Copaxone Failure
 

That is what my Neuro called it today after she saw my latest MRI. The radiologist's report said "significantly greater numbers" of lesions showing up on the MRI, and the neuro concurred. I asked if it was normal to see some additional lesions appear, even on CRABs, and she said some...like 1 or 2...but this many she would call a "Copaxone Failure".

So I get to start Rebif in a couple of weeks once the insurance stuff gets worked out. Any thoughts on what to expect or what I should know that the literature or Rebif nurse won't tell me? Thanks in advance...

All of the literature I have seen indicates that these CRABS show about a 30% rate of delaying progression, so you might ask the nurse how much help the Rebif could actually be for you.

Those percentages would be a long shot on a Vegas table.

gmi

Are your symptoms increasing? If you're stable symptom-wise, then I don't see the significance of a few new lesions on the MRI?

I just started Copaxone again a couple of months ago so I can relate somewhat...

But nevertheless, Rebif is excellent and I'm guessing you'd do good on it anyway. :) It's stronger than Copaxone and if that's what you need, then so be it. Thank goodness we have these options.

Just wanted to wish you well. I think its so important to try something, anything to help us fight this miserable disease.

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. :hug:

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. :rolleyes:

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?

Yes it would.

Hi TXBatman,

Sometimes lesions are very small, so tiny that they don't show up on MRI. Maybe you had them all along and they are just a bit bigger now so they show up on MRI. Also did you use the same machine, with the same Telsa and had GAD? Used a closed MRI machine?

My point is maybe you didn't get *New* lesions since the last MRI, but they are just showing up now since they are big enough to be spotted. Also some fade, or remyelinate. My question is was the new ones or any of the old showing enhancement? Did they glow as if they were inflammatory active?

If not, they might be old ones just not seen before. I wish you luck on the Rebif. Those flu-like symptoms can take you down a notch. I was on Avonex and my body and liver could not tolerate the drug. I was with fever and chills for days. I was switched to Copaxone. No flu-like, but other problems with it.

So instead of saying, you are a Copaxone failure, the doctor should have called you a non-responder to Copaxone, or with other drugs they say you do not tolerate them. Failure is not word to ever be used by medical professionals. JMO

Good luck to you. I hope the Rebif helps.:)

I asked about that, because it was a new machine. However, it was the same tesla, a closed machine (as was the old one), and the "old" one was already seen as one of the best machines in Houston. When I asked about it, she said that the "new" lesions were quite distinct and in new locations, and the old scan showed no hint of anything there before. Her opinion based on the change in resolution around the previously existing lesions was that the new ones truly were new and it was not just a change in resolution from the machine that made them visible.

She actually took me into her office and we looked at the scans on her computer monitor and after having it pointed out to me what she was looking at, I tend to agree with her.

As for her opinion on the cognitive issues, she said they could be causing it, but she advised against doing any further cognitive function testing (I had a baseline before I knew I had MS for other reasons) until I have a reason to need to know. She said such testing can be used against you by insurance companies, employers, etc. and it is better not to do it until you need it to prove something yourself (such as SSDI claims).

How many years were you on Copaxone?
I took it for 2 1/2 with great results then I started progressing..rapidly.
My mri after that time had some new, some looked to fade slightly.

I went to Rebif.
MAKE SURE you take 2 Ibuprofens (advil) 1/2 hr before shot.
Even with the titration pack (small dose).
Took me 2 months for aches the day after shot to stop coming.

Went back to Copaxone, Now im on Tysabri which im still going downhill on.

I think Termidor pesticide did me in.

I want Estriol to try in the worst way.

Cheers and hope it works for you.

Thanks Edife and Faith. I have been on Copaxone for just over 3 years. I am looking forward to not having to do a shot every day, but now the big problem is going to be how to remember which days to take my shot... As they say on the ADHD forums, what do we do to remember to take the medicine that helps us remember to do stuff?

Good luck with Rebif, TX. Yuck!

Most folks do it on Monday, Wednesday, and Friday. Some switch it up if they have strange work schedules, or would rather be fluish on Sat, not Monday kinda stuff.

When I was on Betaseron, I used those gold star stickers on my calendar. when I did my shot, I got a gold star! or a horse sticker, or smily face sticker. If I looked at the calendar and no sticker was there, I knew I missed a shot.

Many good calendar programs on the computers, and cell phones now. You can set them to do a pop up on shot days.

3 years is long enough to know if the stuff was gonna work or not. I would have been surprised if she pulled you at 6 months, or even a year, but 3 is more than enough. Feel better! :hug:

I am thinking I will do something like Sunday, Tuesday, Thursday or something like that. With my longer training rides on the weekends, I would rather feel crappy during the week than when I need to get up early and ride long distances.

Actually, I was referring to the Rebif schedule of 3 days a week vs the Copaxone daily schedule.

k

~ Faith