Batman -

copaxone failure or any other drug "failure" is really not an expected term. Not with MS.

I know you're in the mildly impacted group of this disease (sorry - a personal observation). So just put up with me on this...

I was dx'ed prior to all these lovely drugs being available. I had a dramatic increase in lesions as shown up on MRI in 2005. I mean - from less than ten to over 30. It scared the bejesus out of me. I actually started taking copaxone - which lasted less than 30 days.

Hey, I've had MS for 22 years. Let's get together and compare how much this disease really affects our lives. I'm of the opinion that it doesn't really affect our lives all that much with cases like ours.

You'll probably be riding in the BP150 this year. I'll be in Memorial Park checking in riders and slamming down beers prior to the event (hey - priorities...). Is there a concern about increased lesion count? My dramatic count jump was 5 years ago. Ask me in 20 years if it matters. It don't matter now. I don't know what adding years would do to influence my conclusions.

You live in Houston, right? Want a tour of Johnson Space Center? Not that tram type tour, but a real tour where you can actually be IN the mission control rooms and flight simulators and shuttle simulators and all that crap?

What I can show you - you would feel like you had the presidential tour. Just not during mission - next shuttle mission is 2/7-2/19. I'm not supposed to take people into mission control during mission.

MS sucks. Try to forget about it. What the hell else can we do?

Tom

I believe sometimes the treatments can be worse than the disease. Many say Copaxone has the least amount of side effects, but I have had more side effects on it, than I ever had on Betaseron. At least you wont be poking everyday anymore, and will have every weekend off the drugs.

Many have flu like sx in the early days that goes away as your body adjusts to the drugs.

Some have pink spots around the injection area that can last for a few days after the injection.

Many take the shot at night. Take some Advil, or Aleeve, and wait an hour. Take your shot, and go to bed. That way you sleep thru the worst of it.

Im so sorry Copaxone didnt work for you. it is scary when they start pulling drugs away and telling you that its not working. its not like we have dozens to choose from. Hang in there.

I question how a Neurologist can even make that assumption (copaxone failure) when the drug only has a 30% chance of delaying progression. That's a pretty low number.

Plus, it's not the number of lesions you have....it's where they're located that matters.

I am getting pretty disgusted at the Neurologists and big pharma who have a financial stake in the approval of MS treatments. It's almost like they don't want us to ever be "totally OK"......because that would mean a loss of revenue for them.

I also wonder if you've had an increase in symptoms...

Thanks for all the responses. Let me clarify how the Neuro meant what she said. I asked her if it was normal for a few new lesions to show up from time to time on CRABs, and she said yes. But she said it isn't within the expected profile to see a big jump in the numbers from one year to the next (Mine went from around 7-8 to around 15 or so...so basically it doubled in 12 months). She said that kind of a jump indicates the drug is failing in that it isn't controlling the increase in lesions.

As for the symptoms, I have had a lot of mental stuff going on...memory issues, slight confusion, etc...but nothing overtly physical other than periodic fatigue. She and I agree though that the next lesion might hit something I care about, so I would prefer to see no new ones at all...hence the change in meds. She termed it a Copaxone failure...but what she meant was that it wasn't doing what it was supposed to for me and I was one of the ~70% for whom it was not effective.

And Tom, yes, I am riding the MS150 again this year...just did training ride one in the Conoco Phillips series...37 miles out by Katy Mills Mall this morning. Rode faster than I ever have...so even if I have more lesions, at least the spin classes are paying off. Part of it was I was riding angry at MS and the Copaxone for not working...wish I could channel that feeling and use it to go faster every time.

I still have your card and I am planning to call you for that tour when my nephews are in town next time. Will probably be June/July timeframe.

Thanks again everybody...I feel better this morning...I was just kind of anxious and unsure of things after I left the doc's office yesterday. Whatever will be will be and I will just roll with it...

I just have to say that I'm totally jealous that you live in Houston and got invited to go tour Johnson Space Center.

I was a space geek when I was younger...probably still am a space geek. I just dont have everything memorized like I used to.

Would it make you more jealous to know that I grew up about 10 miles from there and went to school with a bunch of the astronaut's kids? And had a dad who taught the Apollo astronauts geology? I have about half a room still full of boxes from his house that contain various Apollo program memorabilia and such.

This makes very good sense to me. Good luck with the change.

was a girl Space Junkie in my girlhood-had put together models of both Mercury & Gemini models. I always found the space program fascinating... Along with Egyptian history, UFOs & other weird things that "normal"girls didn'care about.
Anyway, does yr Neuro think that the increased lesion load might have produced the increase in cognitive dysfunction?

Oh, sorry to hear that. For me, Copaxone works much better than Betaseron did, but, we're all different.

Not on Rebif, but is very similar to Betaseron, which I used to be on.

• Also a sub-Q shot, not a honkin' big IM needle like Avonex.
• Prob has an auto-injector, if you prefer that.
• Won't likely get the same site reactions (eg: welts) as you might have from Copaxone. Maybe some blotches that soon disappear in less than a wk.
• Every other day, instead of daily.
• Also burns going in, I've heard. Betaseron usually doesn't.

~ Faith