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!!

AMPYRA IMPROVES WALKING SPEED, WALKING ENDURANCE & COMMUNITY PARTICIPATION IN VETRANS WITH MULTIPLE SCLEROSIS (a longitudinal cohort study)


Mult Scler. 2013 Oct 7.

Overs S, Murchison C, Whitham R, Fitzpatrick M, Manning J.

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.

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.

VIDEO: Acorda Therapeutics (AMPYRA) CEO Ron Cohen on how the partial government shutdown affects the pharmaceutical industry

CLICK TO WATCH THIS 3 MINUTE VIDEO WITH THE CEO OF THE COMPANY THAT MAKES AMPYRA TALK ABOUT "NO NEW DRUGS"

STUDY: AMPYRA (Dalfampridine) improves walking speed, walking endurance, and community participation in veterans with multiple sclerosis: a longitudinal cohort study

Conclusions: AMPYRA (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 Ampyra in late MS. 
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

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.

A SERVICE DEVELOPMENT AUDIT OF FAMPRIDINE (AMPYRA) USE IN MS.
The 2MWT and accelerometry are good objective measures of walking disability in addition to the T25FW. Accelerometry provides additional real-life data regarding activity during the day, and offers information regarding the impact of fatigue on a patient. The MSWS-12 subjectively measures impact of walking disability and the ABC score predicts falls. The use of an assistive device identifies walking disability and predicts risk of falls. Given the uncertainty regarding falls risk in patients using fampridine, physicians should consider using these tools to monitor patients under consideration for the drug.

AMPYRA TIP #2

Ampyra is a drug made specifically for weak leg/ foot problem, or drop foot. It does not treat MS the way injectable meds do. You can ask to switch meds, and still use Ampyra. Its used WITH MS meds. Its not a MS med itself.

It was created for MS patients in mind but some people do have drop foot butn don't have MS. Talk with your neuro. There are pills, other injectable meds that only do it 4 times a week or 1 time a week. Definitely talk to your neuro. Many (((Hugz))) to ya

AMPYRA SUCCESS #1 I am so excited about what this medicine could do for me. The next day I noticed my walking improved

I started Amprya last Thursday night! 

I am so excited about what this medicine could do for me. The next day I noticed my walking improved just a little bit. I am not getting too excited just yet but am praying for change soon. 

I am so ready to get back on that dance floor and do the Cupid Shuffle, Doo Doo Brown and the Electric Slide!!