Living With MS

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

Wednesday, August 06, 2008



My Tysabri Diary...

I just returned home a little while ago from my 24th Tysabri infusion... nothing new to report other than there was a terrible accident coming home from the infusion center, and having to sit quite awhile in traffic pretty much wiped me out. So I'm going to go to bed early tonight after Ray (my caregiver) returns with the pizza (I'm already sipping my mudslide, yaaay!) <---- laughing.

I asked my infusion nurse if there had been any changes in the number of Tysabri patients they were infusing, if any had dropped out, or if they had added anymore... she said that everything was "status quo", and that all of the patients were doing very well on Tysabri and had absolutely no complaints about the medication (remember, this is a very small infusion center)... she did tell me that she noticed my MS has been stable since I've been going there to receive my Tysabri infusions, so this is a good sign :)

I haven't really checked many of my e-mails because I am really superduper tired, but happy and pleased that I still experience zero side effects from this medication. I can only hope and pray that other patients are loving Tysabri as much as I am.

I am also please to hear that most MS patients & neurologists are not swayed at all by the recent PML reports in the two European Union patients..., it is my understanding that Biogen/√Član (the manufacturer/distributor of Tysabri) is holding approximately 20 different Neurologist Conference Calls through the end of Friday this week to update them regarding the situation, and answer any questions that they might have. I am also please the most of these neurologists (I hear) have not changed their minds at all about Tysabri, and they are still very excited about Tysabri's prospects for their MS patients in need, while they are becoming very aware of the need to continue in their vigilance of observing their patients and monitoring them closely... I don't ever remember my neurologist closely monitoring me when I was on Avonex & then Copaxone... I like being monitored closely, it makes me feel not only safe, but closer to my neurologist :)

Have a great evening everyone,


((((hugs))))

Love, Lauren :)

3 Comments:

  • At 8:29 PM, Blogger ms'er faith said…

    You raise a good point. On Copaxone, they don't monitor the chest tightening that occurs, and I had it so severely that I almost went to the ER.

    I'm glad to know Tysabri has worked for you and so many others. I decided not to go on it because my MRIs were so odd--if you look at those, they're the same as when I was diagnosed, so who knows why my MS progresses at times.

    I wish for you to keep stabilized, but maybe at some point to improve, and I enjoy reading your monthly updates!

     
  • At 8:42 AM, Anonymous Anonymous said…

    Dear Lauren,
    deb here in arlington.
    I was scheduled for my 20th tysabri infusion and had to reschedule. I have had shingles for 6 weeks. not contagious..I know it is from Stress! family type.
    I want you to know I have had only good experiences from the Tysabri. I worry now as I miss my dose to 'fill up my tank'
    I will get back to discuss what I want to do with my neuro in 2 weeks.

    Tomorrow I leave on a vacation that has been planned forever.

    Please send me the positive spirit that surrounds you-- and with my strong Faith--- I will be just fine.
    sorry i haven't been in touch.
    lotsa love
    deb/VA

     
  • At 4:26 PM, Blogger Vic said…

    Good for you, Lauren!

    I hope that you enjoyed that pizza!

    I agree with you, my neuro team and the statisticians: The percent of PML cases relative to Tysabri use is insignificant statistically.

    I go for another infusion on Wednesday.

    Thanks for keeping us updated on your progress.

    -Vic

     

Post a Comment

Links to this post:

Create a Link

<< Home