Positive NABs

[JonM]

Anyone have any insight on a positive NAB test.  I've been taking Avonex for about 15 months.  I have had some ongoing MS activity so Neuro ordered the NAB test and it came back positive.  I don't know yet if its low positive or high positive.  My Neuro wants to discuss treatment options.  If anyone has been through this please let me know what you did and how effective was it?

[JonM]

You're describing it to a T.  I keep a bottle of water handy with me all the time to rehydrate my throat and wash down whats back there.

[Quixotic1]

Hi, Jon.  that's interesting.  A lot of drugs induce binding antibodies.  Like Copaxone, which induces them by the hundreds apparently.  However, none of them affect Copaxone's function.  What is important is whether the antibodies block or neutralize the biologic action of the med that is important.  So what your doc is planning makes a lots of sense.  Keep us posted.

I find it amazing how many of us have swallowing difficulties.  Coordination of the swallow is governed by the cranial nerves and MS can hit the cranial nerves hard.  It sounds like you are having trouble farther back in the pharynx where we deal with our secretions, like the congestion whe cough up from our lungs or which drains down from the posterior naso (nose) pharynx.  I wonder if the spit issue is that there isn't usually enough of it to make a good "bolus" to wrap your muscles around.  Does that make sense?  Can you swallow your saliva with a tiny sip of liquid?

It maight not be a bad idea to have a "cine-swallow study."  This is often done under the guidance of a speech pathologist or ENT and the watch the swallow mechanism and coordination under fluoroscopy.

Is Speechgeek still with us, or anyone know how to reach her?  I bet she could answer this.  I'll loave her a PM.

Quix

[JonM]

Thanks for the well wishes.

I found out today that (my Nuero speaking now), I am positive to binding antibodies but negative to blocking antibodies.  This may be his way of saying its low.  I asked about the titer and he said 0.  Told me to stay on Avonex and retest in August.  If I increase on the blocking side, which he said may happen then I will have to look into another therapy.
He said that this is the typical pattern of developing the NABs and that I could go either way at this point.

My only real annoying issue now is weakness swallowing.  Its not so bad that I'm having issues eating or drinking or gettin **** in my lungs, but I cannot swallow my spit or congestion for the life of me anymore.

[Heather3418]

It's so good to see you post on the Forum again.  You have been missed.

Boy, you developed antibodies quickly.  I was on Avonex for three years and never had a positive NAB test.

I think that Quix's gives some great insight in her post.  As you know, she is well trusted and knowledgeable about these kinds of things, due to her unrelenting research.

I hope that you will keep us updated Jon.  Again, you have really been missed.

Best Wishes,
Heather

[Momzilla]

Hey, Jon!  Good to hear from you!

I wish I knew what you were talking about.

Just wanted to say I hope you're feeling well and that this helps with your treatment.

Take care!

Zilla*

[sllowe]

Hi Jon,

I'm no expert by any means, but from the information I have, it would be in your best interest to know if the antibodies were on the high, or the low side.  Can you get the counts? I was told that it's like a 2 step process.  First the pull the antibodies, then separate the NAB's, get the counts etc.  Your results should include this information.  It's the only way you and your Dr are going to be able to make some decisions.  

Sorry about your recent activity.  Major relapses? Or, increased changes, etc.

SL

[Quixotic1]

Hey, Good to see you.  I realize that you likely have a life and can't be here all the time, but I often wish for your input on stuff.  My doc and I discussed the NAB test, which he says costs about $800) when I was having a flare up in January.  Once the antibody forms, the immune memory for it would be very long, probably lifelong, and it's titer would only climb.  That's how the humoral (antibody) system generally works.  So if the NAB was at all positive, I would think you move along off the Interferon.  This is JUST my best guess.

I know my Neuro would opt straight for Tysabri or Novantrone, with a preference for Tysabri.  I haven't asked why not Copaxone.  In my reading Copaxone induces a lot of antibodies against it, but none have been shown to "neutralize" its effect.

My bias against Novantrone is that it is total-lifetime-dose-limited because of its cardiotoxic effect.  This limits it to about 2 to 3 years of use.  I would be asking about the use of regular IVIG (gammaglobulin infusions).  nd I would be asking about some of the studies that are in Phase III (just prior to final approval).

I know you asked for experienced views, but, as you know, I'll offer anyone anything at any time.  I should get a life, too.

Quix