Debating Tysabri

[ktalham]

I have been using Avonex for 8+ years and recently had my first relapse. They are saying that apparently it's not working now since I've developed this new sympton. I'm not 100% sold on that since no one can really tell me w/o a doubt how my ms is going to act. I'm hesitant to begin the Tysabri treatment due to the risk of PML. Mainly since my current issues are not hindering my daily life. I'm able to function as if I didn't have MS on most days. Although a little challenging to over come the new pain in my leg. I'm looking for opinions as to whether I should wait until I'm showing more symptons or start the Tysabri now? Any input would be greatly appreciated.

[Ceci]

Hi ktalham:

I was on Betaseron for seven years. It did not improve my symptoms but I did not progress either. I stopped Beta because of the side effects. Was tired of being sick to the point that I was willing to take my chances of progressing.

After two years of no meds and no progression, I decided to go on Tysabri after talking to a surgeon who was on it.

After 4+ years now, my symptoms have improved/disappeared, no new lesions, and some have shrunk or completely disappeared.

I was concerned about PML, but decided that the risk does not outweigh the benefit. A personal decision that took me a long time to make but I have no regrets.

Be well,
Ceci

[ktalham]

Thank you for your input. I feel much better getting input from someone who is actually on this treatment for over a year. Although I appreciate the doctors now in charge of my care, they are after all not the ones using the drug. I'm am about 75% sold on it now! I'm currently undergoing my first round of steroid infusions since my diagnosis and would love the chance to avoid this again.

[Ceci]

You will find that the longer you deal with this the more you'll become your own health advocate.

I had an excellent neuro for the last five years. He moved his practice to another stats recently. I was sad but I feel knowledgable enough make good decisions and to deal with any neuro whom might not be as good as he was.

Be well,
Ceci

[Special Kay]

The fact that you had a relapse on Avonex doesn't necessarily mean "it's not working." It is only known to reduce the number of relapses, not prevent them. Having said that, your neuro obviously believes you could do better on Tysabri, which is likely true. (You might also have developed antibodies to Avonex which would render it largely ineffective).

It's your choice of course. Many people have relapses while on DMDs. It's always a risk/benefit calculation only you can make.

[ktalham]

That's what I understood as well. I have recently changed drs in an effort to find a more local dr which in itself has been a challenge. I ended up going to USF (college school) after going to a local dr who didn't think I had ms at all. During my wait to get into the local elite team at USF I had the new symptoms, and off to more MRI's and yet again another firm diagnosis. My struggle is also whether that USF, being a teaching school is pushing the newest drug out there. Tough decision but, encouraging to know that people are doing well with it. Any and all input is greatly appreciated.

[Special Kay]

Tysabri is by no stretch of the imagination "the newest drug." Since Tysabri, we now also have Gilenya, Aubagio, Tecfidera. There are people on this board who have been taking it for years.

More forward-thinking neuros are now (since the Stratify test became available to assess PML risk) prescribing Tysabri for people earlier in the course of their disease, especially JCV- folks, since it is so much more effective than the CRABs. Tysabri used to be a "last resort" medication. Now they are giving it to people like me (and you?), who still don't have many symptoms or lesions, in the hope of forestalling progression.

Good luck!