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Winnie
    01/18/08 at 09:32 AM
Reply with quote#16

Hi Sheryl,

Good to hear from you.  OK, blame it on me......I'm used to it.  Sounds like you are doing just fine.  Glad to know NORD is helping.  I might give them a try again maybe they will help me with my cost for Beta.  Who knows.

Hope everyone has a good weekend.

Talk Soon
Diana
Roy
    01/18/08 at 04:55 PM
Reply with quote#17

Diana about Tysabri causing brain tumors. It did on 2 or 3 people I think it was when it first came out. But they were taking Avonex with along with the Tysabri. Since it has come back on the market I think that I read some place that around 400,000 people are taking Tysabri in the US and not a single case of brain tumors has been detected.

 

Roy 

Lin
    01/22/08 at 09:09 PM
Reply with quote#18

Hi Roy, Di, Sheryl and all.
 
Thanks Roy and Sheryl for your updates on how you are doing with Tysabri.
 
Reading your info is much more informative than reading the manufacturers info.
 
The hard thing about so many meds (not just for MS) is that you just don't know if it's helping or not.... should you take one or the other or not any...
 
Anyway, I am glad there are things out there
 
Lin
 
 
 
 
Pincher
    01/23/08 at 11:11 AM
Reply with quote#19

Hi Lin,

Welcome back.......you are so right about the meds, you just don't know if it's helping or not.  With Beta, I know the doc says you need to take them "Do you want to end up in a wheelchair?" but it's hard to understand when it doesn't do anything for me now.  I don't feel any better and I'm not improving.  For all that I've had to do to get help to pay for Beta and still have to pay $150 I want improvement NOW.  I know it could be worse but I just don't understand.  They are supposed to have a cure.  With all the money spent and all the research that has been or is being done why can't they find a cure?  I'm just really sick of it!  Does anybody else feel like it's just not fare?  Sorry to wine but it gets old.

Talk Soon
Diana
Roy
    01/23/08 at 04:02 PM
Reply with quote#20

That the way I feel about a cure too. They are making some improvement.     I do think that the Tysabri is help me.
But then I look around and I see some else that is worst off than I am.
 
The way that I figure it is You better do what ever that you can do to stop or slow the MS down.
I been read that stem cell is our best hope.
 
Roy
Roy
    01/24/08 at 08:19 AM
Reply with quote#21

 

It funny that we was talking about a cure for MS yesterday and this pop up in my E-Mail this morning. I don't remember how I did it but I sign up for Google alert, Any time some thing about MS come up it will sent me an E-Mail tell me about what it said.
 
Drug gives MS patient more independence 
 
ALBANY - A new treatment for multiple sclerosis is showing great promise.
 
A Capital Region woman who is proof positive of it's potential.
 
It's been 28 years since Chris Nigro was diagnosed with MS. Of the four types of MS, he has secondary progressive -- meaning the condition generally keeps getting worse. She was told there was no treatment, but she never gave up hope of walking.
 
Then Nigro began treatment at the Multiple Sclerosis Center of Northeastern New York and her condition not only stabilized, but she began to grow stronger thanks to new medications.
 
Nigro's improvements made her a prime candidate to take part in a study for a drug called Fampridine.
 
"For years I had been trying to take one step when I pulled myself on a bar and I always felt if I could take one step, then I can try for two steps and then you can try for three and then you're off," she said.
 
Now she's able to walk about 50 feet with a rolling walker.
 
"Just to put one foot in front of the other and put my weight on my legs just feels wonderful to me," she said.
 
For the first time in 14 years her sister Nora Reid sees her upright.
 
"It's just so amazing and wonderful to see her on her feet. And she's taller than I am and I haven't seen that in along time," Reid said.
 
Fampridine is an old drug with a new life.
 
"It doesn't alter the disease, but it helps people function better," explained Dr. Keith Edwards, a neurologist at the MS Center.
 
Nigro is among 500 people nationwide who took part in the most recent clinical trial. While she didn't know what she was getting, it was clear she was getting better.
 
"It's symptomatic treatment to allow the messages to get through the spinal cord better," Edwards said.
 
The study recently wrapped up. Because Nigro is still being followed she's able to get the drug free of charge.
 
"I don't know that she's going to run the 100 yards in under 10 seconds but her independence is going to continue to improve," Edwards said.
 
Famipridime, which is taken in pill form, remains under study and the results are still being compiled. So it's not clear it will work for every MS patient like Nigro.
 
Also, because it's still under review, Edwards can only say it appears the drug worked for her. He also points out MS treatment is not one size fits all.
 
 
 
Squeeky
    01/24/08 at 09:17 AM
Reply with quote#22

Roy,

Thanks for the update.  I will ask my doc about Fampridine and Tysabri and see what he says.  It's always nice to hear good info. but like we always say "what is good for one is not for the other".  Since you are so knowledgeable about MS, could you explain the 4 types.   Not sure what stage I'm at.  I just know it's frustrating.

Have a great day!
Talk Soon
Di  
Roy
    01/24/08 at 11:04 AM
Reply with quote#23

 

I look back in my files and this is what I found. Hope that it help you.
I have the primary-progressive kind.
 
Roy
 
People with MS Can Expect One of Four Courses of Disease
MS tends to take one of four clinical courses, each of which might be mild, moderate, or severe:
  • A relapsing-remitting course (RRMS), characterized by partial or total recovery after attacks (also called exacerbations, relapses, or flares). This is the most common form of MS. Approximately 85% of people with MS initially begin with a relapsing-remitting course.

  • A relapsing-remitting course that later becomes steadily progressive is called secondary-progressive MS (SPMS). Attacks and partial recoveries may continue to occur. According to some natural history studies, of the 85% who start with relapsing-remitting disease, more than 50% will develop SPMS within 10 years; 90% within 25 years. More recent natural history studies (perhaps because of the use of MRI to assist in the diagnosis) suggest a more benign outlook that these numbers suggest. Nevertheless, many patients with RRMS do develop SPMS ultimately.

  • A progressive course from onset without any attacks is called primary-progressive MS (PPMS). The symptoms that occur along the way generally do not remit. Ten percent of people with MS are diagnosed with PPMS, although the diagnosis usually needs to be made after the fact-when the person has been living for a period of time with progressive disability but no acute attacks.

  • A progressive course from the outset, with obvious, acute attacks along the way, is called progressive-relapsing MS (PRMS). This course is quite rare, occurring in only 5% of people with MS.
DiDi
    01/24/08 at 01:28 PM
Reply with quote#24

Roy,

I don't know which one I fall into.  When first diagnosed '93 was the worst of my difficulties getting around when doc had me do the home steriod infusions.  I didn't feel they helped much then doc started me on Avonex (this drug killed me) with terrible side effects.  Now on Beta, no side effects.  Although I'm still walking, it's not easy for me, bad gate, left leg limps and constant body pain.  I can only go so far and I have to sit down.  Some days I feel like I'm getting worse and others I'm OK.  So what category would I fall in?  I'm thinking RRMS?

Thanks
Diana
Me Again
    01/24/08 at 01:39 PM
Reply with quote#25

I called my doctor's office and actually talked to his nurse and not voicemail.  She said I'm at the relapsing-remitting stage.  That answers my question.

Bye Bye
Di
Roy
    01/24/08 at 03:14 PM
Reply with quote#26

I got this off the Nationmssociet.org site
I thought that it was worth passing on.
I know that you want to learn all that you can about Tysabri.
 
Roy
 
 
 
Tysabri Improved Quality of Life among Participants in Pivotal Clinical Trials in MS
 

December 21, 2007
 
Data from the two large-scale clinical trials of Tysabri® (natalizumab, Biogen Idec and Elan Pharmaceuticals) that led to its approval show that, in addition to reducing MS relapses and slowing the rate of disability accumulation, the drug significantly improved health-related quality of life in people with relapsing-remitting MS who were on active therapy. Quality of life measures include a person’s general well-being and physical, social and psychological functioning, and they are not often part of outcomes measured in clinical trials involving people with MS. Richard A. Rudick, MD (Cleveland Clinic Foundation) and colleagues report these findings in the Annals of Neurology (2007;62:335-346).
 
Tysabri was approved by the FDA for relapsing MS based on its ability to reduce the risk of disability progression and reduce relapses in two pivotal clinical trials, called AFFIRM (which compared Tysabri alone to inactive placebo in 942 people with relapsing-remitting MS) and SENTINEL (which tested Tysabri plus interferon beta-1a or Tysabri plus placebo in 1171 people with relapsing-remitting MS). In relapsing-remitting MS, a person experiences clearly defined flare-ups of neurological symptoms followed by partial or complete recovery periods.
 
In the current study, Dr. Rudick and other AFFIRM and SENTINEL investigators report on health-related quality of life data that were collected at weeks 24, 52 and 104 of these trials. The data reported were mainly collected using the “SF-36,” a questionnaire that asks patients to report on a broad range of quality-of-life issues, including physical and social functioning, role limitations due to physical or emotional problems, bodily pain, general health perceptions, vitality and mental health.
 
In the AFFIRM study of Tysabri alone, there was significant improvement over 2 years in six of the eight individual scales of the SF-36. Physical function scores improved by 24 weeks and were sustained at week 52 and 104. In the SENTINEL combination therapy study, scores improved significantly on five SF-36 scales. In both studies, SF-36 scores correlated with those measuring disease activity, relapse number and the volume of brain tissue damage as seen on MRI, with quality of life measures worsening with increasing severity of disease activity.
 
E. Ray Dorsey, MD, MBA, and Robert G. Holloway, MD, MPH (University of Rochester Medical Center) comment in an accompanying editorial that health-related quality-of life scales may have limitations, such as their subjectivity. However, “Demonstrating the beneficial effects of interventions on patient-reported outcomes is critical because many clinical trial endpoints do not reflect outcomes that are important to patients.”
 
-- Research and Clinical Programs Department
 

 

http://www.nationalmssociety.org/site/PageServer?pagename=HOM_RES_research_2007dec21<br/>

 

You Know Who?
    01/24/08 at 03:28 PM
Reply with quote#27

WOW that's great!   Thanks you are Mr. Information and my #1 Fan.

HaHa
Gotta Go
Diana
Shelly
    05/29/08 at 09:52 AM
Reply with quote#28

Is anyone still out there? I am an MS'r, diagnosed just last August. I will have my 3rd Tysabri on Monday. Just trying to figure out this disease. I'm 39, kindergarten teacher, and just want a cure! Help.

Shelly

Diana
    05/29/08 at 01:39 PM
Reply with quote#29

Hi Shelly

Thanks for joining us.  I'm sure someone here can answer any questions you might have.  How do you feel when taking the Tysabri?  Do you feel like it's helping you? 

I know what you mean when you say you just want a cure.  This monster is so frustrating and unpredictable.  I know I'll never figure it out.  I just wish it would go away!

I know at the end of my day I am tired and supposed to be happy about having to fix something for dinner.  I bet you are exhausted.

Hope you have a great day.

Talk Soon
Diana   
Lin
    05/30/08 at 10:18 PM
Reply with quote#30

Hi Shelly and welcome to this board.
 
I really don't think anyone can understand or figure out this MS, right now, but maybe down the road?
 
We're all in the same frustrating situation.
 
There is always hope and hope is the most important thing in the world (a sense of humor is very useful, too).
 
Hang in there.
 
Take care and stay out of the heat.
 
Lin
 
ps: I am on R and have not had T.
 
 
 
 
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