Question for Avonex veterans...

A board to discuss the Multiple Sclerosis modifying drug Avonex

Question for Avonex veterans...

Postby CBRoberts » Thu Jan 27, 2005 1:33 pm

What type of protocol does your neuro have you on for blood tests re: liver function, neutralizing antibodies, etc.?
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Protocol response

Postby SlowI » Thu Jan 27, 2005 8:55 pm

Great question. I look forward to the other responses.
My answer - none. I've been on Avonex for 8 months.

You didn't mention your answer!
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Postby MOMTO3 » Fri Jan 28, 2005 3:26 am

I ALSO HAVE BEEN ON FOR 8 MONTHS, AND HAVEN'T HAD ONE TEST DONE.
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Postby LindaR » Fri Jan 28, 2005 6:22 am

I have been on Avonex for almost one year and I go for a blood test every 4 months. I'm not sure if he checks for antibodies but I do know he checks for all of the standards liver, kidney, etc., stuff.
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Postby HarryZ » Fri Jan 28, 2005 7:30 am

MOMTO3 wrote:I ALSO HAVE BEEN ON FOR 8 MONTHS, AND HAVEN'T HAD ONE TEST DONE.


Per LindaR's post, you should be having blood tests done around this time frame. I just don't understand docs that prescribe this kind of potent drug and then don't bother to follow up like they should!

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Postby LindaR » Fri Jan 28, 2005 7:39 am

I found that you really need to be your own advocate. My original neurologist (which was at Yale's MS Clinic) told me he wanted me to go for blood tests every 3/4 months. I then went to another neurologist (at another well know MS Clinic) and told him that I was probably due for a blood test and he said that it wasn't really necessary....I pushed and said I wanted one...needless to say I don't see him anymore. Now the neuro I go too also believes in tests every 4 months.

Don't wait for your doc to tell you....you need to tell him you want the test.
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Postby CBRoberts » Fri Jan 28, 2005 8:24 am

I'm getting ready to start my third month on Avonex and nothing has been said about bloodwork yet. That's why I posted the question. For those of you who are tested...does your neuro order and evaluate the test or your PCP?
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never had any blood tests before this new doc

Postby batpere » Fri Jan 28, 2005 11:00 am

My original doc didn't have me checked for the first 5 years that I can recall (although that's not saying too much :-), but my new neuro started me on regular blood tests after she added CellCept because I was still have relapses and lesions. She also had me do the expensive NAB test ($995 - be sure to send in the 20% liability-limitation amount because the insurance wouldn't pay more than $256.66 and the testing company says you will be responsible for all the insurance does not pay otherwise). Glad to see that it came back negative.

After initially having my blood tested every 2 weeks, I'm down to once every 3 months while I'm still on the CellCept. Which is supposed to be stopped when the Tysabri starts - maybe this month???
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Postby LindaR » Fri Jan 28, 2005 11:52 am

My neuro orders the blood tests for me. Generally I see my neurologist every 6 months. I keep a journal and mark on my calendar when I am due for a blood test. When the time comes, I call my neuro and then pick up the paperwork for the test.
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Re: never had any blood tests before this new doc

Postby HarryZ » Fri Jan 28, 2005 12:45 pm

I would hope that your neuro who is going to prescribe the Tysabri has your NAB's checked out within the first 3 months of starting on this drug.

Approx 9% of Tysabri users end up with high level NABs and 6% end up having to stop taking the drug because of this. The NABs are showing up within the first 3 months of using the drug. That data comes from 2 of 99 world-wide Tysabri trials where they used only one year data of the two year Phase III trials. The data from the remaining 97 two year trials won't be available until April or May of this year so we don't know if those figures will remain the same or change.

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Postby MOMTO3 » Fri Jan 28, 2005 12:53 pm

NOT TO SOUND TOO STUPID HERE, BUT WHAT ARE NAB'S?
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Postby HarryZ » Fri Jan 28, 2005 1:37 pm

NABs are neutralizing antibodies. Your immune system decides that the Tysabri (or an interferon) is a bad guy and sends out antibodies to make the drug's effect totally useless. If allowed to build up in your system, NABs can cause some problems besides just making your medication ineffective.

With the interferons, the NAB level often return to normal and the problem goes away on its own. Sometimes it does not. With Tysabri the NAB's appear to show up a lot more quickly, usually within the first 3 months. That's why doing blood tests are important with these drugs.

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