Is my med working?

[truelove47]

Hello everyone

I have been taking avonex for 10 years or longer(cannot remember)

Prior to that beta seron until I had no where  left to inject because of bruising  Dr took me off beta

I was wondering, How do you know if the med  is still working?

I read about neutralizing anti-bodies and how they render the interferons inaffective or useless

This test appears not to be routine.   Has anyone had this test? Is it a blood test and is it expensive??

Thanks for any input.                                                                                            Linda

[JonM]

I have had two NAB tests.  One last spring and the other last fall.  I have been on Avonex for 26 months.

My Neuro suspected that Avonex may not have been working, and ordered the first one.  It came back positive for binding but negative for blocking antibodies.  He said we will retest but be prepared it will likely  be positive/positive next time

Well next time came and it was negative/negative.  So I'm still on Avonex.  He didn't have an explanation of why my positive 6 months later became a negative, so who knows.

He explained that the antibody is a molecule made to attach to the interferon molecule.  He described the interferon molecule as sort've a sickle shape.  When the antibody binds to the interferon it can do so on the peripherary of the molecule, thereby not nuetralizing it.  or it can bind inside the sickle so-to-speak rendering it useless.

You should also know that there is a belief among some neurologists that positive NABs doesn't mean to stop taking interferon or that it has truely been neutralized.

As far as really knowing whether Avonex is working, well thats honestly a SWAG on the doctors part, since there is no definitive test or sign for this.

Its very possible that we could be experiencing our MS with no benefit from the Avonex and perhaps its mild or slow or quiet right now, who really knows.

We just put faith in the studies that showed a 30-40% better course for those who did than those who did not.

Jon

[sllowe]

Yes, now that you mention, he talked about that too.  Not all of them bind, and important to pull those out (binding vs non-binding), and the less binding the better (I think).  

Maybe we are on our way to that health page truelove suggests.  Will have to put this on our to-do list.  

[Quixotic1]

I understood from my neuro that there is indirect evidence that at least some of the binding antibodies render the med ineffective.  This evidence is drawn from seeing an increase in relapses and symptoms and finding the binding antibodies in these people.

This means that the binding/neutralizing antibodies are more likely to be found in someone in whom it seems that clinically the med has stopped working.

The idea of neutralizing antibodies is not new.  This is a know phenomenon in other areas of medicine and is one of the things at work with allergy shots.  In some types of allergy shots you work at developing a neutralizing type of antibody.

Quix

[Heather3418]

To answer your question-I took Avonex for three years, so I DO know what it's like to take it.  I am now on Copaxone because my body never adjusted to the flu like side effects.  I was expecting them to diminsh over time, like most other Avonex users report, but my body just said no.

Heather

[truelove47]

Thank you for responding. You  answered a lot of my questions,

Again, I would not be happy about taking this med if it was not working,  iIt is

difficult to tell.   I do trust my neuro and feel he is a very knowledgable doc

I do feel I am in good hands

A health page on this topic would be great.

these are not typos, just bad spelling
lol   Lessons, i need or maybe a dictionary     Linda

[sllowe]

Hi there,

I'd love for JonM to add to this too.

I had the priveledge to speak to the Dr. here in NJ who discovered interferon.  He's considered the "Father" of interferon.  He saw it "work" in the lab a very long time ago.  Was quite an experience - one that I'll always cherish.

I spoke to him about NABs and he went into detail with me about the antibody test, how they 1st have to extract the antibodies, and then further identify the binding versus the non-binding.  He was specific in saying that not all of them bind.  From what I remember, that is actually a good thing.  

It's a technical process, and the convo was detailed.  I chatted w/ to JonM afterward and I will look for that message if I still have it because it was more descriptive since it was fresh in my mind.

It's important to recognize what Quix describes when she says it has no affect on the med.  It has not been proven at this time if once we develop the NABs that it renders the med useless.  It's moreso important to be evaluated clinically, through imaging and attacks in order to make a determination for a medication change.

Hope this helps, and I'll look for that convo...
-Shell

[Quixotic1]

Hi, the test for neutralizing antibodies is done only by a few labs in the country and not all of them give reliable results.  My neuro will only use Athena Laboratories in Boston.  The test costs $800 (as of last August).  Sometimes insurance won't pay for it.  I am on Medicare and had no problem.

The test is not done routinely, but should be run if there is a suspicion that a medication has stopped working.  So, if the person is having more relapses than before or the MRI is looking much worse, then that would be an indication to run the test.

For Avonex it is unusual to develop neutralizing antibodies before you have been on the med a full year.

A neutralizing antibody is an antibody that our own immune system can make.  This antibody binds with the med and prevents it from exerting its needed action.  It truly neutralizes the medication.  We often make antibodies directed agains our DMD.  For the greatest part these have no effect on the action of the med.  Interestingly Copaxone seems to stimulate the most antibody production, but none of these antibodies have been shown to neutralize the Copaxone's effectiveness.

Of the Interferons, Betaseron is the most likely to stimulate neutralizing antibodies.  I think the number is as high as 40%.  Rebif is the next most likely with something like 23%.  Avonex is the least likely with an incidence of NA's of less than 10%.  The problem appears to be dose-related.  Betaseron is the highest dose, Rebif next and Avonex the lowest.

Once you have neutralizing antibodies to one of the Interferon-beta meds, you have it to ALL of them.

If JohM is around, he has doen the most research into this problem, if I remember right.  I hope he steps in and adds to or corrects this.

This should probably be a Health Page?

TL - Surely there is a happier medium between zombiness and excrutciating pain...

Quix

[truelove47]

Thanks, I do have the liver function test done, but only read of the NAB's lately

I have to get my head out of the sand.    I am so afraid of tysabri (SP) I think that is why

I keep myself ingnorant  Recently my spasms are unbelievable.  I keep telling myself

it will be alright (mind over matter) I think I am Ready for baclofen pump I have A CHOICE,,,Take meds and be a zombie  or  move and be in horrible pain(spasms)                                   Be well                  Linda

[Lulu54]

hi Linda,
Heather is so right that you should be having your liver tested.

I just checked a reference and it says that NAbs, if you are to develop them, would appear 12-18 months after starting the Avonex.  You are definitely overdue in getting this blood test done.

Do you feel that your MS has progressed or gotten worse recently ?  I really don't know how long you stay on a drug until it is no longer effective in your body.......... anyone?

my best,
Lulu

[truelove47]

I did not know that i should have been tested for neutralizing anti-bodies nor if it was a  

routine test, but I will definetly ask next time I see him.  

I  do have the liver enzyme tests done at least once a year

I would really not be a happy camper if I  were using this med avonex in vain

Are you taking it?  If you are than you know It is no fun,  Thanks for responding to my

post. This is another issue that was been bothering me,            Linda

[Heather3418]

Your Neuro should have checked you long before now.  I also hope that he has been doing regular blood work testing to check your liver enzymes every six months, while being on Avonex.

I think it's time to ask your Neuro to check you for the neutralizing antibodies now.  I don't know the cost, but it IS a blood test.

All the best,
Heather