Tysabri vs Gilenya vs staying on Beta

[hope32]

how did you choose? What was the deciding factor?

I know it's a very personal decision and obviously no one can make it for me, but I feel very torn right now, so I'm curious to hear some different perspectives that I may not have thought of on my own.

Back story: My RRMS has been pretty mild and stable so far. Had a pseudo-MS attack this fall but my MRIs came back clean so we're still not sure what caused those symptoms but they've abated. I saw my MS specialist a few weeks ago for my annual visit and he was really encouraging me to consider switching to G or T. He said his thinking on these drugs has shifted recently and he recommends them, not b/c the Beta isn't working for me now, but for the sake of my long-term prognosis. I have to admit, I also love the idea of no shots, but obviously T and G both have some more serious side effects so ... hence the "feeling torn."

Any insights would be appreciated.

[TLC_31]

Avonex was working for me for more than seven years. Like you, I love the idea of no shots. I took advantage of an opportunity (a phase IV clinical trial) to switch to Gilenya, but I could handle it for only 19 days, and I probably shouldn’t have stayed with it even that long. So back to the Avonex I went.

Don’t take this as a knock against Gilenya, because it does work for many people (as does Tysabri). But if the Betaseron is working, no need to rush to something else. Without the opportunity I had, I wouldn’t have tried Gilenya for several more months, if ever. If you’re in relatively good health, you have time to weigh all the factors. There seldom is any free ride with these medications.

[BigA]

These are all good questions. I read an article which suggested that moving to advanced drugs after your MS gets worse is like closing the barn door after the horse has bolted.

That said, one strange happening and an otherwise stable MRI is hardly a reason to switch to something as strong as Tysabri, IMHO.

As for Gilenya, that may be worthwhile. But ask him about the fact that Gilenya was only demonstrated to be exactly as beneficial at preventing disability as Avonex. So what would be gained, exactly?

[Bob698]

Agreed about Ty. I'm saving that as an option in case my current DMD stops working.
With G, I'm not sure what to think. One factor might be cost, even if your co-pay didn't change someone would be picking up the higher cost.
My Neuro asked me about G just before the trials ended. I said I was happy with what I was taking (Beta) as long as it was effective.

Hope, this is why we need to get educated about MS. This isn't laundry detergent we're talking about where stronger is better. What's better is what does the job with the minimal side effects and risks.

Meanwhile, we can still have flare ups. Our neuro system has been stressed and attacked. Learn to trust the MRI, its still the best tool for charting progression.

[hope32]

These are all good questions. I read an article which suggested that moving to advanced drugs after your MS gets worse is like closing the barn door after the horse has bolted.

That said, one strange happening and an otherwise stable MRI is hardly a reason to switch to something as strong as Tysabri, IMHO.

As for Gilenya, that may be worthwhile. But ask him about the fact that Gilenya was only demonstrated to be exactly as beneficial at preventing disability as Avonex. So what would be gained, exactly?

Like I said in my original post, that's not his reason; "He said his thinking on these drugs has shifted recently and he recommends them, not b/c the Beta isn't working for me now, but for the sake of my long-term prognosis." It is more the barn door illustration that you mentioned.

His explanation is that given my history over the past 10 years since my first MS attack, and how things have progressed, that if I stay on the CRAB drugs chances are I am looking at mild to moderate disability over the next 20 years. If I switch to Ty or Gilenya, my chances are more likely minimal to mild disability. Because they are more effective, he thinks they would probably give me a better long-term prognosis though of course it's an unpredictable disease but those are his best guesses based on what the latest studies are showing. He does tend to have a more aggressive approach than some MS specialists but I think it's worth considering.