Tysabri - first infusion today

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photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/27/2007 6:53 PM (GMT -7)   
Hi all,
 
I said I would let you all know how it went...it went well :-)
 
The nurse was really nice, she found a vein and was successful on her first try... phew!  The infusion took an hour and then I had to wait one hour to make sure I didn't have a reaction... I didn't... soooo relieved!!  The next appts, every month, will only be one hour total.
 
The only side effects I've had so far are a bit of a headache, and I felt somewhat lightheaded and "funny" while I waited the hour after the infusion.. so I went back in and she took my blood pressure, it was 150/86.  I'm pretty sure however, that was from my anxiety about feeling funny.  The next check was back to normal.
 
The nurse told me that she sees 15 patients every month, and none of them have had a relapse since being on Tysabri.  Everyone has seen at least some improvements in their symptoms.  She also said patients really start to feel it when they are getting close to their next infusion, their energy starts to go back down and they want it.
 
I'm feeling really hopeful about it and can't wait to see what happens.  Even if I don't see huge improvements in my current symptoms, just getting these relapses under control would be great!!!  I always worried the next relapse would be the one to leave me with major disability, as the Betaseron just wasn't enough for me.
 

:-) :-) :-)

Shar

 
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 11/27/2007 7:27 PM (GMT -7)   

Yay Shar!!!! I am so, so happy all went well today, and wish you the very best on this med! tongue


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 11/27/2007 8:19 PM (GMT -7)   
WHEW SHAR!!!!! Wow!!! I'm so glad to hear all went so well and u'r doing so good!!! Thanks for the update and please let us know if there's any change in how u'r feeling. Take good care!!!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*
 
Things that make u go hummmm......
*I wonder how much deeper the ocean would be without sponges.*
*One day without sunshine is like...um..well...night?*


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 11/27/2007 11:41 PM (GMT -7)   
Yeah Shar!  I am so glad it went well.  Did they predose you with benadryor tylenol?  May I ask you in what city do you receive your treatment?  Please let us know how you continue to feel?  Barb

Barb/mystery reader
Diagnosed April 2007


Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 11/28/2007 12:54 AM (GMT -7)   
Shar, I am so proud of you, good job!!!  Keep us posted.
 
Co-moderator for Multiple Sclerosis
 
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uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 11/28/2007 7:53 AM (GMT -7)   
I'm so glad that went well for you!  Do keep us posted as you continue with this. I think lots of folks are watching the Tysabri and trying to decide on using it. 

...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3550
   Posted 11/28/2007 5:37 PM (GMT -7)   
Yay Shar!!!
 
I am so excited for you!!!!  I am hoping you feel great on this drug and you see a real difference in your progression.  Keep us posted. 
 
Love and prayers,
 
Gretchen
Diagnosed with MS July 2006
Co-moderator MS forum
 
I was strongest when I laughed at my weakness.
Elmer Diktonius
 
 
 


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 11/28/2007 6:10 PM (GMT 0)   
Hi Shar,
I am so happy for you that everything went well for you. Please let us know if you feel any different. What i read,  some patients felt different right off the bat and others it took a while and some no different. As long as it slows the progression, that all that counts, but feeling a little better is a plus too!Please post and let us know. I am considering this myself, just can't make the decision as of yet. Good Luck!!
Love
Lynn


Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta

Post Edited (Sweetlydia66) : 11/28/2007 6:11:45 PM (GMT-7)


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 11/29/2007 3:20 PM (GMT -7)   

Hi everyone.. thanks for all of your kind words and encouragement!

Barb - no one mentioned anything to me about predosing with Tylenol, but I think that's probably a good idea.  I got a mild headache while receiving the infusion which apparently is common, so the nurse did give me one then. 

I'm in Vancouver, BC.  I think I'm going to ask to go to another infusion center as this one was in a back room of a walk in clinic and was sooo small!  There wasn't even room for my fiance to sit with me, and the poor nurse kept stepping on my feet!  Another patient came in for an infusion, and having only one IV pole, the nurse had to tape her meds to the wall above her head!  Certainly less than ideal.

I didn't get any blood work done, but I had just had some done by the infectious disease specialist I saw, so maybe that was all they needed.  I did have an MRI done (neuro wanted it within a couple months of starting Tysabri) just to make sure I had no signs of PML.

The evening of my infusion I didn't feel great.. I went from very awake to very tired and a bit dizzy/lightheaded so I went to bed early.  I guess flu like symptoms can happen the first couple days, I did get a bit achey and had some minor chills, but nothing an Advil didn't take care of.  I felt kind of "funny" in the head, but with my anxiety I never know what's what.... it's better now though.

Let me know if you have any more questions, and I'll keep you all posted :-)

Shar


Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron

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