Have tested positive for tysabri antibodies

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,

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.

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

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.

Oh Barb hang in there and get this straightened out an i hope and pray for you as well keep strong.........barb

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)

Christine,

I responded to your post in the Hi Christine thread. Barb

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