PWMS chat ! - Update
We have had a few new chatters this week. Vanessa, one of our newer chatters, has battled with different MS meds for many years. She has not found any that had any positive effects without leaving her with some very bad reactions. LDN has helped a lot with her symptoms. Vanessa is in chat mostly every night with us. I am sure she would share with anyone who has any interest in LDN.
PWMS Welcomes . . .
Welcome, Eve, and also Jill, 2 new chatters this week.
Any chatters touched by M.S. What this means is anyone with M.S., a family member of anyone with M.S., or simply a friend who wants to understand M.S.
PWMS & MS Bunch working together :)
MS Bunch has a great new message board! We would like to join together with them and use their message board. They are sending their members over to our chat. Let's team up and make use of both web sites. Some of us work, some of us just don't have enough energy to keep up with it all alone. We have noticed that when MSERs team up and work together on web sites, a message board, and chat that updated information flows more freely.
A drug that was approved for multiple sclerosis patients two years ago but removed from the market because of the risk of brain infections is now back on the market under strict usage guidelines.
Dr. Daniel Johnson, of Neurology Consultants PC in Davenport, is certified to prescribe the drug, called Tysabri.
Tysabri is injected intravenously once a month.
Lindsey Wolf, 49, of Sherrard, took the drug for several months two years ago and began taking it again a month ago.
"Back then I found it was really helping me from getting worse," Mr. Wolf said. "I haven't really noticed anything yet (this time) because I only tried it once. I'm going to wait and see this next time to see how I do next month. I think it will be a pretty good drug."
Tysabri is an antibody that inhibits white blood cells from getting into the brain and attacking nerves. By keeping those cells from attacking nerves, Tysabri slows the worsening of disability that is common in patients with MS.
"It's a very powerful drug," Dr. Johnson said.
At the same time, the drug increases patients' chances of getting progressive multifocal leukoencephalopathy (PML), a rare brain infection that causes death or severe disability.
When the drug was on the market for a few months in 2004, three people got the virus and two died from it, Dr. Johnson said.
That's why when Tysabri came back on the market this year, it was made available only through a restricted distribution program called the TOUCH Prescribing Program. It only can be administered by approved doctors, infusion sites and pharmacies. To be approved, doctors, pharmacists and infusion centers must receive special training.
Genesis is the only hospital in the region and one of only four in Iowa that has been approved to deliver Tysabri. The Genesis pharmacy and infusion center at Genesis Medical Center, West Campus, are approved to offer Tysabri to patients.
Dr. Johnson said he does not know of other drugs that are as strictly controlled, although some chemotherapy drugs require special certification to administer.
Drugs previously approved to treat MS reduce flare-ups by about a third. Tysabri is twice as effective, reducing flare-ups by 67 percent and brain lesions by 80 percent.
In MS patients, flare-ups and lesions start to accumulate into permanent disability, Dr. Johnson said.
"We're really saving this for people who have more significant disease and have failed other therapies," he said.
Mr. Wolf said he doesn't believe drugs he's used previously have helped him. He is hopeful Tysabri will keep the disease from progressing and help him regain strength.
"I think this new drug will really be good," he said.
Multiple sclerosis at a glance:
-- More than 350 people in the Quad-Cities have MS.
-- Most people with MS are diagnosed between the ages of 20 and 50.
-- Women are twice to three times as likely to be diagnosed with MS.
-- Studies indicate that genetic factors make certain people more susceptible than others, but there is no evidence that MS is directly inherited.
-- MS is more common among people with northern European ancestry, but those of African, Asian, and Hispanic backgrounds are not immune.
Early Treatment of Multiple Sclerosis Yields Long-Term Benefits
By Will Boggs, MD
NEW YORK (Reuters Health) Oct 04 - Early and ongoing treatment with interferon beta-1a can provide lasting benefits to patients with relapsing- remitting multiple sclerosis (MS), according to a report in the second September issue of Neurology.
"Long-term treatment with this agent is feasible and tolerated by most patients with some evidence of sustained benefit regarding clinical disease progression and MRI related outcomes," Dr. Ludwig Kappos from University Hospital Basel, Switzerland told Reuters Health.
Dr. Kappos and colleagues report follow-up data for up to 8 years after entry of patients into the Prevention of Relapses and Disability by Interferon beta-1a Subcutaneously in Multiple Sclerosis (PRISMS) study.
The annualized relapse rate was significantly lower among patients in both originally treated groups (44 mcg and 22 mcg interferon beta-1a, three times weekly) than among patients treated later, the researchers note, and patients were more likely to remain in remission if they were originally randomized to the high-dose treatment group.
Patients randomized originally to 44 mcg interferon (but not to 22 mcg interferon) had a lower median percentage increase in MRI-measured burden of disease during long-term follow-up, the report indicates.
Treatment with interferon was generally well tolerated, the investigators say, with no new safety concerns.
"This trial represents another enormous expenditure of effort to determine whether we are helping our relapsing-remitting MS patients with existing therapies," writes Dr. John H. Noseworthy from the Mayo Clinic College of Medicine, Rochester, Minnesota in a related editorial.
"I respect this effort," Dr. Noseworthy concludes, "but am cautious about the authors' conclusions that 'patients with relapsing-remitting MS can experience sustained benefit over many years from early interferon beta-1a subcutaneously three times weekly therapy.' Perhaps this is true (I hope it is), but the evidence is not yet fully convincing to me."
Dr. Kappos responded: "Dr. Noseworthy is correct in that this study did only provide indicative evidence for efficacy as it did not have an untreated control group from year 3 onwards and because at the end of the day we do not know what the impact of those patients who did not complete the follow-up would have been."
Nonetheless, he concluded, "Justification of early treatment with IFN-beta or glatiramer is not only based on this observation but also on data from early treatment studies and from new insights in the neuropathology of early and late phases of MS."
Our objective is to provide an informal, supportive site for people seeking on-line information about Multiple Sclerosis. We aren't doctors, we aren't experts. We just live it everyday. We formed this site to share what we have learned, provide a focal point for exchange of information, and give back to the community.
Support is a very big word when it comes to MS. Doctors can only tell you so much during an office visit. Leaving unanswered questions, concerns and issues. People with any disease can often learn best from each other. To this end we provide a chat forum to share information and suggestions, posting of the latest news, and links to authoritative sources of information.
There are many informative sites out there. Visit them all! You can never have enough information. We do not intend to compete with any other sites. Like coffee shops, each has it's own unique atmosphere and clientele. There can never be enough of them.
Our chat is open for anything that has to do with MS. Some topics are not pleasant. But need to be talked about. If you have a problem, no matter what it is, chances are there is someone in chat that can help you. The one thing that PWMS will not accept is being laughed at for any MS problem. We expect all chatters to be considerate of others.
We have appointed Jeff, Rod and JackIL has room administrators. They have been using the chat. They walked through the set up with us. They can help you if you need help.
Please help us remember to ask all chatters to sign the guest book. It's our only way of sending them our news letter.
Chat Hosting Schedule
We have no hosting schedule right now. Chat is always open and Guests are always welcome. Someone is in chat from 8 EST on. Feel free to drop in and join us. If you have any ideas please share them.
If you come in and one of chatters is there, say Hi ! Please wait, they could be away for many reasons. Like getting coffee. Please be patient, they do return.
If you have any interest in hosting please contact us at PWMS@PeopleWithMS.com
Montel Williams is promoting the new prescription program " Partnership for Prescription Assistance " : https://www.pparx.org/
call 1-888-477-2669 / 1-888-4PPA-NOW
There are over 150 different programs that can help you get your meds for free, or at a low cost. Check it out ! ! !
We also have some links up on our web site that may help. Check it outPatient Assistance Programs
New Stories and Pictures
Your name, story, and photo in the spotlight, right here in our newsletter. Just send it along to: PWMS@PeopleWithMS.com
We need pictures and stories of our new chatters. It helps new MSer's to see that they can do it also. It helps to know your not alone. So please help others - we need your pictures and stories. They can be emailed to PWMS@peoplewithms.com . Or, anyone who wants to add Pictures or update their story, please do so.
Check out all of the recipes on our web site. that chatters have shared with us
Please Email us with any recipes you would like to share with us PWMS@peoplewithms.com
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