Switching to Tysabri after 10+ years on Avonex

[cremmins]

I was diagnosed with RRMS in 1999 (age 26) and immediately started Avonex. Between 1999 and 2010 I had four flares. None of them were major and they were all successfully treated with Solumedrol.

I stopped the Avonex in 2010. I got lazy and complacent, but I did talk about it with my neuro about it and he said after 10 years that the Avonex probably did all it was going to do so it wasn't a problem stopping it.

In March of this year I had a pretty bad flare. It was treated with Solumedrol and most of the symptoms have gone away but not all. I re-started the Avonex and have more Solumedrol infusions planned. Now my neuro wants me to go on Tysabri (I am JC negative).

I don't know how I feel about it. I thought the Avonex worked for me and I tolerated it well. I also know that there were no long-term side effects (at least after 10 years). I know Tysabri is the best drug available now, but I worry about long-term effects. Also, I have read that stopping the drug (for example if one becomes JC positive) can lead to a nasty relapse. Also, even though I am JC negative, there is a risk of PML since I was previously on interferons.

Has anyone moved on to Tysabri after being on Avonex for an extended period of time?

[cremmins]

Also, this is the email I received from my neuro after I expressed my hesitations about Tysabri and my desire to stay on Avonex:

>> I just reviewed your records again to clarify some of your points and provide further guidance

1. You actually experience 4 relapses on avonex so you were not exactly stable. You had not relapses in the last few years on avonex but then again, relapses decreaase naturally over time

2. You are JC virus antibody negative; this means you have NO risk of PML. If you are not scared about PML at this moment, you shouldn't be scared about PML if you were to start tysabri.

3. Tysabri is a far better treatment than avonex. This is something we all agree on. It virtually shuts down the disease completely.

4. Patients have only a limited period of time to shut down their disease. Most of us agree this interval is approximately 10 years (+/- 5 years) from onset.

Now if you understand all these facts and still do not want to start tysabri, this is fine.
Hope your holiday is going well <<

Some of the stuff he is saying I have never heard before - specifically that relapses decrease over time and that there is basically a 5-15 year window to shut down the disease. I'm not saying that these points aren't valid but this is the first time I have heard them since I was diagnosed 13 years ago.

[Redwings]

Also, even though I am JC negative, there is a risk of PML since I was previously on interferons.

That statement requires clarification. PML requires the presence of the JC virus. By definition, PML is the unchecked proliferation of the JC virus. If you don't have the virus, you cannot develop PML.

Interferons don't/can't give any risk of PML if the causative JC virus isn't present. In your situation, the risk of PML comes from the possibility of a false negative JC antibody test or the possible acquisition of the virus during your Tysabri treatment. But if/as long as you're truly free of the JC virus, it's impossible for you to develop PML and you have no risk from prior use of Avonex.

[Mable]

Wow Cremmins,

Thanks for posting your Neuro's letter. It's nice to see it all spelled out so clearly in one place.

Comparing your experience to stories I hear about people who had the disease 20-30 years ago, I find it comforting that neuro's today have so little tolerance for disease activity.

[cremmins]

Redwings, thanks for the clarification. I was thinking that the prior use of interferons could allow the JC virus to rear its ugly head while on Tysabri more rapidly than if there was no prior interferon use. Obviously this is not the case.