Don't want Copaxone....

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Don't want Copaxone....

Postby Miss_Feisty » Tue Dec 08, 2009 11:55 am

Hello,
I hope someone can help. I really don't want to take the copaxone, I am willing to take my loses without crab drugs (aka the 70% it won't work).

Tried rebif with horrible side effects and I'm tired of introducing all these foreign substances to my body. Maybe I'm making a mistake, but no one knows my body like I do.

My neuro is a big believer and encourages the crabs, he looked at me like I was insane when I said no, point blank.

I am looking for reputable links/information to support my decision. I had previously read about many side-effects etc. that turned me off, but I would like a study showing effectiveness.

Any assistance appreciated. I'm off to print off side effects.
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Postby LR1234 » Tue Dec 08, 2009 12:16 pm

I have also said no to crabs but I am taking supplements, doing the best bet diet and taking LDN. I have the copaxone sitting in my fridge and dread the idea that one day I may need to take it.
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Postby LoveActually » Tue Dec 08, 2009 1:40 pm

I googled "Copaxone Studies" and came up with many results. You can weed through them and see what you find.

Effectiveness of Copaxone from the horses mouth - http://www.copaxone.com/consideringcopa ... icacy.aspx

Effectiveness of Copaxone from a TIMS member -
http://www.thisisms.com/ftopict-818.html

I believe side effects are going to vary from person to person but many people I've spoken to have only experienced the site injection reactions. You know your body better than anyone else so you definitely need to do what you feel is best for you.

Good luck with your decision.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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ABC's

Postby Aaron » Thu Dec 10, 2009 9:06 am

Hi,

You didn't mention how long you have been dx'd.
I personally was dx'd in June of '96 and I have been on all the ARC drugs, I started with Avonnex, then my doc switched me to Rebif, (claiming 'studies have shown, blah, blah, blah....'). I HATED the side efects of both of these drugs. The intense cold spells and once a week hangover with Avonnex, three times a week with Rebif. :!:

I just ended up not taking the Rebif anymore because I was always feeling sick and week.

I switched to Copaxone. What a difference!

Copaxone has virtually NO side effects, (maybe a small bump at injection site).

I had to stop Copaxone for about a year and 1/2 while I particpated in a drug trial, (the ill fated MBP 8298/dirucotide trial). During that time span I went downhill quickly. It got to the point that I had to purchase a four wheeled walker to keep me upright.

I have restarted taking Copax and 1mg of Naltraxone as of October of this year. My strength is starting to come back, but I am still walking with a cane, (I was able to ditch the walker). :lol: Incidently, Naltraxone doesn't work with Avonnex or Rebif.

My advice is, if you have insurance and can afford it, by all means
take the Copaxone!!

I had a slight limp before I stopped taking it, and thought that was the worst thing it the world. As it turns out I was doing very well and I had no idea how bad it could get without the drugs.

Be well,

Aaron
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Postby LoveActually » Thu Dec 10, 2009 8:10 pm

Aaron,

I agree with you. Although I've only been on Copaxone for a little over a month, I much rather deal with site reactions than flu-like symptoms every few days.

For me the choice was, go with Copaxone or go with nothing.

Happy to hear you ditched the walker. I hope your health continues to improve.
October 29, 2009 - Dx with RRMS
June 22, 2010 - Dx's changed to Devic's (NMO)
January 4, 2011 - Dx w/Syringomyelia T4-T9, Migraines, and Possible MS (again - long story)
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Postby RedSonja » Thu Dec 17, 2009 6:05 am

It takes a few weeks to get used to Cop, but after that it is a real sweetie.
Bibo ergo sum
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Postby Miss_Feisty » Thu Dec 17, 2009 2:39 pm

Thank you all for your replies, appreciated.
It's a difficult decision with any med.

Thanks for being here!
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Postby hoziemary » Fri Dec 18, 2009 6:58 am

I have been on Copaxone for almost a year. It has really been easy and I have had great results. My husband does my arms and hips and I do my stomach and thighs. I ditched the autoject long ago but it helped me get over the fear of injecting myself at first. I thought injecting everyday would constantly remind me of being sick, but now it is just part of my routine. No biggie. The shots hurt less and less as you do it.

I don't blame you at all for being hesitant. Once I had my first attack, it took me about 9 months to come to grips with it and actually do something about it and get on medicine. Good luck!
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I hear you!

Postby pager » Mon Dec 21, 2009 10:14 pm

Miss Feisty, I hear you and understand your position. I am taking a break from Copaxone after diligently dosing daily for six months due to hives. If Copaxone doesn't work, I am not sure if they will give me the others due to my history of depression.

Only you know your body and there is no right or wrong answer, in my opinion. You have to make the best decision you can with the information and knowledge that you have at the time. That is all any of us can do. And, we can't look bad and say we should have or shouldn't have...it accomplishes nothing. (Okay, easier said than done, but I am working on that!)

LA, thanks for the links...I am going to check them out. Glad to hear your injections are going well! :-)
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Postby Vhoenecke » Wed Dec 30, 2009 10:57 pm

Been on Copaxone since March 2009. No side effects. Just some site injection welts. Not sure if it does anything but my neuro says it keeps me out of the chair longer. Whatever I'll try anything as long as it doesn't make me feel sick.
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