Copaxone free

A board to discuss Revimmune as a potential therapy for multiple sclerosis

Copaxone free

Postby chrishasms » Thu Apr 30, 2009 5:56 pm

I just got the OK to quit it if I want to. They told me they wanted a year on the Copaxone.

I asked if I could quit and he said, "If you like it and want to keep using it go for it, if you don't like it you can quit, if your in the middle it may be a tough choice for you."

I love how he let me decide. My choice. I told him the only way I will ever know if it worked is by quitting the Copaxone and seeing if I can stay on the 2 wheels by myself so to speak. Worse case scenario I reactivate and I have to do the treatment again. That is no big deal.

So here I go again on my own...cheesy 80's tunes!
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Postby RedPenguins » Thu Apr 30, 2009 8:56 pm

Congratulations, Chris! One year out! Feeling good?

Was the choice difficult for you? How were you with the copax shots? I JUST stopped having horrible reactions....just in time to stop taking them. :)

~Keri
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Postby chrishasms » Thu Apr 30, 2009 9:27 pm

I can take them or leave them. I really just wanted off of them because I would stop feeling guilty for not taking them lol.

I feel good. I improved on the berg balance scale from a 43 to a 50 out of 56 in just over a month. I am also walking unsupported in the pool at one mile per hour for about 7 minutes but 15 minutes total walking time. I'm walking less at home in the house with my cane too.

I'm getting there slowly. We are fairly certain I may be able to walk into that appointment at JH in Sept.

That just seems impossible lol.
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Postby steven73 » Thu Apr 30, 2009 11:01 pm

Chris, believe it or not, I was on the verge of asking you if you'd been taken off of it yet! I knew you were about a year out. I was also curious if we'd be given the option of continuing should we want to. That'll be a tough decision for me. I tolerate it well and with Blue Cross/Shared Solutions eating my copay, it costs me nothing so I might, if offered, go a little longer. I don't really like doing shots, but it would suck to quit and really regret it.
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Postby mommasan » Fri May 01, 2009 5:42 am

The copaxone shots are awful for me. I have divits on my thighs and arms where my fat has been eroded from it- very unattractive. Because of this, I can only inject on my torso. They are excruciatingly painful. I have lumps of scar tissue under my skin at the injection sites. When the folks at Hopkins saw all this, they recommended continuous low dose prednisone to help me deal with the reactions. I declined at the time. I would love to stop, but am really scared of the MS reactivating.
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Postby Lyon » Fri May 01, 2009 6:00 am

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Last edited by Lyon on Sat Nov 26, 2011 1:24 pm, edited 1 time in total.
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Postby mommasan » Fri May 01, 2009 6:52 am

It's the REALLY part that I am not wholly convinced of.
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Postby chrishasms » Fri May 01, 2009 7:07 am

I am not quitting my RX. I am going to give it away for free to anyone who would give me their address lol.

I have been thinking of keeping 52 shots around. I'm kind of contemplating taking one shot per week for this year. Just as a "booster shot" so to speak for one year.

Any thoughts?
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Postby mommasan » Fri May 01, 2009 8:34 am

Chris, I am thinking about every other day. Some studies show it is just as effective.
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