Should I take Tysabri for my first treatment?

[jen673]

I just saw a MS neuro at OSU hospital.  He asked me whether I was interested in being in the Tysabri study.  I am only 37 and have only had one relapse.  I know I will be deciding on a treatment and not sure what direction to go.  This neuro is big in research and he spent a lot of time talking with me about MS.  He mentioned a JC Virus and took my blood to look for it.  If I don't, I would be a good candidate for Tysabri.  It has 67% reduction in relapses but also risks getting PML.  I'm just wondering what all your thoughts are on this drug seeing that many of you have tried many of the drugs, even this one perhaps.  It's such a risky decision especially because I have three young children.  Thanks for any feedback!

Jeny

[Lulu54]

Hi Jen,
I just replied to your PM, but figure I can repeat it here as well........
Yes, I also go to OSU but see a different doctor.  The doctor you saw is very much into his research and very well respected for it.

that said, I would really question why he would immediately want to jump to the big gun of Tysabri when you are drug naive to everything.  Ty is almost always only used if the other stuff hasn't worked.  The risks are really small when you consider the large number of people worldwide who have been on Tysabri, but that is absolutely no consolation to those patients who have contracted PML, for which there is no cure.

The oral drugs also have side effects.  there is much we still don't know.

Doing injectable medicine is a pain, literally and figuratively,  but it does show good results in slowing progression.

If you have to have MS, this is a good time because of all the drug therapies available.  Do your homework and ask lots of questions before you make your choice.

welcome to the forum - this really is agreat place to learn more.

best, Lulu

[jen673]

Thanks to all of you!  You all hit it on the nail.  

I think he mentioned Tysabri just because it has the best results so far and that is what he would take.  It's tempting because of that alone.  It is a difficult decision.  I have a mild case of MS (little sensory issues) and not far along in to it.  There is so much info. out and it is overwhelming.  UGH!  It is hard to wrap my mind around it all.  In fact I'm still trying to convince myself maybe I don't have MS and described a symptom wrong, etc.  

There was research released just today about Tysabri stating that have been a total of 111 patients with PML since April 1st.  Check out this website:  http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/1905.  

He also mentioned BG-12, an oral pill, that has better results and side effects than Gilenya.  He mentioned this because I have psoriasis also and this pill could help both.  It hasn't been approved yet, but he thinks it won't be long.  I didn't know Lulu was from OH too.  I'll have to ask her about it.  

[meg321]

At one time this year we thought I might have to start Tsyabri, which I had to be tested to see if I could take it at all.  But as it worked out I was able to stay on Copaxone.

But I also signed up for the JC virus....they took blood , said I would be coming back in about a year to give them my blood....very simple. It lasts up to 2yrs.  And there is no drug treatment involved.

Is this what you are talking about?

[LATW]

I tried Avonex and Betaseron.  I am now in the Tysabri study.  

I can't tell you which way to go with this.  You may tolerate Avonex just fine and not have to live with the PML risk.

If you are worried about the PML risk it would be reasonable to try your other options first and go from there.  

I know for myself I said I would never do Tysabri because of the risk, but here I am.  

I did not tolerate the other two medications well.  I am doing much better on Tysabri.

I am 48 and still have 5 children ranging from 5-14 at home. It was a difficult decision.  

Hope that helped a little.
LA

[michelleric]

I just realized you are from OH as well.  Lulu goes to the OSU clinic too, perhaps she has some thoughts??