My Tysabri Update

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photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 3/10/2008 10:09 PM (GMT -7)   
Hi everyone,
 
I thought it was time to post how I'm doing on Tysabri.  It's going well!!
 
I had one infusion, then had to miss 2 months due to appendix surgery in which time I had a relapse.  With that being much better, and then having 2 uninterrupted infusions behind me, I'm really excited about how I'm feeling on Tysabri.
 
- legs feel stronger
- more energy
- thinking more clearly
 
After being off of work the past 8 months with relapse after relapse, I'm planning my return soon and am very excited about it.  I'm very hopeful this will stabilize my MS and let me get on with my life :-)   I think I am the perfect candidate for this drug, as I wasn't responding to Betaseron, and having many relapses with residual symptoms everytime.  I was really unhappy about the road I was on and was losing hope about getting some control over MS.  I feel so fortunate to have this drug available to me!!
 
Hope you all are well,
Shar
 
 
 
 
 
 
 
Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


1mom
Regular Member


Date Joined Feb 2008
Total Posts : 69
   Posted 3/11/2008 5:18 PM (GMT -7)   
I'm so happy for you!! I don't know your history, can you enlighten me ?My son started with Rebif,(2years) but still had a severe relaspe, they switched him to Copaxone , now its been a year,,,will see MRI in a month or so, but he doctor said if its not working well enough , hes putting him on Tysabri.I was going to ask you the other day but deceided to wait, since you brought it up? also what problems do your relaspes bring?
its not how hard you get hit,its how hard you get hit,and keep moving forward, that how winning is done. 
                                        Sincerely,1MOM


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 3/11/2008 7:58 PM (GMT -7)   
Hi Shar,
I am so excited for you. YEAH!! I am so glad your feeling better. I cannot wait till i get started. This is great news. Thanks for posting. I hope you just keep feeling better and better everyday.
Love
Lynn


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


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 3/11/2008 8:20 PM (GMT -7)   
Hi 1mom and thanks!!,
 
Hmm.. where do I start?  My history isn't very long, I was diagnosed just under 2 years at age 30 with multiple symptoms and lesions on my brain and spinal cord.  MS runs in my family.
 
I was on Betaseron for about a year and a half, during which time I still had relapses about every 3-4 months.  Maybe they were less severe than they would have been?  Each relapse has left me with residual symptoms.  My relapses usually start with a burning skin feeling, followed by numbness and severe fatigue, then loss of coordination or some weakness follows.  I have been fortunate in that I have not had a major relapse, just lots of them. 
 
I felt way better after coming off of Betaseron, and now even better on Tysabri so far (fingers crossed).  I'm hearing now that not everyone is actually feeling better on it, but I don't think that means it's not working well, as it's main job is prevention just like all the other MS drugs.
 
Hope that helps, if you have anymore questions pls ask, and I wish the best to your son with his MRI results.
 
Shar
 
 
Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 3/11/2008 8:22 PM (GMT -7)   
Thanks Lynn!!  I can't wait to hear how you're doing once you get started :-)
Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/11/2008 8:27 PM (GMT -7)   
WOW SHAR!!!!!!

I"m so so excited for u!!! Thinking of going back to work!? That's just great!!! I can't believe the transformation and can't tell u how happy i am for u!! Keep going friend and keep letting us know how u are!
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?*


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 3/12/2008 12:02 PM (GMT -7)   

Shar, all I can “say” is :-) :-) :-) ! You’ve really been struggling, and I am just delighted to hear this kind of update!

 

Sunny


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 3/12/2008 1:45 PM (GMT -7)   
Shar, I also wanted add my kudos to all of the others. Hope you continue to do well.

Barb
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007


1mom
Regular Member


Date Joined Feb 2008
Total Posts : 69
   Posted 3/12/2008 4:39 PM (GMT -7)   
Shar, my son is also 30 years old.Starting into the 4th year now.1 year dx was brain tumor then CSI.2nd year 1 more leision=dx-MS.he never really has any relaspes until last year,it hit his brain stem in Jan.the lesion was so huge the MRI showed it covered 3/4 of the brain stem.mm away from paralizing him. so..they aren't fooling around.We will go right to Tysabri.The thing is the last MRI 6 months ago was remarkable but @ that time he was starting Copaxpone so he had been doing rebif x 3.Copax X 7..weekly.(to make sure he was covered)I quess what i'm wondering was it because he was on both meds, that the MRI was so good?The last 6 months its been Copaxone..I talking out of my nerves right now. I know you don't have that answer. but need to vent. He doesn't get those small mutilple lesions,he gets larger ones, but only a couple @ a time.(Yearly)..MRI coming soon,getting nervous, But if they say Tysabri, thats what we are doing.Again its reassuring  for me that you are doing well!!!!!!!! :-)

photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 3/12/2008 6:52 PM (GMT -7)   
How quickly things can change.

After posting last night my leg started to feel funny, today it's burning. Great! Relapse # .. I've lost count! I'm so frustrated. I have an appt with the neuro about my return to work, which I guess is not going to happen just yet. I just had a relapse less than 2 months ago.

I'm guessing 2 infusions is not enough to reach Tysabri's full effectiveness? Or I overdid it because I have more energy, or.. who knows. I found this article which may explain it. Apparently having one infusion then going off for a couple months may not be a good idea. Great timing to need my appendix out and interrupt everything. Could I be rebounding? ARGH!! I was really looking forward to going back to work, and now I get to wait and see some more. Thanks for all your replies, you are all very sweet. I'm still hopeful about Tysabri and don't regret going on it. Just feeling unlucky.

http://www.medpagetoday.com/Neurology/MultipleSclerosis/tb/6674
 
(mod note: i just activated u'r link)

Post Edited By Moderator (rhondab) : 3/12/2008 8:24:33 PM (GMT-6)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/12/2008 7:27 PM (GMT -7)   
Hey Shar

Well fooey!! Don't get down about it tho. Keep at this and let it get back into u enuf to see some real results from this med. I think the combination could be u'r culprit...not enuf infusion, doing too much too soon with the new found energy. Hang in there friend and get thru this. I have a feeling u'r going to get back to that good place in time again. Take care friend.
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 3/13/2008 7:13 AM (GMT -7)   
Shar,
Sure hope you are not experiencing rebound effect. You may just be feeling the effects of doing too much. That being said I am experiencing increasing stiffness in leg and feeling more tired on some days after my last infusion. I am also having problems sleeping again which may be why I an tired. Hopefully, I am not developing antibodies. Guess I will know more in 2 weeks.
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007


1mom
Regular Member


Date Joined Feb 2008
Total Posts : 69
   Posted 3/13/2008 5:42 PM (GMT -7)   
Please try and stay positive, I hate when people say that but...we're all out here hoping the best for you..Try and rest and don't stress to much about it. Maybe you over did it alittle..,and stressed your body.I don't know but,I have faith you'll get thru this.
Can anybody tell me what the rebound effect is? Thanks Deb
its not how hard you get hit,its how hard you get hit,and keep moving forward, that how winning is done. 
                                        Sincerely,1MOM


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 3/13/2008 5:59 PM (GMT -7)   
Awwww Shar,
You hang in there! Maybe its nothing, just a bad day. Try and stay positive Shar, it'll work out. This ugly disease, geesh......
Keep us updated.
Love
Lynn
Dx Dec 06, Rebif, 44 mcgs 3 x wk, Baclofen, Cymbalta


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 3/14/2008 7:47 AM (GMT -7)   
A recent study has suggested that for patients that were only on tysabri for a few months and then has to stop treatment that the number of lesions significantly increased.

Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007


1mom
Regular Member


Date Joined Feb 2008
Total Posts : 69
   Posted 3/19/2008 5:14 PM (GMT -7)   
Dear Shar, I was thinking of you..u..ok
its not how hard you get hit,its how hard you get hit,and keep moving forward, that how winning is done. 
                                        Sincerely,1MOM


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 3/19/2008 10:27 PM (GMT -7)   
Hi Deb,

That was sweet of you to think of me :)

I saw my neurologist yesterday actually, and she recommended I delay returning to work for a couple months until I am more stable. I don't disagree with her, so I am staying put for now and looking into hobbies! It turned out I didn't have a new relapse, it was a pseudo flare, so that's good news. She ordered an MRI in a few months time to see how I'm doing on Tysabri, I saw the last report, it just said "numerous" lesions, I guess they gave up counting? lol

Please let us know how your son's MRI and follow up appt go.

Take care,
Shar


Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007

Post Edited (photogirl1358) : 3/19/2008 11:43:22 PM (GMT-6)


1mom
Regular Member


Date Joined Feb 2008
Total Posts : 69
   Posted 3/20/2008 6:16 PM (GMT -7)   
Thanks Shar,Good, stay home and relax,plenty of time for work...I'll let you know,upcoming news.Deb
its not how hard you get hit,its how hard you get hit,and keep moving forward, that how winning is done. 
                                        Sincerely,1MOM

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