Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Tuesday, May 22, 2007

My Tysabri Diary...

Today is truly one of the saddest days of my life. :'(

This morning, my kitty, Mina, who was 14 years old, broke her back and was paralyzed from her tummy down to her back paws, and was in sooo much pain (she also had been slowly losing her eyesight since Valentine's day this year). I had to put her to sleep this morning - oh God, my heart is breaking in a million pieces. My grief is so overwhelming, I can hardly breath and I just can't stop crying :'(

She was all I had left, she was my baby, and I just could not bear to watch her suffering one more minute.

This post is for her - Thank you my precious Mina - for all the joy and happiness you brought into my life. You helped me survive the death of you brother, the death of my 26 year marriage, and the loss of my legs to MS. We had been through a lot, and now your journey in this life is complete. I pray that you were happy and content living with me all those years.

Rest well my little angel...enjoy your life in Heaven and as you cross the Rainbow Bridge, your brother Milo will be there to meet you. I will see you again when my time and work in this physical life is complete. Until then, I will miss you with all my heart.

Goodbye my sweet babygirl - I will always love you.

Lauren :'(

Thursday, May 17, 2007

My Tysabri Diary...

I had my 8th Tysabri infusion Wednesday, and after a long rest when I returned home - I feel wonderful today, wooohooo!
When I asked my infusion nurse how many MS patients they are treating with Tysabri, she told me that they are currently infusing approximately 15 - 20 patients, and adding more weekly. She also said that some patients are afraid of this 'new' drug.

Rut roh...., I immediately gave her the FULL Lauren, as a friend of mine so entitled it - lol.
To make a long story short, when I said there were over 10,000 of us currently receiving Tysabri that weren't scared of Tysabri, I noticed there were approxmitely 6 other Certified Infusion nurses gathered around listening.

I asked them, where are the cases of PML in non-immune compromised MS patients receiving Tysabri as a monotherapy? Why are some of the MS patients that don't have permanent disability from this dreadful progressive disease noticing improvements in their symptoms from their Tysabri infusion? Why aren't others like me having increased disease progression and more relapses while on Tysabri? Why aren't ALL of us getting worse?

I gave
them the truth about Tysabri so that they could educate other patients and other professionals in the medical community.

My main point to them was that Tysabri's superior efficacy and three year safety
data has been basically surrounded in a cloud of doubt by false and misleading information purposely created by various media and it's competetors.

However, many patients are hearing the truth about Tysabri from other patients, and slowly given the option of switching to Tysabri by their neuros after fully discussing same with them.
MS patients and their treating physicans are listening.

Additionally, there are many others (some of you) that are challenging these 'falsehoods' and not just sitting by watching, they are doing something and becoming involved - with others becoming unknowing patient advocates for the uninformed by offering/talking about accurate Tysabri information to patients they meet, neighbors, family and friends.

My hope remains to improve with Tysabri because so far, I haven't become worse -


Love, Lauren
A very proud member of

Monday, May 14, 2007

My Tysabri Diary...

A very Happy Belated Mother's Day everyone! I meant to post this yesterday (my bad), but I was very busy on the different MS Boards helping other MSers...better late than never, eh? :) A friend of mine, Robin, sent this to me a while ago...I felt it was very appropriate for Mother's Day (and everyday for that matter), Enjoy!


After 21 years of marriage, my wife wanted me to take another woman out to dinner and a movie. She said, "I love you, but I know this other woman loves you and would love to spend some time with you."

The other woman that my wife wanted me to visit was my MOTHER, who has been a widow for 19 years, but the demands of my work and my three children had made it possible to visit her only occasionally.

That night I called to invite her to go out for dinner and a movie..."What's wrong,are you well," she asked?

My mother is the type of woman who suspects that a late night call or a surprise invitation is a sign of bad news.

"I thought that it would be pleasant to spend some time with you," I responded. "Just the two of us."

She thought about it for a moment, and then said, "I would like that very much."

That Friday after work, as I drove over to pick her up I was a bit nervous. When I arrived at her house, I noticed that she, too, seemed to be nervous about our date. She waited in the door with her coat on.

She had curled her hair and was wearing the dress that she had worn to celebrate her last wedding anniversary. She smiled from a face that was as radiant as an
angel's. "I told my friends that I was going to go out with my son,and they were impressed," she said, as she got into the car. "They can't wait to hear about our meeting."

We went to a restaurant that, although not elegant, was very nice and cozy. My mother took my arm as if she were the First Lady. After we sat down, I had to read the menu. Her eyes could only read large print.

Half way through the entries, I lifted my eyes and saw Mom sitting there staring at me. A nostalgic smile was on her lips.. "It was I who used to have to read the menu when you were small," she said.

"Then it's time that you relax and let me return the favor," I responded.

During the dinner, we had an agreeable conversation - nothing extraordinary but catching up on recent events of each other's life. We talked so much that we missed the movie.

As we arrived at her house later, she said, "I'll go out with you again, but only if you let me invite you." I agreed.

"How was your dinner date?" asked my wife when I got home. "Very nice. Much more so than I could have imagined," I answered.

A few days later, my mother died of a massive heart attack. It happened so suddenly that I didn't have a chance to do anything for her.

Some time later, I received an envelope with a copy of a restaurant receipt from the same place mother and I had dined. An attached note said: "I paid this bill in advance. I wasn't sure that I could be there; but nevertheless, I paid for two plates - one for you and the other for your wife. You will never know what that night meant for me. I love you, son."

At that moment, I understood the importance of saying in time: "I LOVE YOU" and to give our loved ones the time that they deserve. Nothing in life is more important than your family.. Give them the time they deserve, because these things cannot be put off till "some other time."

Somebody said it takes about six weeks to get back to normal after you've had a baby.... somebody doesn't know that once you're a mother, "normal" is history.

Somebody said you learn how to be a mother by instinct .... somebody never took a three-year-old shopping.

Somebody said being a mother is boring .....somebody never rode in a car driven by a teenager with a driver's permit.

Somebody said if you're a "good" mother, your child will "turn out good"....somebody thinks a child comes with directions and a guarantee.

Somebody said "good" mothers never raise their voices .... somebody never came out the back door just in time to see her child hit a golf ball through the neighbor's kitchen window.

Somebody said you don't need an education to be a mother.... somebody never helped a fourth grader with his math.

Somebody said you can't love the second child as much as you love the first .... somebody doesn't have two children.

Somebody said a mother can find all the answers to her child-rearing questions in the books....somebody never had a child stuff beans up his nose or in his ears.

Somebody said the hardest part of being a mother is labor and delivery....somebody never watched her "baby" get on the bus for the first day of kindergarten .... or on a plane headed for military "boot camp".

Somebody said a mother can do her job with her eyes closed and one hand tied behind her back...somebody never organized seven giggling Brownies to sell cookies.

Somebody said a mother can stop worrying after her child gets married....somebody doesn't know that marriage adds a new son or daughter-in-law to a mother's heartstrings.

Somebody said a mother's job is done when her last child leaves home....somebody never had grandchildren.

Somebody said your mother knows you love her, so you don't need to tell her.... somebody isn't a mother.

To all the "mothers" in each of our lives and to everyone who ever had a mother...this isn't just about being a mother; it's about appreciating the people in your life while you still can.

My mom died 3 years ago, and I always made sure she knew how much I loved her each day that she was still on this earth. She was one very special lady to I will always aspire to be like. The last time I saw her, she was happy... we had a wonderful visit and as we waived goodbye, both of us were wearing smiles of love
for each other...I will always cherish that memory.

I have no regrets...Happy Mother's Day :)


Love, Lauren
A very proud member of

Sunday, May 06, 2007

My Tysabri Diary...

I find it almost laughable that even in spite of the recent glowing reports of Tysabri's Efficacy beyond 3 years, and Continuing Safety Data, the media just can't get their facts right when reporting on Tysabri.

For example, here is a letter I sent to the WSJ reporter Ms. Jennifer Corbett-Dooren and all their editors today correcting her (even though her article was pretty good and her address reads - the full article is at the end of my post here). Feel free to submit your comments to them too!

Subject: Your Article of 5/3/07 re: Tysabri - Priority: High
Date: Sat, 5 May 2007 12:21 PM

Ms. Corbett-Dooren:

Thank you for your excellent Article: "Biogen, Elan Get No New Reports Of Brain Infection From Tysabri". However, I would like to point out one very important inaccuracy in your article. You wrote: "The FDA recommends the drug be used only after other treatments fail for the relapsing-remitting form of MS." and this is completely incorrect.

Tysabri is a first line and/or second line defense against MS...Tysabri is for patients with relapsing forms of MS that generally have not responded to, or cannot tolerate, other MS treatments.

What this means is that Tysabri is a first line (like the ABCRs) and/or a second line defense/treatment for MS. The phrase "cannot tolerate" can be interpreted by the treating physican to include their "needle-phobic" patients...or patients with "aggressive forms of relapsing MS"... , therefore, the patient does not necessarily have to fail one med first in order to have Tysabri.

Pursuant to Dr. Katz and Dr. Temple of the FDA, they explained to the public in a Conference Call shortly after their Advisory Committee hearings in March 2006 that the FDA's decision/language above was purposely left open and left up to the treating physican.

See the FDA statement: "The Food and Drug Administration (FDA) today approved an application for resumed marketing of Tysabri (natalizumab).. Tysabri is indicated for use as monotherapy, because we don't know enough about how its use with other immune modifying drugs could impact risk. It is also meant for patients who have not responded adequately to, or cannot tolerate, other treatments for MS." .

Tysabri's FDA approved Label states: "TYSABRI® is indicated as monotherapy for the treatment of patients with relapsing forms of multiple sclerosis to delay the accumulation of physical disability and reduce the frequency of clinical exacerbations." (which is almost identical to the ABCRs).

I happen to know a few Tysabri users that are using Tysabri as a first line therapy for their MS. It was their treating neuro's decision to rx it as first line for them and they were all too happy to start Tysabri.

Furthermore, "relapsing" forms of MS include Relapsing/Remitting (RRMS), Secondary Progressive with Relapses (SPMS)*, and Progressive Relapsing (PRMS). These are all forms of MS which are in the inflammatory stage.

Patients with Primary Progressive (PPMS) and Secondary Progressive without Relapses (SPMS)* are in the demyelinating stage of their MS and are ineligible for Tysabri at this time.

*SPMS has two categories: Initially, MS patients with RRMS progress to SPMS With relapses (still eligible for Tysabri), and then they progress to SPMS Without relapses (ineligble for Tysabri). Approximately 50% of MS patients are now SPMS with relapses.

This distinction is important as Tysabri has been proven to stop/slow the disease process down, and prevent further relapses with their accumulating disabilities.

I am a 52 yr. old MS patient, diagnosed with MS for 31+years, and I testified via videotape at the FDA AC hearings in March 2006. I am also classified as SPMS With Relapses, and have had 7 Tysabri infusions since 10/06. I was having relapses approx. once a month prior to my Tysabri therapy, and subsequently, I have not had one relapse nor any disease progression since 10/06 and my MS is now stable.

Ms. Dooren, please consider issuing a correction to your article as indicated above, so that the MS community will be better informed, especially the currently eligible Tysabri MS patients that are suffering disease progression and further debilitating relapses (some of which will be left with permanent damage) from erroneously believing they are required to try and fail the older generation DMDs first, before allowed Tysabri (which might be too late for the many that will become ineligible for Tysabri at that time as their disease will have progressed to a non-relapsing form of MS).

Give them their hope back with the truth about Tysabri - you'd be surprised how many MS patients and Neurologists your "financial" article has reached. In spite of the fact that many of us are physically disabled now, our minds are still sharp and we enjoy reading well written articles from the world renowned WSJ.

Thank you for your time, attention, and consideration regarding this matter.

Respectfully submitted,

Lauren Roberts (MS patient & Tysabri user)


Full Article:
Biogen, Elan Get No New Reports Of Brain Infection From Tysabri
By JENNIFER CORBETT DOOREN May 3, 2007 8:20 a.m.

WASHINGTON -- There have been no additional reports of a serious brain infection known as progressive multifocal leukoencephalopathy, or PML, among patients taking the multiple-sclerosis drug Tysabri, the drug's makers said Thursday.

Biogen Idec Inc. and Elan Corp., also said there were no reports of other "serious opportunistic infections," as of April 23. The companies released the first safety update involving Tysabri since the drug was allowed back in the U.S. market last June. The data was released at the American Academy of Neurology's annual meeting on Boston.

The drug was pulled off the U.S. market in February 2005 after two patients developed PML and one died. A third patient was later discovered to have PML and also died.

Tysabri is currently under a restricted distribution system and a program that allows the companies to track potential safety problems with the drug.

The companies said about 12,500 patients world-wide have been prescribed Tysabri, including about 6,600 patients in the U.S. currently who are on therapy.

The companies said about 10,000 U.S. patients and 1,500 physicians have enrolled in the restricted distribution program known as Touch. Tysabri is administered as an infusion in a clinic. The FDA recommends the drug be used only after other treatments fail for the relapsing-remitting form of MS. MS is a progressive disease that involves damage to nerves controlling muscles and vision, and affects about 400,000 Americans.

Before Tysabri can be started, patients must undergo a magnetic resonance imaging or MRI scan to differentiate potential future multiple sclerosis symptoms from PML. Patients would then be evaluated at three months, six months and then every six months after that. The status of those evaluations must be reported by doctors to Biogen Idec.

Biogen and Elan also issued an update on an extension study of an original two-year study that involved 942 patients. That study, known as Affirm, showed Tysabri cut the annual risk of relapse by 67% compared with patients on placebo, or a fake drug. The extension study includes 531 patients, 250 who have received almost three years of therapy.

The companies said, the annualized relapse rate for patients treated with Tysabri over the three-year period was 0.23, which translates into an average relapse rate of one relapse every 4.3 years. Over the three-year treatment period, the relapse rate averaged 0.27 during the first year; 0.20 during the second year; and 0.15 during the third year.

Write to Jennifer Corbett Dooren at

That's all for now everyone. Have a terrific upcoming week. :)

Love, Lauren
A very proud member of

Thursday, May 03, 2007

My Tysabri Diary...Can I Get A WoooHooo? Good News!

Hi all, new data from the TOUCH Prescribing Program™ and TYGRIS (TYsabri Global ObseRvation Program In Safety) safety study confirms the safety profile from previous clinical studies of TYSABRI® (natalizumab), and according to data available to the companies as of April 23, 2007, there have been no new reports of confirmed cases of progressive multifocal leukoencephalopathy (PML) or other serious opportunistic infections (OIs). The data confirm the safety profile from previous clinical studies of TYSABRI and will continue to expand the knowledge of the long-term safety and tolerability of TYSABRI.

Also presented at the 59th annual meeting of the American Academy of Neurology in Boston, MA were extension study data that showed that TYSABRI has a sustained treatment effect on clinical relapses and the risk of disability progression in multiple sclerosis (MS) patients treated for up to three years. The companies recently reported that as of mid-April 2007 approximately 12,500 patients have been prescribed TYSABRI worldwide. The companies estimate that in both commercial use and clinical trials, there are currently over 10,000 patients on TYSABRI therapy worldwide.

Here is a link for the full data released: Data Presented at the American Academy of Neurology's Annual Meeting Provide Update on Utilization and Safety of TYSABRI® in Patients with Multiple Sclerosis.....Additional Data From Extension Study Presented Show TYSABRI Benefit is Sustained Over Three Years

I can't stay, but wanted to post the above fantastic news as it sure beats crying my eyes out (today's date 5/3, would have been my 27th Wedding Anniversary) ... good triumphs over bad again - wooohoooooo!

(((((((hugs everyone)))))))) :D

Love, Lauren
A very proud member of