every other day

A board to discuss the Multiple Sclerosis modifying drug Copaxone

every other day

Postby shaight » Fri Aug 23, 2013 1:41 pm

I've been on the eod plan for ten months now with no relapses. I went this route due to swollen lymph nodes.

The past few months I've increased to both weekend days and eod mid-week.

Sometimes this disease just makes me wonder that when the time is right it will just rear its ugly head just as it hides in the darkness no matter what we do to prevent it.
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Re: every other day

Postby sophie447 » Mon Aug 26, 2013 8:53 pm

Hi Shaight, I also took Copaxone EOD. I debated it for a long time and it might sound not so serious, but decided that every day was just too much of an disturbance into my life. Of course, if you believe Copax will make a huge difference then it's a different story. But for 30% reduction in relapses... I figured I would take my chances!

But I am now in a not so comfortable place, as just from last year, 2 new lesions. Adding up to 2 lesions the year before and the 2 initial ones, the doc is recommending I try some other med. Not enough Copaxone or just not effective... we'll never know.

And what he is proposing is hard to swallow... if I might say. He is proposing Tysabri, Gilenya of Tecfidera 8O ! And I tought I wasn't really sick!! I kind of decided on Gilenya, but might just change my mind. So hard to feel like I am making the right decision.

Anyway, I wish you the best with that course of treatment. AS you probably know, there is a bit a serious reserarch showing that EOD is just as effective as ED.
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Re: every other day

Postby shaight » Tue Aug 27, 2013 7:56 am

Sophie -

how do you feel clinically? I stopped getting mri's as my last one was depressing yet I did not feel any worse clinically. I think lesions will come an go and as long as you feel ok then that's all that matters.

At the point I begin to slide clinically is when I will pursue HSCT. There has been way too much sucess going that route to ignore. Via the FB page it is one sucess after another.

Best of luck to you moving forward also!
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Re: every other day

Postby sophie447 » Tue Aug 27, 2013 12:26 pm

Your plan sounds very wise and probably a lot better than mine I guess.

Clinically, I feel just fine except for residual numbness on the sole of my feet and neuropathic pain to match. Other than that, I sure don't feel like my brain is getting any sharper, but that probably has more to do with being an overworked mother, professional and volumteer worker :-D :-D :-D .

Than you for your response and best of luck to you too.
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Re: every other day

Postby Loriyas » Fri Sep 06, 2013 12:51 pm

For what it's worth:my neurologist mentioned at my last appointment that it is his opinion that Copaxone is under dosed at its current 20ml. (daily)
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Re: every other day

Postby sophie447 » Sat Sep 07, 2013 3:59 pm

Ummm. Go figure!
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Re: every other day

Postby plethora » Mon Sep 09, 2013 11:38 am

Instead of skipping every other day, I usually only skip 12 hours at a time. I usually do the shot in the evenings, but will skip a day and then do the shot the next morning. Then, after a day or so I go back to evenings, 36 hours later. This way there are no more than 36 hours between shots, but I still get a little bit of a break.

The other advantage to this is that some places are better to do in the morning. I am a side sleeper, so I always do hips in the morning so I don't have to sleep on a new Copaxone bump right away. Legs I prefer in the evening, so my keys aren't hitting the shot site all day.

Good luck!
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Re: every other day

Postby Cammie » Sat Sep 21, 2013 9:04 pm

I was very, very sick before starting Copaxone. After a year of a shot every day, I started skipping one shot a month, to have a little reprieve. I am hoping soon to start skipping one shot a week, but I am too afraid to skip every other day. My initial MS symptons were terrible, immensely painful, and I don't want to take any chances on having them come back. Maybe after I have been on Copaxone for several years, I will feel confident enough to try it.
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