Starting Copaxone soon and freaking out!

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Starting Copaxone soon and freaking out!

Postby Shaka » Wed Feb 24, 2010 6:42 pm

Terrified to start Copaxone. I am like my 11 year old when it comes to getting shots. I did do Avonex for about 9 months five years ago and I hated it I would drink Wine and Xanex before every shot. I can't do that every day, I actually don't ever really drink it makes me so sick now.

I have put this off for 6 years because I was first diagnosed with MS and then Nuero Lyme after 8 positive lyme tests, now my Lyme Drs have me on antibiotics for C. Pneumoniae. After I was treated for Lyme I did recover for 2 and half years and even had an almost clear MRI.

After having a baby and stopping antibiotics I have 13 new lesions in new spots have lost alot of function in my legs. Now I am scared and have talked to a couple Lyme Drs who say its time to start Copaxone they all think it is definitly auto imuune now.

I want to do everything I can to stay on top of this. But after signing the form yesturday aggreeing to start Copaxone the anxiety is already raging in me.

Any advise would be greatly appreciated.

Thanks!
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Postby Loriyas » Fri Feb 26, 2010 10:58 am

Do you have the autoject? If not, then ask for one. That makes it easier to give yourself the injection. You just load up the needle and then push the button. I have been doing it for 7 years. It will get easier for you.
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Postby LR1234 » Fri Feb 26, 2010 11:08 am

Is it worth going back on the abx? It sounds like you still have Lyme rather than MS
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Postby patientx » Fri Feb 26, 2010 5:54 pm

Shaka,

Your question was specifically about Copaxone, and I can tell you it's not that bad. I do both the subq shot everyday, and the IM once a week. Compared to the Avonex shot which you have seen, the Copaxone shot is nothing. And the suggestion about the Auto-inject is a good one (I don't think they have one for Avonex, at least the does both the injection and pushing the plunger). The Autojet makes things much easier.

But beyond that, you mention in your post the opinions of the Lyme doctors you have seen. Have you seen a neurologist, or even an MS specialist?
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Postby sonia52 » Fri Feb 26, 2010 6:32 pm

Don't panick Shaka. I was afraid too when I decided to accept Copaxone. It was my first treatment. I've been diagnosed in 1980, and I began Copaxone in July 2001.

Yesterday, they have published results of a 15-year study on long-term efficacy and safety of Copaxone. More than 80 percent of patients were able to walk unassisted following 15 years of treatment and average disease duration of 22 years. In my mind, it's wonderful.

I'm no more afraid of injections. Now it's like brushing my teeth before going to bed. I tried the autoject at the beginning, during a couple of weeks, but I don't use it anymore, because I find it "brutal". But, you'll find what is better for you, and you'll become familiar with it, like all people who have an injection treatment.

Good luck to you!
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Postby Shaka » Fri Feb 26, 2010 8:39 pm

Thanks everyone for the for the reasurance. Yes I have seen 4 Nueros my current one that I like is a MS Specialist. When I was Diagnosed I had 11 lesions in brain and spine, and had O'bands in my spinal fluid. And was having a new symptom about every 2 months.

I have also seen 2 LLMDs and 2 local Infectious Disease Drs even with my 8 positive Lyme tests they always say Lyme isn't around here and from my symptoms it is MS. Exept for the LLMDs say it is Nuero Lyme. One of my LLMDs is a Nuerologist too and he believes at this point its been 6 years and it has turned into MS.

I can not afford to travel everytime I need a Dr so I stick with my MS Dr who I really do like she just says even if it was Lyme I don't treat that. So I am ready to accept it is both. And treat both with Copaxone and Antibiotics. Seems like it is the safest choice for me and I will feel like I am doing everything I can to help my body.

I hope this converstaion doesn't offend anyone I am not on the Copaxone board to push a Lyme agenda. I am just here to read your experiences and advise. Nobody knows more than someone who has done it.

My Copaxone Nurse called Yesturday we talked forever she was really great.

Now just the wait of insurance approval and it showing up!

Thanks again for reading.
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Postby patientx » Sun Feb 28, 2010 10:35 am

Shaka:

No offense taken here. It sounds like you've done your homework, and gotten plenty of input. And covering all your bases is a smart thing to do.

Don't sweat the Copaxone injections. As long as you manage to inject into some fat tissue, you hardly feel it.
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Postby nicko » Sun Feb 28, 2010 8:36 pm

I've been on copaxone for 8 months now. Previously i was on rebif. I do find copaxone much harsher on the body at the injection site. I usually get some mild pain and swelling. The first 6 months i had to use a ice pack after each injection. But its calmed down now.

Stick to a strict rotation and it seems to go easier. I still have to often skip my left arm in the rotation because it seems to be very slow at healing. Could be something to do with it being purple all the time, lol

I've had a few minor things happen, hitting veins and getting some nice size bruises. But nothing to make me stop using it.
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