Promising new research conducted by some, well, rather renegade scientists at Johns Hopkins suggests that MS may be reversible!

A short-term, very-high dose regimen of the immune-suppressing drug cyclophosphamide seems to slow progression of multiple sclerosis (MS) in most of a small group of patients studied and may even restore neurological function lost to the disease, Johns Hopkins researchers report. The findings in nine people, most of whom had failed all other treatments, suggest new ways to treat a disease that tends to progress relentlessly.

“We didn’t expect such a dramatic return of function,” says Douglas Kerr, M.D., Ph.D, associate professor of neurology at the Johns Hopkins University School of Medicine. “Although we’re very early in the game, we think this approach could be the linchpin of a significant advance for MS treatment.”

Researchers have used the so called HiCy treatments with some success at Johns Hopkins for a variety of other immune system disorders, including aplastic anemia, lupus and myasthenia gravis.

Cyclophosphamide kills immune-system cells but spares the bone marrow stem cells that make them. The usual method of delivering it in pulsed, small doses, however, can cause the drug to build up to toxic concentrations in patients’ bodies, causing a variety of side effects, including a greatly increased risk of infection.

Seeking an alternative way to use the drug, Kerr and his colleagues reasoned that HiCy might clear out the majority of a patient’s immune system in one fell swoop, then allow it to ‘reboot,’ giving nerve cells a fresh start and an opportunity to repair themselves. In the current study, nine MS patients got a total single infusion of 200 milligrams per kilogram of cyclophosphamide intravenously over four days, a dose several times higher than that given in pulsed regimens but significantly lower than the total amount usually given patients over time.

Before treatment, Kerr says, the study participants were “the worst of the worst” among MS patients. Eight of the nine patients had failed conventional MS treatments, and several of them were wheelchair-bound.

It’s a situation many caregivers dread: a personal emergency knocks you for a loop and not only do you have to deal with the ramifications to your own personal life, what about the ramifications to the lives of those you care for? The Multiple Sclerosis Society is looking toward a method of bridging that gap with on-call, 24 hour ‘carer coverage’. Medical News Today reports:

The MS Society is to launch a new initiative that aims to reassure carers of people with multiple sclerosis (MS) that their duties will still be carried out in an emergency.

The free Carers Emergency Card gives 24-hour access to temporary cover for an unexpected situation and leaves the carers safe in the knowledge that their relative or friend will be looked after.

Whether it be the car breaking down while out shopping or maybe a medical or family emergency, many carers of people with MS worry that there may be a time when they will not be available to continue caring.

Jo Ridley, Carers Lead for the MS Society, said: “The MS Society Carers Emergency Card will now give carers the peace of mind that the person they care for will still be looked after if something untoward happens.

“This is a practical solution and will provide comfort to both the carer, and the person being cared for.”

The Carers Emergency Card is being launched to coincide with Carers Week (9 to 15 June). It is free to register for the card and during registration the carer will be asked for the details of three trusted contacts to be called upon in an emergency.

When the number on the card is called, leading telecare provider Welbeing will phone the named contacts and arrange cover.

Jo added: “A Carers Emergency Card system exists in some parts of the country but there are still many areas where carers are left to fend for themselves.

“Carers who already use an emergency card say that it gives them valued reassurance. By introducing this card, the MS Society hopes to plug those gaps where no service exists.”

For how to register contact Welbeing on Freephone 0800 085 8344.

It’s rather amazing that such a simple assistive technology device can make things a lot easier on people who need to use walkers to accomplish even simple tasks, such as taking food from the kitchen to the dining table. Student Jay Price, a mechanical engineering student at University of Colorado at Boulder, watched his father struggle with these issues for years as a patient with Multiple Sclerosis. When the opportunity arose for him to combine his profession with helping fellow sufferers, he jumped at it.

“I have seen firsthand the positive impact that a well-designed assistive device can have on the quality of life of a person who is disabled, and I have also seen how useless a poorly designed device can be,” said Price, who along with his fiancé, Katie Hauser, is co-leading team Blue Fish in the Boulder MS walk May 10. The annual event raises funds to aid research on multiple sclerosis, a degenerative disease that Hauser also is facing.

“This disease has already taken so much away from me. I try to do as much as I can to help put an end to its devastating effects,” Price said.

Italian researchers have successfully prevented relapses in 60 percent of Multiple Sclerosis (MS) sufferers in a new study researching the effectiveness of oral medication into the effects of this devastating condition. Currently most MS medications need to be injected, resulting in discomfort and lowered rates of adoption. Though research is both early and continuing, the promising results for an oral delivery route for effective medication could prove to enhance the quality of life for roughly 3 million patients worldwide.

TUESDAY, April 15 (HealthDay News) — The first pill designed to reduce the number of attacks in people with multiple sclerosis appears to be effective in early tests, Italian researchers report.

The pill was effective in preventing relapses in more than 60 percent of patients who took the pill for three years, according to research that was expected to be presented April 15 the American Academy of Neurology annual meeting, in Chicago.

“All of the current treatments for MS must be injected, so having a pill you can swallow with a glass of water would be a welcome improvement for many people,” lead researcher Dr. Giancarlo Comi, from Vita-Salute San Raffaele University in Milan, said in a prepared statement.

In the study, Comi’s team treated 281 people with relapsing MS with FTY720 (fingolimod) or a placebo. After six months, two-thirds of the patients who received FTY720 had more than 50 percent fewer relapses, compared with those receiving placebo.

During the three years of the trial, more than 67 percent of the 173 people receiving FTY720 were free of relapses. In addition, 89 percent of the patients were free of disease activity and 75 percent did not develop new lesions or see their lesions enlarge. This was confirmed by MRI scans, the researchers stated.

“The first-line treatments for MS, beta interferon and glatiramer acetate, reduce the relapse rate by only about 30 percent, so this is a significant development for people with MS,” Comi said in a statement.

The most commonly reported side effects of FTY720 were headache, flu and cold symptoms.

The drug works by binding to receptors on immune cells, isolating them in the lymph nodes, thereby reducing their ability to cause the damage associated with MS symptoms.

The study was paid for by Novartis Pharma AG, maker of FTY720.

One expert thinks this preliminary data is encouraging, but a lot more needs to be done to prove the drug’s effectiveness.

“This is a new drug that has a very strong scientific rationale why it could work,” said Dr. John Richert, executive vice president of the National Multiple Sclerosis Society. “Certainly, everything we’ve seen so far continues to keep us optimistic.”

Richert noted that over three years, 77 patients receiving the drug dropped out of the study. “You’re left wondering if a more severe adverse event led to the dropouts,” he said.

The six-month data where the drug was tested against placebo looks promising, Richert said. “If this turns out to be a safe oral drug that has substantial benefit, that will be very important for many people with MS,” he added.

WebMD has posted the results of two surveys indicating that almost 2/3rds of MS sufferers don’t take advantage of available mobility aid, or even discuss the issues with their physicians, resulting in significant emotional stress and lifestyle impairments.

Excerpt:

April 10, 2008 (New York) — The majority of people with multiple sclerosis (MS) say that trouble walking significantly affects their overall quality of life, yet many do not discuss their mobility issues with their doctors, according to two surveys.

The polls were conducted by Harris Interactive on behalf of Acorda Therapeutics Inc. and the National MS Society.

While 70% of people with MS who have difficulty walking say that it is the most challenging aspect of their disease, 39% of people with MS and almost 50% of their caregivers say that they rarely or never discuss this with their doctor.

Close to 70% of people with MS who have mobility problems say it affects their emotional health; about half say their mobility issues affect their ability to work and increase their daily expenditures.

In terms of mobility issues, “there are so many different areas to pursue,” he says. Several mobility aids — including canes, walkers, and electronic wheelchairs — are available to help people with MS, he says. According to the surveys, 32% of people with MS do use some type of mobility aid to get around. Of these, 37% said they are embarrassed by their use of such aids.

The first step is to evaluate the walking problem and identify the best strategies to improve it, he says. In addition to mobility aids, other tools are available depending on the problem. Exercise braces or electrical stimulation can help foot-drop (a compensatory technique that involves raising the heel on the stronger leg to make it easier to swing the weaker leg through); time and energy management can help curb MS-related fatigue, and there are drugs that can slow the disease course as well as treat spasticity and fatigue, he says.

WebMD has an informative Multiple Scelerosis newsletter, subscribe here!

Multiple Sclerosis (MS), a devastating and debilitating disease of the central nervous system, affects over 350,000 Americans and over 2.5 million people worldwide. Over a period of time, a perfectly healthy person descends in a seemingly unstoppable and progressive pattern of physical limitations. Until now. Wesleyan Research Institute (WRI) researchers report success in stopping early stage MS from progressing to the point where a normal lifestyle becomes impossible.

Medcompare reports:

A new research study being conducted at The Wesley Research Institute (WRI) aims to stop the progression of early active stage Multiple Sclerosis (MS) in its tracks.

They suffer from a range of debilitating symptoms including impaired gait and mobility, bladder and bowel dysfunction, cognitive and visual impairment, and profound muscle weakness.

“Current treatments for MS only reduce the progression rate of the disease. This new treatment, if successful, will actually halt the progression of MS.”

“Not only does it aim to stop MS in its tracks but it will also spare MS sufferers from weekly injections replacing them with infusions over three consecutive days every year.”

“The medication targets lymphocytes (a type of white blood cell) to decrease the inflammatory reaction responsible for the progression of MS.”

Preliminary studies have demonstrated that as a result of this medication sufferers have experienced fewer disease relapses, a decrease in the formation of central nervous system lesions and a reduction in cumulative disabilities.