to improve walking in patients with multiple sclerosis (MS).
Read the rest of the article here.
Read the rest of the article here.
New drug could improve walking ability of people with multiple sclerosis
NAPLES — Jeff Cooperstein is waiting for his Naples pharmacy to get a new drug for multiple sclerosis that can improve walking ability of people with the disease.
He fully expects a battle with his insurance carrier over the cost of the drug, Ampyra, which will run him $600 a month.
“It is kind of my forte now,” the 54-year-old retired Pittsburgh police officer, said. “I’ll fight to get it covered but it has to be worth it. I’m anxious to try it.”
His local neurologist, Dr. Matthew Baker, who is treating 300 patients with MS at Collier Neurologic, was told by the manufacturer that Ampyra would be available this month.
The timing would be a boost for people with MS and their support organizations which are conducting fundraisers this month.
“It is kind of my forte now,” the 54-year-old retired Pittsburgh police officer, said. “I’ll fight to get it covered but it has to be worth it. I’m anxious to try it.”
His local neurologist, Dr. Matthew Baker, who is treating 300 patients with MS at Collier Neurologic, was told by the manufacturer that Ampyra would be available this month.
The timing would be a boost for people with MS and their support organizations which are conducting fundraisers this month.
Read the rest of this article here.
Drug helps MS patients with mobility problems
"At $1,000 a month this may be an obstacle in getting insurance companies to approve it. I like that there's a video along with this article showing someone who's been on it for the past 6 years (through the clinical trials) walking better."
Trouble walking is one of the biggest challenges faced by people with the neurological disease multiple sclerosis.
The Food and Drug Administration recently approved an oral medication to help people improve their walking speed - an encouraging development in the MS community.
To read the rest of the article and see the video on abclocal.go.com click here.
NMSS Video on Ampyra,New MS "Walking" Drug
The National Multiple Sclerosis Society has released a video featuring the noted neurologist Dr. Patricia Coyle, answering questions on Ampyra, a recently approved drug that's meant to increase the mobility of MS patients by increasing the conductivity of damaged nerve cells.Click here to read the rest of the article and see the video on wheelchairkamikaze.com.
MS Drug Ampyra Gets FDA Nod
Ampyra Improves Walking in Many Multiple Sclerosis Patients
Jan. 22, 2010 - The FDA has approved Ampyra (dalfampridine), which improves walking ability in adults with multiple sclerosis (MS). ...Read the full report in WebMD
Jan. 22, 2010 - The FDA has approved Ampyra (dalfampridine), which improves walking ability in adults with multiple sclerosis (MS). ...Read the full report in WebMD
New Oral MS Drug
Finally a drug to really help multiple sclerosis patients. Doctors here in Chicago were the first to test it back in the 1980's. This month the FDA moved to approve it...and doctors say it will help MS patients from this day forward.
"Let me see your knee reflexes..Good."
It wasn't always that way for Steve Wine. It seemed his function was bad and kept getting worse.
Read the rest of the article here on wgntv.com.
Saturday
Jennifer Landry, Columnist, MSnewsChannel.com
My Column today is about how I STOPPED TAKING AMPYRA! I now know exactly what it does for me...it helps w overall nerve conduction so I can function & live independently.
(Stan is the Publisher of MSnewsChannel.com)
[JENNIFER]
I've been getting some HARD days Stan!! The hardest in my 20 years with ms. There was an overlap with my financial aid & I ran out of Ampyra on Sunday.
I've been on it since 2006-when it was still in clinical trial & have never been without it.
Don't know how long it'll take me to get back to my normal but the journey back has started.
My lesson learned: NEVER run out of Ampyra!
[STAN]
Tell us more about what happened when you ran out of Ampyra
[JENNIFER]
No problem! You're sweet, I needed that after the week i've been thru... Let's see, since no Ampyra: @ 1st I just needed help doing things i'd been able to do before: getting in & out of the bathroom mainly & have been unable to get in the car since Tues-driver or passenger. I normally live independently (in a scooter full time), w my kids w some help w cleaning, laundry, etc. i could do nothing. At one point-Wed afternoon I think I had to call the firefighters to get me off the couch & back on my scooter. Then by Wed night I could no longer get to the bathroom @ all, couldn't even use a stand alone 3-in-1 commode. That's when my sister bought me diapers. I had had several accidents by then. I also fell trying to transfer from scooter into bed & had to call my boyfriends again to get me up. On Wed my kids go to their dads but my son had the flu so stayed w me Wed night so I wouldn't b alone. By Thurs I knew I couldn't b home alone & my son needed to go to his dads. (On Wed I knew my funding had been approved & my Ampyra was due to arrive Fri via ups!) So Thurs mid morning my mom came w plans to stay till I was 'back to normal'. Thurs was a horrific roundtable of diaper changes & sitting around-mostly in my scooter as I was afraid to transfer to the couch by then. Fri comes & we're all just holding our breath waiting for ups. Finally comes around 1.30 & we're crying @ this point, tho having no idea how long it's gonna take me to get back to normal as i've never been off it since 2006. So I take 1 & lay down. Later yest evening I took another Ampyra. Well I woke @ 2am having to pee & did so in the diaper but didn't want to wake my mom to change it, so I proceed to do it myself! I thought 'give it a try' so I frikkin got onto my toilet!!! So... I take another Ampyra & proceed to dress myself. Mind u it's been a diaper & pj shorts since Wed. I go back to bed till 5.45, use the restroom & now i'm dressed & on the couch waiting for my mom to get up so I can shock the shit out of her :)!! After just 2 (well now 3) Ampyra my nightmare ordeal is over. It was a frightening realization of what my life might b like if not for Ampyra but one that'll I will never experience again cuz I will NEVER let myself run out of a medication apparently critical for my independence! And that's my Ampyra story. If you're on it NEVER run out & if you're not but have an idea it could make your life a little easier, walking or not, talk to your Neuro about trying it! For me, I now know, it's a miracle pill.
[STAN]
I'm confused Jennifer! I thought Ampyra was just for walking?
[JENNIFER]That's what it's called, The Walking Pill, but I haven't been able to walk since 2010 pretty much & I now know exactly what it does for me...it helps w overall nerve conduction so I can function & live indepently. Thx Stan! I'm just so lucky that we live in CA now & my sister lives 5 houses down & my mom's about a mile or 2 away. I could NOT have gotten thru this without them!!
Tuesday
AMPYRA IMPROVES WALKING SPEED, WALKING ENDURANCE & COMMUNITY PARTICIPATION IN VETRANS WITH MULTIPLE SCLEROSIS (a longitudinal cohort study)
Mult Scler. 2013 Oct 7.
Source:
Oregon Health and Science University and Portland VA Medical Center, USA.
Abstract
BACKGROUND:
In
short-term trials, dalfampridine extended release (ER) improves walking
in people with multiple sclerosis (MS). The tolerability and effects of
dalfampridine-ER in clinical practice have not been reported.
OBJECTIVES:
The objective of this paper is to determine the clinical tolerability and effects of dalfampridine on walking and community participation.METHODS:
All patients at the Portland VA Medical Center prescribed dalfampridine-ER over one year completed the Timed 25-Foot Walk (T25FW), Multiple Sclerosis Walking Scale-12 (MSWS-12), Two-Minute Timed Walk (2MTW), and Community Integration Questionnaire (CIQ) at baseline and follow-up clinic visits. Ongoing use and measures over one year were analyzed.CONCLUSIONS: Dalfampridine-ER was associated with short-term improvements in walking speed and community participation, and sustained improvements in walking endurance and self-perceived impact of MS on walking for one year. Our study supports the utility of this medication in late MS.
Saturday
Treatment with dalfampridine (AMPYRA) resulted in clinically relevant improvements in walking speed and endurance in MS patients with limited ambulation and helped improve their motor function
RESULTS: Treatment with dalfampridine resulted in significant improvement in walking speed and endurance (p < 0.05). Walking speed increased by 33% and walking endurance by 31 %, representing clinically meaningful improvement. This change was
not influenced by change in muscle tone. This improvement in mobility was associated with a clinically significant change in motor function.
ECTRIMS UPDATE #2: BIOGEN HAS 3 NEW MS TREATMENTS THEY ARE WORKING ON THAT ARE BEING PRESENTED AT ECTRIMS: THE WORLDWIDE MEETING OF NEUROLOGISTS:
Data at The ECTRIMS Meetings will be presented from across Biogen Idec’s portfolio, including:
Investigational medicines:
PLEGRIDY(pegylated interferon beta-1a): a potential new molecular entity for relapsing forms of MS in which interferon beta-1a is pegylated to extend its half-life and prolong its exposure in the body. Pegylation offers a less-frequent dosing schedule.
DACLIZUMAB HIGH-YIELD PROCESS (DAC HYP): is being developed as a once-monthly subcutaneous injection. DAC HYP is believed to target the activated immune cells that can play a key role in MS without causing general immune cell depletion. DAC HYP is being developed under a collaboration agreement with AbbVie, Inc.
Anti-LINGO-1 (BIIB033): is the first candidate being investigated for its potential to repair neurons damaged by MS.
Approved medicines:
TYSABRI® (natalizumab): offers established efficacy that has been proven to reduce relapses and slow disability progression.
TECFIDERA® (dimethyl fumarate): an oral treatment for relapsing forms of MS, including relapsing-remitting MS (RRMS), which has been clinically proven to significantly reduce important measures of disease activity with a favorable safety/tolerability profile. TECFIDERA is currently approved in the United States, Canada and Australia.
FAMPYRA® (prolonged-release fampridine tablets): the first approved treatment to address the unmet medical need of walking improvement in MS patients, demonstrating efficacy in patients with all MS types. Approved in the European Union.
The titles of key Biogen Idec abstracts are as follows:
TYSABRI:
October 3
Poster #519: Effects of natalizumab treatment on freedom from disease activity by baseline characteristics in AFFIRM
Poster #524: Natalizumab reduces the disabling amplitude of multiple sclerosis relapses and improves post-relapse residual disability
October 4
Poster #1050: Disease activity and disability progression decrease beyond two years on natalizumab in relapsing multiple sclerosis patients in the TYSABRI® (natalizumab) Observational Programme
TECFIDERA:
October 3
Poster #538: 4-year follow-up of oral BG-12 (dimethyl fumarate) treatment in relapsing remitting multiple sclerosis (RRMS): integrated clinical efficacy data from the DEFINE, CONFIRM, and ENDORSE studies
October 4
Poster #1004: 4-year follow-up of oral BG-12 (dimethyl fumarate) treatment in relapsing remitting multiple sclerosis (RRMS): integrated magnetic resonance imaging (MRI) outcomes from DEFINE, CONFIRM, and ENDORSE
Poster #1127: Interim analysis of quality of life in patients with relapsing remitting multiple sclerosis treated with BG-12 (dimethyl fumarate) in the ENDORSE study
Poster #996: Safety profile of BG-12 (dimethyl fumarate) in relapsing remitting multiple sclerosis: long-term interim results from the ENDORSE extension study
Poster #990: Effect of BG-12 (dimethyl fumarate) in newly diagnosed relapsing remitting multiple sclerosis (RRMS) patients from the DEFINE and CONFIRM studies
Poster #1100: Dimethyl fumarate and monomethyl fumarate are distinguished by non-overlapping pharmacodynamic effects in vivo
FAMPYRA:
October 3
Poster #665: Long-term prolonged-release fampridine treatment and health-related quality of life outcomes: nine-month interim analysis of the ENABLE study
Poster #658: Health-related quality of life outcomes following long-term treatment with prolonged-release fampridine: impact on psychological outcomes in the ENABLE study
October 4
Poster #1128: Changes in physical functioning and activity following long-term treatment with prolonged-release fampridine in the ENABLE study
PLEGRIDY:
October 3
Poster #514: Peginterferon beta-1a provides improvements in clinical and radiological disease activity in relapsing-remitting multiple sclerosis: year 1 findings from the phase 3 ADVANCE study
October 4
Poster #989: Magnetic resonance imaging results from the first year of the ADVANCE study, a pivotal phase 3 trial of peginterferon beta-1a in patients with relapsing-remitting multiple sclerosis
Anti-LINGO-1:
October 3
Poster #545: The use of magnetic resonance imaging to monitor the safety of anti-LINGO-1: findings from phase I studies in healthy volunteers and subjects with multiple sclerosis
Poster #378: Blocking LINGO1 promotes axonal regeneration in the rat optic nerve crush model
DACLIZUMAB HYP:
October 4
Poster #977: Reduction in brain atrophy with extended daclizumab HYP treatment: results of SELECT and the SELECT extension study
Poster #864: Evaluation of immunogenicity in multiple sclerosis patients continuously treated with daclizumab-HYP during the SELECT and SELECTION clinical trials.
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