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-   -   Copaxone Failure (https://www.neurotalk.org/multiple-sclerosis/112936-copaxone-failure.html)

TXBatman 01-23-2010 08:18 PM

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.

Jules A 01-23-2010 08:54 PM

Quote:

Originally Posted by TXBatman (Post 613616)
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.

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

Debbie D 01-23-2010 10:16 PM

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?

Erin524 01-23-2010 10:32 PM

Quote:

Originally Posted by TXBatman (Post 613727)
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.

Yes it would.

Lady 01-23-2010 11:48 PM

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.:)

TXBatman 01-24-2010 08:00 PM

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).

EddieF 01-24-2010 08:57 PM

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.

FaithS 01-26-2010 12:21 AM

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

TXBatman 01-26-2010 11:45 AM

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?

SallyC 01-26-2010 12:29 PM

Good luck with Rebif, TX. Yuck!


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