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Unread 11-26-2012, 08:10 AM   #1
yeti
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Been awhile, I hope you all are doing well! So since I last posted a few months ago I've been playing the drugs game. Having some mixed results.

Gapapentin (generic neurontin): I was given this for some horrible trigeminal neuralgia. The first 2 weeks of this drug were hell. Not only did it not work at first, it made me so loopy and dizzy and sleepy I pretty much was in bed for those 2 weeks. Then, suddenly, I had zero side effects and the face pain completely went away. My verdict on this drug is that it is a miracle pill once I got over the initial adjustment problems. I'm sooo happy this one is working.

Avonex: Despite my doubts, I went forward with the avonex. The injection part was terrifying to me, but went really easily. In fact, I'm on the pen now after doing a month of the pre-filled syringe while they titered my dose but I think I prefer the straight injections. So that part actually went a lot better than I expected. However, the flu symptoms are just unbearable. Much, much worse than even my worst fears. The first night is horrible chills and uncontrollable shaking. It gets a little better after that, but I have fever and chills for over 48 hours after taking it. The body aches also last over 48 hours. It is absolutely horrible stuff. If I don't start adjusting to this, I don't think I can keep taking it. I've tried advil and aleve to counter the flu symptoms, but not having much luck. I'll keep experimenting with some other OTCs and keep hoping the side effects lessen, but I am not feeling good about this med at all.
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Unread 11-26-2012, 01:06 PM   #2
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I hear you Yeti.. I gave Avonex 7 months to wait for the flu to get better, but it only got worse.

Glad you're back home.
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Unread 11-26-2012, 01:38 PM   #3
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Thanks Sally. I'm hoping the flu will ease, but if not then I can't see staying on this. The trials showed it was, what, about 30% helpful over placebo? Something around there. Well if I'm giving up 2/7ths of my week, that's nearly 30%. I have to ask, what's the point if it continues this way?

Really, really happy about the gabapentin though. I can't understate that. The TN was horrific and now its just gone.
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Unread 11-26-2012, 08:50 PM   #4
Debbie D
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Thanks for the update. So glad to hear the gabapentin is working for you.
I've always been averse to trying a ones and rebid due to their side effects. I'm blessed that Copaxone seems to be working for me.
Have you discussed Copaxone with your neuro?
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Unread 11-27-2012, 08:04 AM   #5
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We're giving the avonex a little more time, but if it doesn't let up soon we talked about 2 other options: Copaxone and the new Aubagio. He doesn't want to give me Aubagio until its been out a little longer, but we'll reassess if/when I give up on the avonex. Copaxone is looking like the next step, if I can get over the daily injections.
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Unread 11-27-2012, 02:10 PM   #6
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My neuro told me that next year Teva is coming out with new injections of Copaxone that will only require 3x/week injections...can't wait!
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Unread 11-27-2012, 08:48 PM   #7
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Debbie- I have been wondering if the site reactions will be twice as big!

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Unread 11-28-2012, 12:27 AM   #8
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the C injections really aren't so bad.
it's not an IM shot, it's subcutaneous so the needle is small. if you were self injecting the other i think you'll be fine with C.

you get into a routine and get used to the daily shots. i had site reactions for about the 1st yr but it gets better and better. use ice and it helps. i was using the autoinjector but actually found manual injections to be better.

glad the TM is gone.
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