PeopleWithMS.com Newsletter

May 21, 2004


PeopleWithMS Welcomes . . . . . 

Anyone ! 

No membership required.  No dues or fees.  No opinion unacceptable.  No unstated rules about what sites are approved, or those unacceptable to visit.  Come as you are, go where you please.  We've got no hidden agendas, no subsidies from drug companies or MS organizations.  And no crappy pop-up miracle-cure ads.  

We're just PeopleWithMS.  

The only requirement is a desire to live better with MS.  


Chats are active most every night starting around 7PM EST, and during the days around lunchtime EST.  However, feel free to drop by anytime, leave your window open for a bit, and somebody is sure to drop by.

Daytime chat includes . . . 


GMATractor aka Deanna gives it her all.  This week, she prepped and painted her house.  Herself !  Or, as she says;  "JACK HATES TO PAINT . . . I WILL DO THE PAINTING IF HE SETS THE LADDERS." And;  "IT ONLY TAKES A FEW DAYS SO I AM SURE IT WONT DO MUCH FOR ME AS FAR AS EXERCISE GOESYou can't keep a determined MSer down !  We hope to have the before pictures up before GMATractor gets back.  To be followed with "After" pictures.

 "THE SWEETIE GIRLS," Susan and GMATractor are headed for Niagra Falls for the Jooly's Joint Transcontinental Get-together.

Share relayed her excitement that her parents had sold their house.  Now Share is shopping on-line for a house close to her.  

DANA aka UNCHEC briefly joined Lesley Anne's Wednesday Chat.  He's on Copaxone, and from New Hampshire.  

Delbert is in South Dakota this week.  Followed, of course, by North Dakota.  Can't have one without the other.  Remember, WheelsofHope needs your support ! Track his progress across the 48 continental United States; http://www.wheelsofhope.net/  

PeopleWithMS.com needs chat hosts ! ! ! Donate a couple hours during the day or evening to host, on a regular basis, and we'll make you famous !  Lunchtime chat slots are open on Tuesdays and Fridays.  Or any other time you'd like !   If your focus is a particular topic or aspect of MS, just let us know and we'll post that in the Newsletter, too.  

Muff continues as our stalwart host for many hours during the day.  Just waiting for your visit.  Whenever you see her in chat, with an afk next to her name, she's probably off making herself some tea.  Just say hi, and she'll pop back.


PeopleWithMS.com Hot News Contest

This Month's Contest Prize

A Hand-Painted Cane from our sponsor, StumblinStyle

Something special for yourself, or someone you know who needs something to brighten every footstep in their day.  We'll be offering the winner their choice of a tasteful selection of men's or women's canes in derby or crookneck handle styles and various weights.

( Absolutely no cost to the winner - we even pay shipping ! )

The first sharp-eyed news maven to report the best new news or research of the month to PeopleWithMS wins a prize ! ! !  (click here for details . . .)

Next Month's Contest . . .

Stay tuned to this spot.  We'll be coming up with something completely different.


New Stories and Pictures

ThisCouldBeYou

?

Your name, story, and photo in the spotlight, right here in our weekly newsletter.  Just send it along to: PWMS@PeopleWithMS.com

New Link Sightings

Every week we add new link sightings which may be of interest, as reported by our visitors.  This will highlight new links you may want to investigate, before they disappear into the obscurity of some huge link listing.  If you come across any site which you think may be of interest, please e-mail us PWMS@PeopleWithMS.com with the site address and a brief description of what you found interesting on the site.  We'll include it in the next Newsletter.

MSFoundation Booklets and Brochures MSFoundation MrRED 5/20/04

The MSFoundation has recently released some new books, brochures, and publications you might want to check.  A hot number with some might be;  Complementary and Alternative Medicine for People with Multiple Sclerosis  As they state;  " Professionally reviewed by Dr. Allen C. Bowling, Medical Director at the Rocky Mountain MS Center, this booklet offers unbiased information on alternative therapies such as acupuncture, reflexology, biofeedback, meditation, and much more." 

Making sense of basic research studies in MS: Part II of II (How Immune Cells Work) Veritas Medicine MrRED 5/14/04
" This will provide a simple picture of how immune cells figure in MS, appreciating that not all immune responses are necessarily ‘bad’, and that some may actually be ‘good’. With this model, we will then be able to identify how the approved immune modulators in MS (Avonex®, Betaseron®, Copaxone® and Rebif®) are thought to work."

This is a very readable explanation of what is going on with your immune system, and how the approved medications appear to work.  If you missed it when we mentioned it in one of last month's Newsletters, read the companion;  Making sense of basic research studies in MS: Part I of II

MultipleSclerosis.com MultipleSclerosis.com Judy 5/17/04
Judy submitted this site as possible news.  Well, the site redesign is news.  As a new link, though, it's very nice.  Worth your time to poke around !

Check out their upcoming Multiple Sclerosis Webcast on May 25, 2004, at 8:30 PM EST;  Understanding the Complexities of Multiple Sclerosis The Myth of Mild MS


News Sightings

We've let loose the news floodgates.  Contest be damned, the public has a right to know.  Full news ahead !  

But there's still one more week to scoop that earthshattering research breakthrough.  Be the first with your entry. 

Low Dose Naltrexone Update US National Multiple Sclerosis Society MrRED 5/20/04 
"Naltrexone is an opioid antagonist that has been approved by the U.S. Food and Drug Administration (FDA) since the early 1990s for the treatment of addictions to opioids and alcohol. At significantly lower doses, it has been marketed on the Internet as a treatment for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson's disease, Alzheimer's disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as MS and other autoimmune diseases. There are, however, no published reports of placebo-controlled clinical trials demonstrating the safety and efficacy of naltrexone in any of these diseases. The marketing efforts rely entirely on anecdotal reports.

"Naltrexone is said to work in MS and other diseases by adjusting the level of endorphins in the body to enhance immune function. Enhancement of the immune system, however, is not recommended for anyone with MS. Because MS is thought to be an autoimmune disease, in which the immune system mistakenly attacks the myelin in the central nervous system, the goal of currently approved treatments is to inhibit the overactive immune response rather than boost it."

"People with MS are advised to avoid any medication, dietary supplement, or other treatment that is touted as strengthening the immune response. "

Clinical Programs Department
in collaboration with 
Allen Bowling, MD, PhD
Rocky Mountain MS Center
"

The National Multiple Sclerosis Society's opinion of LDN, quoted in entirety. 

Based on a statement from the Rocky Mountain Complementary and Alternative Medicine MS Center.  

When a fairly credible pair of organizations from the opposite poles of mainstream and alternative medicine issue a joint recommendation, it would be unwise to  dismiss it lightly.


Squiggy is in the house: 'Laverne and Shirley' star now Seattle Mariner's scout Seattle Times MrRED 5/18/04 
David Lander hits the Big League, as scout for the Seattle Mariners.   Who says MS has to get you down ?

RESEARCH ADVANCES IN MS REPORTED AT AMERICAN ACADEMY OF NEUROLOGY MEETING
Laquinimod AAN / NMSS MrRED 4/30/04 
"The placebo-controlled, early phase trial of two doses of the agent was conducted in 209 persons with relapsing forms of MS. The drug was well tolerated, and those on the higher dose had significantly fewer new active MS brain lesions during the 24 weeks of testing."

Promising in that it is a different drug, and an oral one !

Zenapax AAN / NMSS MrRED 4/30/04 
"So far their results in 16 individuals suggest that the drug may stabilize or even improve the clinical status of individuals with relapsing-remitting and secondary-progressive MS who had not benefited from other therapies. . . . The authors note that the potential of this drug is being explored, alone and in combination with other immune-modulating drugs, in a Phase 2 clinical trial."

Although this is a very tiny trial, it is significant as another "combination" therapy similar to Antegren.  

Stem Cell Transplantation AAN / NMSS MrRED 4/30/04 
"The Canadian MS/Bone Marrow Transplant Study Group presented findings from their ongoing efforts involving persons with early, aggressive forms of MS. This group used chemotherapy to kill immune cells before transplant. Preliminary results reported previously suggested that most who underwent the procedure stabilized and had no new brain lesions seen on MRI."

This is the detailed report to the AAN of prior news we'd reported of a radical solution to aggressive cases of MS.  Essentially, the immune system is totally wiped out using chemotherapy, then rebuilt with stem cells.  Not for the squeamish.  But serious cases may warrant taking greater risks.

Primary-Progressive MS AAN / NMSS MrRED 4/30/04 
"Dr. Mariko Kita of Virginia Mason MS Center in Seattle, and colleagues across the country, conducted a Phase 2 clinical trial of Novantrone® (mitoxantrone) to treat primary-progressive MS . . . Dr. Kita presented the disappointing results, which showed that there was no apparent clinical benefit in any of the clinical outcomes studied."

"A large-scale clinical trial of Copaxone® (glatiramer acetate) for treating primary-progressive MS (the “PROMiSe” Trial) was stopped prematurely in 2002 because an interim analysis of the data indicated that the trial could not show a benefit of Copaxone over placebo."  "Further analysis suggested that males on Copaxone showed a statistically significant reduction in progression"

Not much "promise" to either of these trials.  Important in that they show paths without much potential.  Maybe Copaxone would work for males, but whether it will be cost effective for Teva-Marion to continue research is another big question.

Aricept and Memory in MS AAN / NMSS MrRED 4/30/04 
"Further analyses from a clinical trial support the potential of the oral medication Aricept® (donepezil hydrochloride, Pfizer, Inc.) to modestly improve performance on memory tests in individuals with multiple sclerosis."

Cognitive problems are common in MS.  Further trials are planned, so this bears watching.

Long-Term Extensions of Clinical Trials AAN / NMSS MrRED 4/30/04 
" Investigators from the U.S. and Canada presented results of the “CHAMPIONS” study, an open-label extension study that followed original participants of the two-year “CHAMPS” study. The CHAMPS study had successfully shown that Avonex® (interferon beta-1a), given to individuals who had experienced their first clinical demyelinating event (a single attack of a neurological symptom), could slow the development of definite MS compared to placebo. As a follow-up, the CHAMPS participants were offered a chance to switch from placebo to treatment, or continue on treatment, until five years had elapsed since the start of the original study. . . . 

The CHAMPIONS study compared outcomes in those who had gotten drug from the start of the CHAMPS study (“immediate treatment” or IT group) versus those who had switched from placebo after about 30 months (“delayed treatment” or DT group). Dr. R. Philip Kinkel (Harvard’s Beth Israel Deaconess Medical Center) presented the findings, showing that the IT group (100 individuals) had significantly fewer relapses and fewer MRI brain lesions than the DT group (103 individuals), and that significantly fewer of its members converted to definite MS. The investigator noted that these findings offer further support for the idea that initiating disease-modifying therapy early in those at high risk for developing MS may have a long-term benefit. The investigators plan to continue following participants in the future. "


Dr. Kenneth P. Johnson (University of Maryland, Baltimore) and colleagues across the country have been following the long-term outcomes of individuals who participated in the original, multicenter, placebo-controlled clinical trial of Copaxone® (glatiramer acetate) which led to its approval for relapsing-remitting MS. After the original trial, an “open label” study began in which participants were given the choice to continue taking the drug (or switch from placebo to active treatment). . . .

The team compared the progression of disability after 10 years between 108 participants who had been on treatment continuously since the start of the original trial and 47 who withdrew from the open label study after several years but who were followed even if not using the agent. The investigators reported that those who had been on continuous treatment showed significantly less progression of disability than those who had withdrawn, and suggested that Copaxone is effective over many years.


The relevant quote (applicable to both these studies) is: "these findings offer further support for the idea that initiating disease-modifying therapy early in those at high risk for developing MS may have a long-term benefit."  

High Dose, High Frequency Rebif (Interferon beta-1a) May Result in Sustained Reduction in Accumulation of Brain Lesions in Multiple Sclerosis 

(PRISMS Study Long Term Follow Up)

AAN / NMSS MrRED 4/30/04 
"New long-term data supports the importance of early treatment with high dose, high frequency Rebif® (interferon beta-1a) 44 mcg in reducing the long-term accumulation of brain lesion volume in patients with relapsing remitting multiple sclerosis (MS)."

"This is good news for people with relapsing remitting multiple sclerosis as it shows that earlier initiation of high dose, high frequency interferon beta-1a therapy with Rebif, compared to a two-year delay, is associated with a greater likelihood of reduction in total lesion accumulation over time," said Dr. David Li of the University of British Columbia in Vancouver, British Columbia, Canada.

And doesn't finding this sound similar to the long term findings for Avonex and Copaxone?

Optic Neuritis AAN / NMSS MrRED 4/30/04 
"For as long as 31 years, Swedish investigators have been following a group of individuals who had had a single episode of optic neuritis and were at risk for developing definite MS. . . . Overall, after 15 years, there was only a 40% chance of developing definite MS, most of which occurred within 3 years of the first optic neuritis episode."

A pretty significant finding.  ON as an initial, presenting symptom might mean MS.  Most likely additional presenting symptoms confirming clinically definite MS will occur within a short time period thereafter.

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News Letter Archive

Missed something from an old Newsletter?  Find it here !

5-21-04 5-15-04 5-7-04
5-1-04 4-23-04 4-16-04 4-10-04
4-2-04 3-27-04 3-20-04 3-13-04
3-6-04 2-28-04 2-21-04 2-14-04
2-07-04 1-31-04 1-24-04 1-17-04

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