Confused! Copaxone or LDN?

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Confused! Copaxone or LDN?

Postby Slumby » Sat Feb 06, 2010 1:03 pm

Hello everyone.
I need to decide between copaxone or Ldn.
I can add one or the other, later on.
I have a neuro appt. soon and I'm going to ask for one or the other before my visit is over. He prescribed LDN for me 2 years ago (I think I only took it "between a WEEK a month?), so he might give me Ldn again. I will bring quality lit. for him just in case he needs a refresher.

I have been waiting for a pill since 1999, when I was dx. At that time, I tried a 9-mo. run of Avonex. Not looking forward to going on an injectible again, or site reactions, but at least it's subcutaneous and it might help to know that a pill is coming. If I do start copax, it'll be an every other day thing. I'm 5'6", 100lbs so I'm temped to make it every 3 days.

I'm starting to progress quite a bit within the last year or so...and this about as far as I "want" to progress...I'm only in a wheelchair on outings. Maybe it's a flare, maybe I should ask for a round of steroids before anything else to find out. I'm afraid that the Ldn won't have any effect and in the meantime, I will progress even further. Copaxone seems to be the "safe" route. I don't have time to play around and experiment any more.

On one hand, copax has trials behind it, on the other it seems Ldn is being investigated for many neuro dis-eases. Shabby reasoning there.
But what if copax doesn't stop it either? Maybe I should wait and see about the walking pill. These are the excuses I come up with so I don't have to deal with the fact that I'm actually going to ASK for an injectible.

The decision as to what to ask or notask for will continue to be up in the air until I'm actually there in the office, talking to the neuro.

Thoughts?
Thank you.
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Postby Lars » Sat Feb 06, 2010 1:20 pm

Slumby,
I have been taking LDN for nearly a year and have been super happy with the results. That said, I am starting to develop progression and I am considering the Copaxone route. I think Copaxone is the one injectible that you can actually do WITH LDN. I will ask my Neuro to be sure. On a separate issue, I have been so into investigating MS therapies in general that I haven't broken it down to specific symptoms. I am having huge cognition problems lately. Is anyone aware of a medication that targets that?
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Postby Slumby » Sat Feb 06, 2010 1:47 pm

Thank you, Lars. This helps alot.
Yes, Copaxone is the only one to take with Ldn; it's notan interferon.
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Copaxone& LDN

Postby madman » Mon Feb 08, 2010 1:26 pm

I have been taking both for five years. Doing great. In the grand scheme of things it is beyond me how people are so concerned about the feared "site reaction" of Copaxone. Yes there is a site reaction and my life goes on. Slow the progression of MS or short lived 15 minutes of discomort HMMM?
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Postby lilsis » Mon Feb 08, 2010 1:33 pm

my sister was offered copaxone as well, she has decided to try minocycline for a while first and if it doesn't seem to halt progression then may move on to copaxone. she seems to be fairing pretty well so far, so we'll just keep our fingers crossed. i have a client with ms (i'm a registered massage therapist) who has been taking copaxone for 12 years or so. it's worked very well for her, very few side effects if any at all, but she does know of people who experienced many side effects, including hair loss. she chose copaxone because it doesn't stay in the body for very long and is broken down quickly, that's why it's a daily injection. so if you are thinking you can get by without doing it daily, i would encourage you to clarify this with your doctor.

we had read that a promising study was done with minocycline but for the next phase the protocol was changed to include copaxone. my sister's neuro gave the explanation that the change was most likely due to less favorable results for those who were in a more progressed stage, that these people needed something stronger than just minocycline and that's why copaxone was included. i thought i'd share this with you, for whatever it's worth.
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Postby Loriyas » Mon Feb 08, 2010 1:43 pm

For what it is worth, I have been on Copaxone for 7 years and LDN for I think 3 years. I have had no difficulty with either or the combination.
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Postby foreignlesion » Mon Feb 08, 2010 1:49 pm

Lars,

I was prescribed Amantadine for fatigue, which I find it hasn't helped, but I find it very valuable for cognition. Without it I just fade away.
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Postby Slumby » Tue Feb 09, 2010 11:38 am

I think I'm in SP phase, not RR, but I'm not sure. Will steroids really give me the answer?
And if I am SP...does that get me off the copaxone hook? :) Not the best way to look at it, I guess.
The anecdotal evidence I've seen makes me want to do it...the clinical evidence re: efficacy is...well, a little questionable.
But this forum has already helped and Ken's sting reduction method will be useful.
So...steroids, I'll bring it up to the doc, but I wonder what sensible, non-neuro people think/have experienced.
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