Question for Avonex veterans...

CBRoberts · Newbie Joined: Jan 07, 2005 Posts: 5

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

SlowI · Getting to Know You... Joined: Jun 17, 2004 Posts: 13

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!

MOMTO3 · Family Member Joined: Jan 06, 2005 Posts: 36 Location: NY

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

LindaR · Posted: Fri Jan 28, 2005 7:22 am Post subject:

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.

HarryZ · Posted: Fri Jan 28, 2005 8:30 am Post subject:

LindaR · Posted: Fri Jan 28, 2005 8:39 am Post subject:

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.

CBRoberts · Newbie Joined: Jan 07, 2005 Posts: 5

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?

batpere

My original doc didn't have me checked for the first 5 years that I can recall (although that's not saying too much Smile

, 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???

LindaR · Posted: Fri Jan 28, 2005 12:52 pm Post subject:

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.

HarryZ

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.

Harry

MOMTO3 · Family Member Joined: Jan 06, 2005 Posts: 36 Location: NY

NOT TO SOUND TOO STUPID HERE, BUT WHAT ARE NAB'S?

HarryZ · Posted: Fri Jan 28, 2005 2:37 pm Post subject:

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.

Harry