Tysabri was used by 8,000 patients in both Clinical Trials and after its marketing. Many patients had life changing results, here are a few testimonials of those wanting to share their experience.

2-27-06

Dear committee members, I would like this letter read at the public meeting March 7 & 8. My name is Janet Dressell and I am a victim of MS that has totally changed the life of not only me but that of my entire family. Before I proceed farther it is necessary to reveal that I am a stockholder in both Biogen and Elan. My husband and I invested only after the drug Tysabri was withdrawn from the market because, at least in part, we believe in the drug and did not want to see the companies fail.

I was diagnosed with MS on April 10, 1996 (our Anniversary). At that time I experienced numbness in both of my feet. After both an MRI and a spinal tap my neurologist was able to confirm my condition. This was not what we wanted to hear but I was prepared to fight with all that was within me. Since that time my condition has progressed. It has affected my vision, my mobility (I struggle to walk with a walker now), my thought process, my speech, I now am incontinent, and am very tired most of the time. My quality of life is not good. My numbness is to my knees in both legs and is affecting my hands. My struggle to walk and my frequent falling is affecting my back (I now have 3 bulging disks) causing me to be in constant pain. I also deal with muscle spasms in both legs daily which also causes me to fall frequently.

My neurologist has tried many treatments along the way which include Avonex, Rebif( which was a terrible experience), steroids, and many other drugs for specific symptoms. With all of this help my MS continues to progress with more and more relapses occurring much more frequently now. In Feb. ’05 I was given my first and only infusion of Tysabri. This was the most positive response I had ever had!! My fatigue was nearly eliminated (I did not have to lie down during the day for a month or more), my walking improved, my muscle spasms were gone, the vision problems were resolving, my thought processes greatly improved, my speech returned to normal (even my singing voice returned), the incontinence problem was much improved and there was once again hope for a quality of life. When it was withdrawn from the market it was as if someone had opened the door of life a crack so I could once again see what it was to have a quality of life and then slammed it in my face again. How cruel!! Since that time all of my symptoms have returned and my conditions have worsened greatly. As with any drug or any aspect of life (driving a car or crossing a busy street) there are risks and if you don’t have to take them you shouldn’t. I live in a state where my physician can prescribe a lethal dose of medications to end my life, it is legal for me to buy tobacco products and alcohol but I cannot have a CHOICE to take the only drug that can give me back a quality of life. Maybe someday there will be a better choice, but for now there is nothing to compare to Tysabri!! I am pleading with you now to please please please give me and anyone that demonstrate the guidelines necessary the CHOICE to have access to this miracle drug and have hope again for a quality of life. Thank you for your time and for reading my letter.

Janet L. Dressell

“My son’s graduation last May"

2-27-06

Hi,

My name is Steve xxxxx from Massachusetts. I was diagnosed with MS on August 12, 1999 at 2:30 PM. This is a date that is etched in my memory as it explained much and culminated a year where I watched my Dad waste away with cancer, my job go south through merger and the emotional effects of MS nearly cost me my family. The diagnosis put an end to my ability to referee Ice Hockey (hadn’t played since 1990 due to blurred and double vision), downhill ski and most other physical activity.

Despite the above, I have been able to get back on my feet, re-educate myself to be in a position to be productive, again. This process is based in part on “HOPE”. This hope is feeling that a treatment can be developed that will enable me to put this academic and life learning to use. This treatment is available, yet not on the market. “Tysabri” represents the best “HOPE” to date for a treatment that may allow many with MS to again be productive citizens. Please consider this and make the treatment available. At 54, I do expect to have a few productive years left. Yes, there is risk, but life is risk!

Steve xxxxx

2-27-06

My name is Barbara xxxxx. I was diagnosed with PPMS in Nov. 2001. Since then it has been nothing but downhill for me. I have lost my job, unable to work etc. I have very limited income but this is something that I am very interested in and so is my dr.

Barbara xxxxx

2-27-06

I am writing to request help paying the $20.00 to view the fda hearings on tysabri on march 7and 8, 2006. I am a 45 year old women living with m.s. I am active as a support group leader for people living with m.s. There are many people I know that were waiting for tysabri to be released and now have many questions and unfulfilled hopes unanswered. Thank you for your consideration.

Susan B xxxxxxx

2-27-06

On March 7th and 8th MS therapy Tysabri (aka;natalizumab) will be reviewed by the FDA Peripheral & Central Nervous Systems Drugs Advisory Committee. I being a Multiple Sclerosis patient for many years, as will many of my fellow sufferers find this a very useful tool in fighting our battle with MS. This drug was dangled before us only to be suspended in Feb.2005.

Of course I wish I would be able to view a live web cast or broadcast but a recorded VHS or DVD would be the next best thing. However, the cost for that is just too high for an average person trying to get along on disability. I think this would be a news worthy broadcast.

Sincerely,

Helen xxxxxxxxx
xx. xx. xxxxx Fla
xxxxxxxxx05@bellsouth.net

2-27-06

Hi I was given your website by a friend of mine who also has MS, and we are both trying to get more information on the medicine Tysabri and how it may help us. Any help is appreciated, if you can understand my typing.

Thanks you.

Justan xxxxxxxx

2-27-06

I am in a financial hardship right now but would love to watch the webcast of the event. I am an MS patient and am very interested in Tysabri for treatment. My fiance works but little hours right now. If u can help me with the fee to watch the webcast it would be greatly appreciated.

Thank You

Sarah xxxxxx

2-24-06

Great website! Thank you for providing this information and for attempting to make a stand. My name is Melissa. I am 40 years old, married for 21 years, and have two beautiful children. I was diagnosed in 1987. I have been on various treatment options over the years and am currently taking weekly injections. These are temporarily working, but I greatly anticipate the re-release of Tysabri. I was approved for Tysabri one week before it was removed from the market and I strongly agree that MS patients need to be allowed to make a choice. As a rule, MS patients are very educated concerning their disease. They deserve to make the choice of their treatment. I deserve the choice. I pray every day that this incredible drug will allow me to remain mobile and have a chance to see my children grow up while remaining active.

Thank you,

Melissa

2-22-06

To Whom It May Concern: I am not requesting a waiver of the $20 fee to view the Tysabri hearings. If I had a broadband connection, I would be requesting the waiver. As it is, however, I cannot afford a broadband connection, nor could I afford the $20 fee. I have had MS for 25 years and have been increasingly impoverished by the experience. I filed for bankruptcy a couple of years ago. I live in Section 8 housing for the very low income disabled/elderly. Isn't there a way for people like me to watch these important hearings?

Sincerely,

Joan x. xxxxxx

2-21-06

As a multiple Sclerosis Certified Nurse who also happens to have MS, I would encourage the filming for public viewing of the FDA hearings on the drug "Tysabri" which was fast tracked to the market and pulled three months later. As a patient Advocate, I am continually questioned on news of the potential re-release of this medication. This drug offers great hope to the MS community and thousands of persons with MS are eagerly awaiting news of the decisions that will be made about dosing, re-release and target population for the medication.

Sincerely,

Cherie x. xxxxx, RN, BS, MSCN
Clinical xxxxxxx xxxxxxxxxx

2-20-06

Letter sent to FDA

I respectfully request that the following be read at the meeting of the FDA Advisory Committee addressing the release of Tysabri.

I am writing to urge you to release Tysabri (natalizumab), sponsored by Biogen and Elan Corporation. I am a person with Multiple Sclerosis. I am a Licensed Clinical Social Worker. I was working in a program that helped keep seriously mentally ill adults in the community, in the least restrictive environment, and out of state psychiatric hospitals. I went from being a productive member of society to another burden. I am now on Social Security Disability because of the symptoms from the MS. If my husband looses his insurance, I will have to use my Medicare benefits when I become eligible.

I was in my neurologist’s office for an appointment late last winter and there were these people there, laughing, acting, and looking as if there wasn’t a care in the world. I thought it was a little odd. Why were they there? There didn’t look sick. During my appointment, my doctor told me that they were in the Tysabri study and had come in for their treatment. I had to stop the interferon because of liver complications. I had to stop the chemotherapy because of heart complications. I now have to take daily injections of Copaxone, since we were out of choices, and the MS is progressing, my doctor suggested Tysabri. It WAS my only choice. I was waiting for our insurance company’s approval the morning I heard it was being suspended. I was looking forward to a monthly treatment instead of daily injections that have unpleasant and painful side effects. I was looking forward to something that might offer more promise in managing this disease. I was looking forward to a treatment that offered hope that I might be able to return to some type of gainful employment. I went on Social Security Disability a few months later. I ended up with worsening symptoms on top of having to manage daily injection site reactions. The MS may have progressed any way, but who knows, it might not have. I sure would have liked a shot at it!

I now do volunteer work for the MS Society. I am a Peer Support Volunteer for others with MS who just want to talk with another person in similar circumstances. Based on the calls I get, there are many others that would gladly trade their injections for a monthly Tysabri treatment. Please, give us every opportunity to meet this disease head on, with a treatment that doesn’t make us sick or cause soft-ball sized welts. Let us have an opportunity to have a treatment that has the potential to give us back a piece of our dignity. I like being a volunteer, but I like a pay check more. Tysabri could do that. Help me get off disability. Release Tysabri.

Respectfully.

Mary xxxx xxxxxx, L.C.S.W.
State of Illinois #xxx-xxxxxx

2-20-06

Response to Sharyn

Sharyn,

I am 52years old, married woman with 2 teenage daughters. I was diagnosed 2 years ago but realize that I have had many symptoms for much longer. My MS is relapsing/remitting and I have had 3 relapses despite being on Avonex.

I was fortunate enough to have 2 infusions of Tysabri before it was taken from the market. There were no side effects with my infusions. I live in Norfolk Va. My name is Martha xxxxxx, my husband is named “xxxx” short for xxxxx. My daughters named are xxxxxxxxx and xxxxx. I like your picture, thanks for sharing. I hope that you get the drug you need and that you discover some relief from your MS.

Best wishes for your health and happiness!

Martha xxxxxx

2-18-06

I totally agree I feel we have the right to take our own chances. I may be old but I'm not finished with life...I want Tysbria to give it a try, a chance to be useful again.

Penny xxxx RN. BSN.

2-18-06

I want to commend you on setting up this site. I had great success with Tysabri and am urgently awaiting its return. I'm attaching a letter I sent to the FDA. It kind of gives you an idea of what the drug did for me.

Sincerely,

Roger xxxxxxxxx


Letter to FDA dated February 8, 2006

Dear Sohail Mosaddegh:

Subject: Tysabri Advisory Committee Meeting

I request that the following statement be read at the upcoming Tysabri Advisory Committee meeting on March, 7, 2006. I have no financial interest in the outcome of the FDA's decision nor am I affiliated with the pharmaceutical industry in any way.

I am a 28 year old MS patient who was diagnosed in March 2003. Since that time I have deteriorated rapidly and lost much of the function I took for granted my entire life. I have been on all the injectible medications, countless IV steroids, and a seven month stint with cytoxan chemotherapy. NONE of these treatments even remotely helped me. I was on tysabri for two months before the recall and felt the best I have felt since my diagnosis. There were marked improvements in all of the following areas: vision, spasticity, fatigue, bladder function, and motor function. I beg the FDA to rule quickly and reapprove tysabri for restricted use in ms patients. For me, the chance of improvement/stabilization far outweighs the small risk of PML. I should, at least, have the opportunity to make that decision. I am pretty sure I'm not alone in this assumption. Every week without this drug is time for me to worsen.

Please contact me if any other information is needed.

Sincerely,

Roger L. xxxxxxxxx MS patient

2-17-06

Letter sent to FDA

My name is Margaret XXXXX, and I have been diagnosed with Multiple Sclerosis. This disease has disrupted my life and my family's life since 1992. I am one of the more fortunate people with MS, however, as I am still employed full-time. I like to think that I am taking a proactive role in the treatment of my MS along with my neurologist.

Currently, FDA approved medications designed to slow the progression of the disease or to lessen the frequency of exacerbations have only given the MS community a 33% efficacy rate to date. Many people are unable to tolerate the many side effects of sub-cutaneous injections, suffer from debilitating depression, or tissue necrosis from the medications that are currently available. After years of giving myself intramuscular and sub-cutaneous injections of Avonex, Betaseron, and Copaxone, my disease was progressing to the point where I was no longer able to work as an Occupational Therapist. If it had not been for a very forward-thinking neurologist, I would have not been able to return to work. He had suggested that I undergo a course of Novantrone. This chemotherapy, approved by the FDA for people with secondary progressive MS or worsening relapsing-remitting MS, turned out to be a godsend for me. The mechanism of transmission of this medication, whereas it was different from the currently available injectible medications, attacked my MS from a different perspective. I am happy to report that I have not had a "true" exacerbation of debilitating MS symptoms since I reached the maximum life-time dosage of Novantrone four years ago.

Unfortunately, it is clearly documented that I progress quickly despite being on interferons, so the advent of Rebif entering the market was something that was not appropriate for me. When research started publishing reports of their initial findings in regards to Antegren (Tysabri), my neurologist had hoped that this was a medication that could finally help slow the progression of my disease. In anticipation of the medication being approved in Fall 2004, it was not as alarming not to be on any disease-modifying therapy, and the slow return of numbness, fatigue, weakness and spasticity was tolerated in hopes of the FDA approving Antegren. It was with great relief upon hearing the news that Antegren, then to be marketed under the name Tysabri, was approved by the FDA on November 23, 2004.

I immediately became proactive once again in the treatment of my Multiple Sclerosis. I contacted the director of our MS Center, who had been instrumental in conducting the clinical trials for Tysabri, and he was very encouraged by the results that his patients were showing in the clinical trials. He reported to me that none of his patients had adverse effects from the infusions. Steps were taken for me to have a baseline MRI, insurance approval, and an appointment set up for my first infusion of Tysabri. Medical supervision of the infusions, and follow-up testing were not unlike those that I had to undergo for Novantrone. I was scheduled to have my first infusion of Tysabri on March 2, 2005. My world crashed when I was informed not more than one hour after the announcement February 28, 2005 was made that Tysabri would be pulled from the market.

I have endured tissue necrosis, debilitating joint pain, bilateral lower extremity numbness, painful parasthesias, severe fatigue, weakness, and spasticity in the hopes that Tysabri would be approved, brought to the market, and made available to people like me who have been unsuccessful on currently approved medications. The only other medication that I have been successful on, I am no longer able to take due to having the lifetime dosage limit. I risked heart failure, lymphoma, leukemia, and osteoporosis to be on Novantrone, and I would do it again...I felt that the steps taken to monitor my condition were more than adequate to safeguard my health.

Learning of the news of three cases of PML and the two people that died is disturbing. It did not, however, sway my decision to go on the medication if it became available again. I will follow any black box warning, and undergo any diagnostic testing to be able to take this step in slowing the progression of my disease. There are many like me, I'm sure, that have exhausted all of the medication possibilities available to end the devastating effects of Multiple Sclerosis. I am encouraged by reports from my neurologist, who participated in the safety study after the medication was pulled, and his continued confidence in Tysabri. It is encouraging also to learn that there have been no new documented cases of PML. Reduction of active lesions, and the possible lessening of the severity of disability by more than 60% is better than any of the medications now approved for the treatment of Multiple Sclerosis.

As the months and years go on, there might be more medications on the horizon to treat this disease, but for now, my disease, my progression, and my disability are not waiting for scores of very knowledgeable physicians and scientists to decide if Tysabri is worth the risk and allow it back on the market. As a person with Multiple Sclerosis, I would take that risk, gladly, without remorse, and with eyes wide open. You see, I could be your daughter, your wife, or your mother...and this disease is not so slowly taking my life away. What do I tell my ten year old daughter? There once was a medication that helped some people like your mommy with MS, but they took it away. How do I answer her questions of why?

Thank you for taking the time to read this very long, personal reason why I believe that Tysabri should be approved by the FDA. It just happens to be my life we're talking about, and I'd like to be able to watch my daughter grow into adulthood without fear that she might someday, go through the hell I have gone through.

Respectfully,

Margaret E. XXXXX

2-15-06

Hi I'm a patient who is very interested in Tysabri's return to market. I've recently stopped treatment with Rebif.I'm interested in your group and would like to learn more about what I can do to assure we have this choice.

Anne xxxxx xxxxxxxx

2-15-06

Letter dated November 06, 2005

Dear Mr. xxxxxx, I am writing this letter to you for my mother. She is 51 years old and has had MS for 10 years now. In the last 2 years her quality of life has diminished dramatically. She has gone from walking with just a cane, to now having to use a walker for every move she makes. She has been on Avonex for many years and it is no longer working for her. She was able to get just one infusion of Tysabri in February of this year and her results were nothing short of a miracle. She was walking with her cane again (just for peace of mind), she was talking and thinking more clearly, she also got her singing voice back which has been gone for 3 years. We as her family were amazed and so thankful to have our mom back. Since Tysabri was pulled from the market she seems to be getting worse a lot faster. She is severely depressed and frustrated and as her daughter and her best friend it is killing me to have to watch her deteriorate like she is. My 2 young children want their Grammy to be able to play and not sleep as much as she does. We are running out of options and I am asking for your help.

I am completely aware as to the reasons why Tysabri was taken off the market. I have been in constant contact with many people wanting Tysabri back. For me at only 27 years old I am amazed at the compassion and help that I have received from people like xxxxx xxxxxx. Now I am asking for your help and compassion also. It is my understanding that the FDA has a compassionate use program that allows people to have drugs available to them that are not "approved". I have learned about this program from a contact I spoke with at the FDA when I found out that xxxx and xxxxxx were applying to re-market the drug. I am running out of options for my mom and I am hoping you might be able to help me. First, I would like to know if it might be possible to get my mom Tysabri under this program ASAP. I am desperate and I need my mom back. I see you as my last hope. I have written the FDA and been involved in multiple groups in trying to get Tysabri back. Right now I just need a little more hope than what I am getting from others and the FDA.

I thank you for your time in reading my email. I know that you are doing everything in your power to bring this drug back. It is the closest thing to a miracle that those with MS have ever seen and we thank you and your company for providing that to us. This is the beginning of a cure and I pray that a cure is closer than we can think.

Sincerely,

Christy xxxxxxx
xxxx xxx, OR
xxx.xxx.xxxx

2-15-06

In 1991 my primary care physician told me he was relatively sure I had MS. I was a recreational runner and had been falling on my daily runs. . My hands frequently were numb. He said since I'd had those symptoms for years , we might as well keep watching and see if anything changed. Nothing did; until 1999! My name is KP xxxxx and my whole world turned upside down in May of that year. I woke up one morning blind in one eye, unable to walk, and with difficulty breathing. I was hospitalized, given a battery of tests, and then my primary care physician came in with a Neurologist. They had determined with the results of these tests, that everything was the result OD NT MS. My difficulty breathing was even MS. A large lesion on the brain stem inhibiting even that most natural function.

This first MAJOR exacerbation, was a wake up call to all. I now speak out about early intervention. In the meantime, in 1999, I was put on steroids and my vision came back. Double. The breathing therapy continued. I was released from the hospital. I was in a wheelchair with a prescription for one of the interferon therapies. I started the interferon therapy and physical therapy to get back on my feet. And I did get back on my feet enough to walk with a walker. The double vision continued. I began to experience terrible dizziness.

I went on short term disability and tried to get control of my 'out of control' body. Several months later, with not a whole lot of improvement, my Neurologist decided I might be the perfect candidate for Novantrone. I began the Novantrone chemo therapy. The double vision and the dizziness continued, and brought back the falling. We decided it would be safer if I would move back to Ohio and live with my sister. I've done that and continue to pursue good health, as I knew it prior to this horrendous exacerbation !! And so I continue to wage my battle against this formidable disease. Now my MS has been categorized as relapsing progressive. My Neurologist says it's amazing how 'strong' I still am. He says this in spite of increased disability from exacerbations that seem to come closer and closer together. Because of my strength, he thinks I'm a good candidate for spinal cord surgery, (ITB therapy) to reduce the severe spasticity that so limits my mobility. He still struggles as he tries to control the severe pain I have from trigeminal neuralgia. My Neurologist says he hates me having spinal cord surgery, when we're still struggling to get severe pain under control. But for me, and so many other MS patients, there are NO CHOICES.

I was saddened and discouraged recently when during an emergency hospitalization, an MRI showed significant damage since my last MRI. And this, while totally compliant on therapy. With periodic steroid intervention.

There's something incredibly scary, knowing you have a disease that's destroying your central nervous system.

For those of us, Tysabri looks like an incredibly good choice. During 2005 the entire population was focused on the question of whether or not a person had the right to make the choice of how they would die. The Schiavo case gave us that focus. It made me think of the question as to whether or not a person should be able to determine how they LIVED their lives? I strongly believe they should be able to make that determination. Tysabri is key to providing so many that CHOICE!!

KP xxxx
xxxxxxxxxxx, Ohio

Trish Langsford
October 1971 - March 2002

2-13-2006

My daughter Trish passed away on 16 March 2002, at the young age of 30. She spent four and a half years in a nursing home, completely paralyzed, artificially fed, unable to communicate, yet understanding every word that was said.

Trish was unlucky to have a severe form of multiple sclerosis. In the short three years she was battling her MS prior to her admission to the nursing home, we tried everything and even paid for Beta-interferon before it was available on NHS. Trish and we her parents would undoubtedly have wanted to try Tysabri had it been available at that time.

Withdrawing a drug that gave so much hope to so many people is of great concern, given the potential outcome for patients like Trish. This devastating disease causes so much suffering and any treatment which offers hope should be made available to people with multiple sclerosis. We wish Trish had other medical choices at the time.

Carol Langsford
Australia

2-13-2006

My sentiments exactly! How long do MS patients have to wait for effective treatment? Apathy & too many lawyers. "Walk" a day in my shoes.

I am 55 & was diagnosed with MS just before my 40th birthday. Probably beginning as relapsing remitting in my mid twenties, now it is secondary progressive. After experiencing the flu-like side effects of Betaseron & Avonex, I opted for Copaxone so that I could both work & have quality time with husband & family on weekends. I don't know if Copaxone helps but it doesn't hurt either. It was my choice to do so.

I was approved for Tysabri the month it was removed. You know, the folks at NASA get billions of dollars in federal funding to send a space toy to Pluto (not sure if it's even a planet but will take 7 years & find out ); no wonder they cheer when a space probe launches successfully. And researchers & scientists don't cooperate to find the cure. Meanwhile, back on planet Earth, we lose our quality of life, plunge our families into emotional, physical & financial stress now & in the future. I move about on wheels now; Mom has MS & is in a nursing home so, without a breakthrough treatment, I know where the finish line is.

Distracted by discomfort & disability, I will nonetheless endure - as we all must. If again available, Tysabri would not only be my choice to halt the progression of the disease but my hope to reverse some of the symptoms.

Pam xxxxxxx
xxxxxxx, VA

2-9-06

My mother has MS and she is interested in getting involved with this group – assume you are volunteers. Can you provide information on we can become involved. Thank you.

Herm
610 xxx-xxxx

2-8-06

Listen to Lauren Roberts' Video Testimony

My name is Lauren. I turned 51 in November 2003 and I have had MS for 30 years. For 29 of those years, my MS was mild with only numb hands and a slight drop foot on the right side, but in 2004 my MS worsened. I had my first dose of Tysabri* (an IV infusion once every four weeks) in February 2005, and my symptoms started to improve drastically within two weeks. Since I am not able to tolerate the conventional MS therapies, and steroids no longer work for me, Tysabri is my only option at this point. Needless to say, I was extremely disappointed when Tysabri was voluntarily withdrawn from the market shortly after my first infusion, but what is worse than my disappointment is the rapid progression of my MS over the last few months without any MS therapy. I am now wheelchair bound and secondary progressive.

I believe with all my heart that patients should have a choice in their disease management, and without the option of having Tysabri to choose from (after carefully weighing the risk vs. benefit factors and being fully informed by our doctors, the company and the FDA), there is a large MS population with unmet medical needs.

Whether or not you would choose to have Tysabri as your MS therapy is not the issue here. The issue is having the option of the choice, which we currently do not have as long as Tysabri remains off the market. And we certainly do not have the choice of whether or not our MS will progress, because eventually it will, being that MS is a progressive autoimmune disease.

If you or someone you know is interested in Tysabri, I would urge you to follow the FDA Advisory Committee meeting scheduled for March 7, 2006, where the topic will be the risk vs. safety of Tysabri, etc., whether the drug should be returned to the market, and if so, with what labeling and monitoring. The hearing will be open to the public, and may even be broadcast on C-SPAN and webcast (check back on the MSPatientsForChoice website for details).

If our prayers are answered, we will get Tysabri back soon to ease the suffering and disabilities of tens of thousands of MS patients in the United States alone.

Be blessed,

Lauren

*Tyabri is a monoclonal antibody that blocks the harmful T-cells from crossing the blood brain barrier in the brain and entering the central nervous system, where inflammation occurs and the demylinating process begins. When demylination occurs, the brain sends signals to nerve endings that “mis-fire,” resulting in a variety of symptoms, which eventually lead to disability.

This is me before my MS started progressing rapidly. Tysabri was the only medication that was able to stop my attacks, and without it, I continue to decline. My prayer is that Tysabri become available soon again for me, and for everyone suffering with MS, that we start to regain what we've lost from MS (just as I did before with only one dose of Tysabri!) with drastic improvements in the quality of our lives, with the help of Tysabri.

For me, it is a VERY simple equation: With Tysabri=Improvements Without Tysabri=More Attacks & Further Decline

2-8-06

I just found your site and am very interested in your organization. I took tysabri and had very similiar experiences to those mentioned on the site. I want to tell others about it and help us get tysabri back. I would like to join your group as a member. Do you have chapters in cities around the country where we can talk to each other? Do you know when/if tysabri is coming back.

Thank You very much for what you’re doing.

Donna

2-8-06

Thank you!! I wish I found this website months ago! My husband has MS, after 6 months of unsuccessful chemotherapy he was offered Tysabri. The first dose his speech improved, his vision improved, his fatigue lifted he was like his old well self!! I can’t imagine what things would have been like if he had been on it continually WE WANT TYSABRI!

Good Luck and I only can only pray it will back on the market and those of us who are impatiently waiting for a cure will continue to be amazed by Tysabris benefit.

Thank You

Jackie

Audrey and Daughter

2-8-06

I was diagnosed with MS approximately 15 years ago. I was a practicing attorney, specializing in commercial real estate, until I was forced to retire five years ago due to the progression of my disability. I am confined to a wheelchair; I need 24 hr. care which I pay for privately.

I have always been proactive when it came to deciding on a course of treatment for my MS. In 1995, I participated in a Phase III, double-blind placebo clinical trial of Linomide, which was being conducted by The Cleveland Clinic. My parents live in Cleveland and at the time, my only real symptom was right-sided weakness. I traveled to Cleveland every 6 weeks for nearly a year to be examined by clinicians and to have MRI scans. The trial was halted after 5-6 patients died of heart attacks and when they "unblinded" the study, they discovered that each had been receiving the highest dose. I had been receiving the lowest dose, but they discontinued the study totally and I never heard about this drug again.

Since that time, I have been seen by specialists in New York, Boston and Israel. I have been through the allotted novantrone treatments, cytoxan, methotrexate (both oral and intrathecal), heavy duty steroid treatments (3, week-long hospital stays), IVIG infusions, the "abc" drugs and rebif. When I heard how promising Tysabri was, I couldn't wait to try it! Nothing ventured, nothing gained; I have no other options.

I am covered by Oxford Health insurance through my husband's employer. Since I collect Social Security disability, I am also covered by Medicare Part A (hospitalization), but I elected not to pay for Medicare Part B. In January, 2005, Oxford pre-approved payment for 12 treatments of Tysabri, but I was only able to complete one infusion in February, 2005, before the drug was pulled from the market. I had no adverse reactions or side effects to or from the drug. Obviously, one treatment did not give me the opportunity to realize any lasting benefits from the drug.

I feel very strongly that patients should be able to decide on their own course of treatment after being advised of the potential risks and benefits. Waivers of liability and informed consents are documents we should all be familiar with. Moreover, it is clear to me from everything I have read that the problem lies NOT with the Tysabri drug itself, but rather with the protocol (or lack thereof) of its administration. This is easily rectified by establishing guidelines and a list of drugs that should not be taken in conjunction with Tysabri.

My daughter is graduating from high school in June -- before I know it, she will be getting married. I would like the chance to halt the progression of my disease and, dare I dream (?), maybe walk down the aisle with her.

Audrey

“Attending my son’s graduation, with the benefit of Tysabri”

2-7-06

My name is Bartira Tiburtius. In March 2001 I was diagnosed with relapsing/remitting MS, and the following year I had two relapses. I had all the symptoms in the book -- numbness - fatigue – mobility problems - dizziness - coordination perception - trembling - loss of vision and, worst of all, I had cognition problems.

Following my second relapse, I was fortunate to join Tysabri's SENTINEL clinical trial, and I received 28 infusions of Tysabri, one infusion every four weeks. When I started in this double blind, placebo controlled study, even though I was not permitted to know whether I was getting the actual drug or not, I was certain that I was getting the real thing because of the way I felt. Little by little, I started to feel so much better, becoming healthier and healthier. Of course, when the study ended, it turned out that I was receiving the real thing.

Tysabri gave me the quality life I wanted, until it was suddenly withdrawn in February 2005. The company has now completed its safety review, and I understand the limited risk that may be presented if Tysabri is taken with other drugs, or even theoretically on its own. I want to have the option of choosing what is right for me, and right now, Tysabri is the best drug available to improve my life.

Bartira Tiburtius