Have tested positive for tysabri antibodies

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mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 3/26/2008 1:19 PM (GMT -6)   
I am so upset right now that I can not stop crying.  I just heard from my neuro's nurse that I have tested positive for the presence of antibodies. Basically this means that my system is "probably" neutralizing the effects of the tysabri and it may not be working at all or to a lesser extent.  I guess I should not be surprised considering my reactions to to other DMD's and reactions during ty infusions.  He wants me to continue with 3 more infusions and then be retested for antibodies once more.  So I guess I'll see how my next infusions goes next week where they are going to premed me with a benadryl iv and slow down the infusion.
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3523
   Posted 3/26/2008 1:26 PM (GMT -6)   

Oh Barb,

I am so sorry!!!! I am just sick that you are so upset!!! What do they do now??? Hang in there, dear friend.  You have really struggled with med reactions and it has been a long hard row to hoe trying to find a drug that works for you.  I am praying for you.  Please let me know if there is anything that I can do for you. 

Love and prayers,


Gretchen       co-moderator MS board       diagnosed with MS July 2006


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/26/2008 1:31 PM (GMT -6)   
O Barb!!

I'm so sorry!! Dont give up on it just yet tho...sounds like he still holds out hope. Maybe this is a false positive?? Hang on sweet friend. We are all here with u and keeping u in our thoughts and prayers. Please let me know if u need me at all...i'll be here.
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?*


uppitycats
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Date Joined Jun 2005
Total Posts : 2135
   Posted 3/26/2008 1:42 PM (GMT -6)   
I'm really sorry -- but do go through with the additional infusions! Indeed, sometimes these tests do come back as a "false positive", and sometimes a repeated test will have very different results.
 
I don't know much about Tysabri at all..but I know that for the interferons there are antibody tests, and a lot of confusion...some doctors think the "positive" results mean the patient should stop the drug, others are as convinced that it doesn't mean anything.  You might ask your doctor for his thoughts about what it does mean to him, and what he'd advise...but then, maybe you already have a sense of that, as he's having you continue anyway.
 
I hope this all gets sorted out for you.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Sunnycitrus
Regular Member


Date Joined Apr 2007
Total Posts : 334
   Posted 3/26/2008 2:36 PM (GMT -6)   

Barb,

 

I’m so sorry, and I hope you are okay. I am worried about you, and hope you have someone with you right now. Please contact me anytime if you want, I am around. Hang in there….

 

Sunny


Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 3/26/2008 2:56 PM (GMT -6)   
Barb

I dont blame you for being so scared or upset and im so sorry! I'll be praying for you as i am at this very moment.

I'll pray that the benedryll infusions provide what is necessary and that this indeed is a false positive.

You are such a sweet person and I can understand how scared you must be, but please dont allow this to trigger other things (hard not to do)...

I hope and pray that this all turns out to really be false and that you will recieve great news and relief soon!

your in my prayers


kiera
Every day brings us closer to what we reach for .........in all things.
 
Kiera


Sweetlydia66
Regular Member


Date Joined Mar 2007
Total Posts : 260
   Posted 3/26/2008 3:38 PM (GMT -6)   
O shoot Barb,
I am so sorry the blood tests came back positive. Keep the faith Barb. Maybe it is a false positive If he wants you to continue 3 more times. Please know that you are in my thoughts and prayers. You'll be fine. I know its easy to say, but your strong Barb. It'll work out for you!
Love
Lynn
Dx MS Dec 06, Started Tysabri March 2008, Baclofen, Cymbalta


mystery reader
Regular Member


Date Joined Jun 2007
Total Posts : 257
   Posted 3/26/2008 3:49 PM (GMT -6)   
Thanks everyone for your messages. I don't know that there is such a thing as false positives. I do have antibodies at this point, but they can be transient and disappear in the first 6 months.
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 3/26/2008 4:00 PM (GMT -6)   
mystery reader said...
Thanks everyone for your messages. I don't know that there is such a thing as false positives. I do have antibodies at this point, but they can be transient and disappear in the first 6 months.

Well, that's what I mean by "false positives" -- that they're transient, and can (and often do) disappear.  In any event, I hope you can continue on this treatment.  Take care!
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


pokey79
Regular Member


Date Joined Aug 2007
Total Posts : 144
   Posted 3/26/2008 7:44 PM (GMT -6)   
Oh Barb hang in there and get this straightened out an i hope and pray for you as well keep strong.........barb
diaganosed 1983
avonex once weekly
steroid infusion every three months for three days
mycoline three times a day
fosamax once a week
bladder meds. daily
calcium/multivitiams
synthyroid
 
 


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 3/26/2008 10:03 PM (GMT -6)   

I'm so sorry to hear this Barb, I too am hoping it's transient.  I don't blame you one bit for being upset about this, how frustrating after all you've been through.  It's out of your control though, and I hope you'll let us know how the next infusion goes.  We're all cheering for you.

Take care,

Shar


Diagnosed with MS April 2006
 
Started Tysabri Nov. 2007


pchristine
New Member


Date Joined Mar 2008
Total Posts : 4
   Posted 3/28/2008 7:22 AM (GMT -6)   
Hi there...
 
Today is my first day here...and I dont really understand "antibodies" to Tysabri - although would greatly appreciate understanding what is happening with you. I can totally "feel" your distress and will pray for you - and would love to get to know you more - email   My first treatment was just this last month and I went from not walking nor writing to doing both although in a very weak state. The improvements have been dramatic and I am "jonesing" for my next treatment. I am sharper mentally...and I know this drug is helping tremendously....even though there have been side effects to some degree.
 
Please write if you can...much appreciated.
 
Christine
 
 
Christine, I removed your e-mail.  I don't want you to be wide open to rampant spamming.  Please list your e-mail in your profile.  If you dont' know how to do that. Please e-mail me by clicking on my name, off to the side, where I have posted.  I can walk you through how to list your e-mail in a safer way.  Welcome to the board!!!!

Post Edited By Moderator (Gretchen1) : 3/28/2008 11:44:05 AM (GMT-6)


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 3/28/2008 9:41 PM (GMT -6)   
Hey Barb
 
I posted this in another thread but wanted to put it here to u as well. I"m not sure it'll be worth the read, but hopefully!
 
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 3/29/2008 6:51 AM (GMT -6)   
Christine,

I responded to your post in the Hi Christine thread. Barb
Barb/mystery reader
Diagnosed April 2007
Started tysabri -- December 2007


LetTimeHeal
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/10/2012 10:12 AM (GMT -6)   
Thanks for sharing such a difficult situation. I think you are doing great just by talking with everyone here. You have helped me. Take care

dimplesrgr84u
New Member


Date Joined Jul 2012
Total Posts : 1
   Posted 7/16/2012 6:44 PM (GMT -6)   
i have been on tysabri for 5 years, and have just found out i too have tested positive to the antibodies. my neuro that i've been seeing for only a year had no suggestion on what i should or shouldn't do next. i actually contacted a neurologist I saw for years while living in tx. i trust this dr. more so than any i have ever seen. yes it could be a false/positive but why take that chance. my heart goes out to you, i understand the frustration and the fear. but after a long discussion, i felt like it was kinda like airing up a balloon, one or two more breathes, the balloon may pop, why chance that??? i have been on every m.s. drug, and i'm actually allergic to the tysabri. it's all well and fine for someone who hasn't tested positive to say continue, but the chance that the pml increases with each infusion, just isn't worth chancing it for me. i will keep you in my prayers. michelle
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