Living With MS

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

Sunday, September 27, 2009

Hello everyone!

I had my 39th Tysabri infusion on Wednesday 9/30, but more important was the week before when I was invited by the Vice President - Corporate Relations of Élan Pharmaceuticals to speak at their Élan Employee Day on 9/25. My infusion went well with no problems, but let me get to my week prior to my infusion. The photos above are a few of my friends that got together for dinner up in San Francisco Thursday night-the night before I spoke at Élan : Ray, doodah, Me, Dexter, and Roy;
Me and my friend Roy; my friend doodah snatching a little smoocherooooni; the band that performed at Élan's Employees Day; Mr. Kelly Martin (the CEO Of Élan Pharmaceuticals) & me; Mary Stutts (she's the Vice President of Corporate Relations) & me; Dr. Ted Yednock (he's the brilliant scientist that discovered Tysabri & he is my hero!) & me; my friend Pam that I met up there in San Francisco who also has MS and just completed her 39th infusion, me, and an Élan employee that was all over the dance floor!

I had such an awesome time at dinner Thursday night with doodah, dexterstinks, Roymulus, and my caregiver Ray. I am not sure if the food or the company at our table was more sinfully wonderful!!! All three of my friends mentioned above were so generous, compassionate, and caring, it was all I could do to not burst out in tears (happy tears) at getting to see doodah again but especially to meet Roymulus for the first time (none of you could ever know how absolutely wonderful this man is), and to meet dexterstinks for the first time as well..., everyone was so funny & gracious, I'm surprised I didn't choke on my food laughing or have my mudslide fly out of my nostrils. I just hope they all had a good time and if they only had a minute decimal of the good time I had, I know they enjoyed themselves.

The trip up to San Francisco was rather tiring on me, but all of the arrangements made by Élan getting up there and the accommodations they provided me with were great. It's the trip back home Friday night that was a disaster (no shuttle was available to pick Ray and I up once we landed), even though I had the confirmation itinerary which was previously sent to me by Élan. After a two hour wait upon landing, Ray finally made arrangements with the shuttle, and we both made it home after a total five hour delay, through no fault of Élan or the airline, it was the shuttle service ( grrrrrr ). And to top it all off, the shuttle driver was waiting for a tip... I was so p.o.'d off at them, the only tip I gave them was not to swim in shark infested waters !

A brief synopsis of what transpired on Friday at Élan is below, and Friday, 9/25, was not only the Élan Employee Day, it was their 40th birthday celebration for the company, and it was a huge, and I mean HUGE production they put on for not only their employees, but their guests as well! A live band (which was phenomenal), professional dancers in the band (which were also phenomenal), a film of Élan's history which was shown on two large screens, and food-food-food-and more food!

Some of the speakers were Kelly Martin, Shane Cooke, Carlos Paya, Mary Stutts, one of the representatives from J&J, so many people, I can't remember them all. Above are photos of Kelly Martin and I, Mary Stutts and I, my HERO TED YEDNOCK and I (he came over to talk to me after my speech and spent at least 45 minutes talking to me-and me talking to him-both of us trying to speak over a live band that was playing) so he told me that we could speak later...(he could not believe that was my very first speech, we talked briefly about PML, how that all came about, the continued research of what happened with the patients that developed PML, the immune system, my personal experience with MS, etc. etc.) and oh so many top executives & researchers & employees that came out to meet me personally and thank me for being there...,

but it was me thanking them for inviting me, and everything that they are doing for patients. They are some of the most gracious, dignified but humble, caring individuals that I've ever met in my entire life..., they completely blew me away! I could not remember everybody that came up to me, because I was so exhausted by the end of the day and I'm sure some of them thought I didn't want to speak with them, but that wasn't the case at all..., I just ran out of steam. So I hope that they understand if they are reading this message.

Mary Stutts told me that she will be providing me with a copy of the video they were making of the entire event, including all patient stories. I'm not sure when their professional videographer will make this available to them, but she definitely and most graciously told me that they would be happy to provide me with a copy of same. She also mentioned to me that they might possibly use portions of my patient speech on their "Patient Voices" website..., woo hoo!

So here is the brief synopsis of my speech (I was allotted five minutes): I introduced myself, thanked several people including Mary Stutts for inviting me to speak there, her assistant Julie (who was utterly amazing- Mary, she is worth her weight in gold), Mary's other assistant Myesha, Mr. Kelly Martin, Ted Yednock, and everyone who works at Élan; I told them how old I am, how long I'vehad MS, that I was the first person in both 2005 & 2006 through Kaiser Permanente in Southern California to receive Tysabri, the kinds of improvements I made/had in 2005 just two weeks after my very first infusion:

(my limp was gone, my right drop foot was gone, my slurred speech was gone, my optic neuritis was gone, I put away my walker & was only using my cane for balance, and on the day my second infusion was to take place, Tysabri was removed from the market and how devastated I was. I then mentioned to them that it was in June 2005 that I got hit hard with a severe relapse which left me in a wheelchair and they could see how disabling a severe relapse can be. I then mentioned so many thanks go out to David Kaplan for actually bringing together so many Élan investors to help mobilize and assist many of us patients getting to the FDA Tysabri hearings in March 2006, MSpatientsforchoice, and how everyone just came together to bring about this endeavor, including the videographer that was arranged to videotape my testimony and then the delivery process to get it out to be viewed by the FDA AC committee.

I then mentioned that I basically am all over the Internet, specifically the MS boards, providing accurate Tysabri information, answering e-mails from scared MS patients about PML, advising them not to be scared, not to believe all the lies that are posted by idiots on the different MS boards, to speak to their doctors, I tell them about my experiences with Tysabri, and not to be afraid if their immune systems are okay.

I closed by telling them that Tysabri has given me hope once again and I am no longer afraid of waking up wondering what MS has taken away during the night (you never know when you might lose your eyesight, you might lose the use of your hands, legs, right side or your left side, maybe one of these symptoms, maybe all of these symptoms at once). With Tysabri, my MS is now stable, I have not had a relapse in over three years, and no new lesions showing on my recent MRIs. I may never be able to walk again, but that is never going to stop me from having hope for a better quality of life which Tysabri has already given me.

After my speech, Kelly Martin came up to me and just started talking to me, asking me if I've ever given a lot of patient speeches before, and I told him no, that was my first one and I was so nervous I almost threw up (seriously-LOL). He looked shocked and said that was your very first speech? And I said yes. I wanted to talk to him more, but they whisked me away to help cut their 40th birthday cake, and when I was finally done, I was told that Mr. Martin had to catch a plane. Darn it!

It does not matter to me whether or not you like him or don't like him, all I can tell you is that he is a truly gracious & caring individual when it comes to how he feels about patients, and how his and the company's focus is on the patients. I cannot you how many Élan employees came up to me after my speech to not only meet me but how much they thanked me for everything I'm doing..., but again, it was me thanking them for everything that they're doing! Some of us exchanged e-mail addresses, some of us patients also exchanged e-mail addresses, etc.

Okay, I'm exhausted now, so I'll have to call it a day.

Hugs to all, and thank you everyone for your warm wishes, your thoughts and prayers.

All my very best to each and everyone of you, Lauren

PS: Oops, I forgot to mention that BAP was also discussed in a favorable light, and many researchers at Élan came up and told me that they are very excited about this medication and the implications that it will have on the Alzheimer's patient population..., a couple of of them also told me that they were working on a Parkinson's medication. Just remember that I am unable to go into great detail about our conversations because the live band was playing at the same time we were trying to talk and listen to each other, and that was very frustrating for all of us, but especially me because I can no longer talk very loud. I really, really, really wanted to visit more with Mr. Yednock, but it was almost impossible for either of us to understand what each of us were saying to each other (Argh!)

Tuesday, September 15, 2009

My Tysabri Diary.....,

Good morning everyone, I wanted to post a very short survey that is being conducted by my friend Stuart, and you can also answer these 4 short questions on his blog and/or read other comments listed by other Tysabri users.

Have a great rest of this week: (here is the link for Stuart's Tysabri Survey)

1. What did you want Tysabri to do for you?
2. What changes have you noticed since beginning Tysabri?
3. How long did it take for these changes to be noticeable?
4. For How Long have you been using Tysabri?

Here was my reply to his survey:

Hi Stuart,

Thank you for your follow-up "Unofficial Survey for Tysabri Users"..., this should help others tremendously if they are undecided about Tysabri therapy and/or others currently on Tysabri therapy can compare their experiences as shared on your blog by others. I have posted your survey (Link) on my blog so that others may view your survey,and comment if they choose. In answer to your questions:

What did you want Tysabri to do for you?

I was hoping that Tysabri would stop my relapses (or at least slow them down) and slow my disease progression.

What changes have you noticed since beginning Tysabri?

I have noticed that I have hope once again in my life, and I no longer fear waking up each day with the thought of "what has MS taken from me today?". My quality of life has greatly improved and I have a renewed positive view when looking at my future.

How long did it take for these changes to be noticeable?

When I was first on Tysabri therapy (before it was removed from the market for 18 months), within two weeks of my first infusion back in 2/05, I noticed that my right drop but was gone, my limp was gone, my optic neuritis in my right eye had completely cleared up, my slurred speech was gone, and my balance issues were just starting to clear up. I put away my walker and just used my cane for better balance.

Unfortunately, I suffered a severe relapse during the time that Tysabri was not on the market. I am now confined to a wheelchair, but since restarting Tysabri in 10/06, I have not had one single relapse nor any new lesions showing on my recent MRIs. My MS is now stable, woo hoo!

For How Long have you been using Tysabri?

I have been on Tysabri therapy for almost 3 years.

I hope this information is of some help to others, take care now...,
Love, Lauren :)

Saturday, September 12, 2009

My Tysabri Diary...,

I had my 38th Tysabri infusion on Wednesday, 9/2. All went well as usual, no problems... yaaay!

I thought I would post a recent press release about Tysabri as follows:

Data Supporting Unique Efficacy of TYSABRI Presented at the 25th
Congress of the European Committee for Treatment and Research
in Multiple Sclerosis

Which states in part:

[Data] showing the potential of TYSABRI® (natalizumab) to redefine successful multiple sclerosis (MS) therapy. These data were from observational studies and retrospective analyses of the Phase III AFFIRM clinical trial, demonstrating that TYSABRI:
  • Significantly improves measures of physical and cognitive disability using the Multiple Sclerosis Functional Composite (MSFC) in patients from the AFFIRM trial with baseline impairment;
  • Promoted regeneration or stabilization of damage to the myelin sheath, which can cause some of the symptoms seen in MS patients, as measured by advanced MRI technology; and
  • Shows improvement in quality of life as reported by patients.
"MS patients should expect more from an MS therapy and studies such as these demonstrate the potential for TYSABRI to satisfy their expectations," said Michael Panzara, M.D., M.P.H., vice president and chief medical officer of neurology, Biogen Idec. “These data presented at ECTRIMS show that, for many MS patients, TYSABRI may lead to improvement in a broad range of physical and cognitive symptoms.”

“The strong efficacy profile demonstrated in clinical trials is enhanced further from these and other important TYSABRI data presented at ECTRIMS," said Carlos Paya, M.D., Ph.D., president, Elan Corporation. “TYSABRI is the first approved MS therapy with reported data suggesting some signs of the progression of MS can be stopped, whether measured by clinical, radiological or patient-reported measures.”

The data goes on to state the following, and details of the analyses is contained in their press release:

TYSABRI significantly improves physical and cognitive function

TYSABRI stabilizes and restores damage to the myelin sheath

TYSABRI patients report improvement in physical and psychological well-being

"TYSABRI is approved in more than 40 countries. In the U.S., it is approved for relapsing forms of MS and in the European Union for relapsing-remitting MS. According to data from the Phase III AFFIRM trial published in the New England Journal of Medicine, after two years, TYSABRI treatment led to a 68 percent relative reduction (p<0.001) in the annualized relapse rate, when compared with placebo, and reduced the relative risk of disability progression by 42-54 percent (p<0.001).

TYSABRI is redefining success in the treatment of MS. In post-hoc analyses of the Phase III AFFIRM trial and as published in The Lancet Neurology, 37 percent of TYSABRI-treated patients remained free of their MS activity, compared to seven percent of placebo-treated patients. In addition, data has been presented showing that treatment with TYSABRI significantly increased the probability of sustained improvement in disability in patients with a baseline expanded disability status scale (EDSS) score ≥ 2.0 by 69 percent relative to placebo."

Pretty impressive proven data, don't you think? (Smiling)

Oh I forgot to tell you all that Élan Pharmaceuticals invited me to come up to San Francisco and speak at their "Employee Day"..., pretty exciting for me! (They'll probably all be bored to death - heehee).

I'll report more when I get back home (I'll probably include this in my 39th Tysabri infusion report which will be on 9/30).

Enjoy your weekend everyone!


Love, Lauren :)