Living With MS

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

Friday, June 12, 2009



My Tysabri Diary...,

Hi everyone, I had my 35th Tysabri infusion on Wednesday and my infusion nurse got a line in on the first stick, damn she's good (oops)

We were discussing how the different MS patients were doing on Tysabri ( at their infusion clinic). She did tell me that most of us are now stable (the majority of us are SPMS, and the permanent damage from prior relapses has already been done because we were without Tysabri-for various reasons of course).

However
, she did mention to me that their newest Tysabri patient is showing great improvements after just one Tysabri infusion such as she is now able to sleep through the entire night, has less aches and pains and less muscle spasticity, including improved eyesight. The patient has had MS for 10 years now, and her neurologist was not willing to watch her slide downhill, so he immediately switched her to Tysabri ( my infusion nurse could not remember which prior MS medication she was on, but my guess is probably one of the ABCRs). This newest Tysabri patient told my infusion nurse that she is really looking forward to her next infusion! God bless her neurologist for immediately switching her to Tysabri.

Within my post is a link for various UTube Tysabri videos, which I think are terrific & promote Tysabri from a MS patient's point of view. And below the link is an e-mail exchange that I had with a Tysabri patient which left a comment on my blog (she was so unbelievably sweet)..., I'm still a little tired from my infusion Wednesday, so I'll make this short -

Enjoy your upcoming weekend everyone ..., Lauren


Here is the link for the UTube Tysabri videos:



Here is my e-mail exchange as noted above, I'll start with the comment left on my blog which I answered via e-mail:

Subj: Tysabri
Date: 6/10/2009 3:53:35 PM Pacific Daylight Time
From: LGLBGL2003
To:
Right-click picture(s) to display picture options


Hi XXX, please call me Lauren..., it is so nice to meet you!

You said: "Is there anyone out there over 60 that's on Tysabri? After my 33rd infusion, my doc wants me to go off of Tysabri. I'm on it too long and my age factor is an issue. I'm Secondary Progressive. And I keep hearing that Tysabri is not for SP ms."

I will be 55 this year, and I just had my 35th Tysabri infusion today..., since when is your age factor an issue? Where does it state on the Tysabri label that you are not allowed to have Tysabri at your age?? I'm Secondary Progressive as well, with relapses. I have friends that are over 60 in the Tysabri trials, where exactly is your neurologist getting this misinformation from???

Tysabri is for "relapsing forms" of MS, and this includes Relapsing- Remitting, SPMS with Relapses, and Progressive Relapsing MS..., all of these forms of MS are in the inflammatory stages, whereas SPMS withoutRelapses and Primary Progressive are in the demyelinating stages of MS and Tysabri will probably not help in the demyelinating stages of MS.

If you go off Tysabri, you run the heightened risk of having increased Relapses, will it be worth it to you? Does your doctor understand that he is putting you at this risk??? Please discuss these questions with your neurologist.

You are more than welcome to e-mail me at any time, just please list Tysabri in the "subject line" of your e-mail so that it does not go into my spam folder and become deleted inadvertently.

Take care dearheart...,

Lauren


Subj: Re: Tysabri
Date: 6/11/2009 10:03:53 AM Pacific Daylight Time
From:
To: LGLBGL2003@aol.com
Sent from the Internet (Details)


Hi Lauren, Are you the same Lauren with the that has a blog?
Thanks for the encouragement on my dilemma. I'm scheduled for my next infusion on the 18th. My doc told his physician's assistant to call me on the 16th to let him know of my decision. As of this moment I do plan to go ahead with the infusion. I am now contemplating finding another doctor for a second opinion.
I live in XXX. I go to an MS clinic at Lehigh Valley hospital in Allentown. My former doctor at Lehigh left to move to Ohio. He's the one that put me on tysabri. The clinic is good. I hate to start all over with another doctor. Good doctors are hard to find.

Thanks for your response. Please keep in touch. My name is XXX.


Subj: Re: Tysabri
Date: 6/11/2009 3:06:58 PM Pacific Daylight Time
From: LGLBGL2003
To:
Right-click picture(s) to display picture options


In a message dated 6/11/2009 10:03:53 AM Pacific Daylight Time, XXX writes:

Hi again XXX, you ask:

Are you the same Lauren with the that has a blog?


Yep, that be me! I reviewed your questions on my blog under the comments that you and others left.

Good for you in going forward with your next infusion. If your doctor refuses to let you continue with your Tysabri uninterrupted, it does appear that you're going to have to find a different neurologist. I do know that changing doctors can become a real hassle, but you have one major plus on your side...,You are already on Tysabri therapy! As far as finding a new doctor, just call your Tysabri Case Manager at MSActiveSource ( 1-800-456-2255 ), and tell them you need three names and phone numbers of Tysabri "Certified" neurologists near you - all you have to do is provide them with your ZIP code. More than likely, the three names & phone numbers of the doctors they will provide you are MS specialists, and that's a good thing. Oh gosh, I'm starting to sound like Martha Stewart again! Heehee

Please keep in touch with me and let me know if you were able to find a new doctor, or e-mail me if you have any other Tysabri questions, okey-dokey artichokey?

All my very best to you, always -

Lauren

2 Comments:

  • At 3:56 AM, Blogger Herrad said…

    Hi,

    Please come by my blog and pick up your award.

    Have a good day.

    Love,

    Herrad

     
  • At 10:00 PM, Blogger Blinders Off said…

    Lauren,

    You are the face of Tysabri :)

    I have been keeping up with your progress using Tysabri. I met a young man at the MS Walk on Tysabri. He was very positive about his Tysabri use of 12 months.

    As you know my husband is fearful of me taking Tysabri, I personally am no longer afraid of Tysabri.

    If the day come for me to change my DMD, I will use Tysabri. Fortunately, my MRI a few weeks ago showed that I have not had a new lesion while on Copaxone. Therefore I am going to continue it unless I have another frightful IPIR.

    Enjoy your weekend...

     

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