CAN I GET SOME POSITIVE FEEDBACK RE: COPAXONE?

[Angeldifferent]

I'M VERY ANXIOUS TO START ANY SHOTS...BUT HAVE DECIDED TO GO W/THE COPAXONE. MOST TIMES I ONLY SEE NEGATIVE ABOUT ANY OF THESE TREATMENTS.

I WOULD LOVE TO HEAR SOME POSITIVE FEEDBACK ABOUT COPAXONE, IT WOULD GREATLY HELP SOME ANXIETY HERE. (AND YES BEEN VISITING THE NEWBIE BOARD TOO) LOL

THANKS ALL FOR ANY HELP : )

[MarkLavelle]

Reading internet bboards is definitely the best way to find all the scariest stories -- smart of you to reach out to us boring cases...

I've been injecting C for 8 months, and I've never had any of the dramatic reactions you tend to read about online.

In the beginning, I did get the bee sting reaction every time, but it never lasted more than about 10 minutes. Now, I don't even get the sting every day (maybe 4/7).

The one slightly weird thing that's happened a few times is a feeling like I hit my funny bone, only milder.

P.S.: Step AWAY from the CAPS LOCK!

[Michele48]

Just started Copaxane. 2nd injection. Alot easier than I thought. Just a little sting, some rednes. Take it one day at a time. I had to work up my courage to inject. The Auto-inject makes the injection so much easier. If you are nervous about the first infection, have somebody your trust do it or at least be with you when you inject. Good luck with the injections. I will pray for strength for you.

[Mable]

I've been on Copaxone for almost 6 months.

When I started out, my aunt went through training with me (the pharmaceutical company will send a nurse to your house to train you for your first shot). Then, my aunt held my hand and had the phone ready to call 911 every night for the first week. Pretty soon, I got sick of all the fuss and just started shooting myself in my room.

It's no big deal. I've never had the panic attack reaction you hear about. I'll get my first post Dx MRI in the next couple weeks, but it doesn't feel like I've had any new disease activity. If anything, I'm feeling much better today than when I started. But of course, when I started I was just coming out of a big flare.

I've heard from several people whose disease is stable and who have been using the drug for years and years.

I get the bee sting, and it hurts for a few minutes. The next day or so it might start itching. But seriously, it's not a big deal and it doesn't interfere with your life. It'll make you feel strong and brave.

Good luck!

[22cyclist]

I'M VERY ANXIOUS TO START ANY SHOTS...BUT HAVE DECIDED TO GO W/THE COPAXONE. MOST TIMES I ONLY SEE NEGATIVE ABOUT ANY OF THESE TREATMENTS.

I WOULD LOVE TO HEAR SOME POSITIVE FEEDBACK ABOUT COPAXONE, IT WOULD GREATLY HELP SOME ANXIETY HERE. (AND YES BEEN VISITING THE NEWBIE BOARD TOO) LOL

THANKS ALL FOR ANY HELP : )

I was on Copaxone for...well many years. It just stopped working for me, but I loved it. I had no symptoms on it from the medication, the shots were no big deal...a little stinging, but no big deal. No flu-like symptoms. No blood testing. I think you made a good choice. The only time I had the immediate reaction was when I forgot to let the medication warm up when taking it out of the refrigerator. I should know better...I'm a nurse. But even that wasn't so bad...it came and went, and I didn't do it again at least for a little while.

You will be fine. You chose a good one!

[alishape]

It's scary but it's not so bad. Like Mable said, you will feel strong and brave. People don't post online I have been taking copax for a year and so far, nothing, lol. It's easy to find extreme examples of reactions because that's the kind of thing people post about. I have had lumps, but no scarring, no permanent lumps, nothing that has ever made me think the benefits outweigh the risks. To be honest, I think it helped me with my brain fog, but then again maybe it went away on it's own. You never know with MS. One thing for sure taking our medicine eveyday is one of the few proactive things we can do. It feels good to do something.

[Cat Mom]

Hi Angel, I hope you have good results with Copax, I have had very positive results with it. I was on Rebif for 2 years and it didn't work. Switched to Copax 5 years ago and have had only 2 steroid-worthy flares, 1 in Jan/08 and 1 in Jan/09.

Of course there are everyday symptoms but overall, it has been pretty good. Instead of each day feeling like different levels of garbage, I actually have good days and OK days. Some days are bad but since Copax, it's not the norm.

Please keep us posted on how you're doing. Good luck and I hope it works well for you.
Jen

[jbell2435]

I started Copaxone a little over 7 months ago, and the first 3 months were good, a little sting for about 5-10 mins, then gone. Never had the heart racing, etc. 2nd 3 months the injection sites got welts (mostly arms and legs), and itched like crazy, but nothing I couldn't handle. Now the injection sites are back to where they were in the begininng.

Like someone else said, no blood tests for liver/kidneys, and I liked that there are no flu like symptoms, and that this drug is not supressing the immune system...

Good luck, it really is not that bad (to me anyway).

[Jules A]

Hey there!
If you search this section you will find some positive stories from people who have been on Copaxone long term.

I have been on it 7 1/2 years and have no intention of stopping unless my health dramatically changes or something comes through the pipeline that stands the test of time and shows improved outcomes.

Perhaps it is the medication, my natural progression or a combination but prior to starting it I had two flares in 6 months in the years since 0 flares although there has been some minimal progression. I am still able to work more than full time, I put myself through grad school and continue to exercise about 4 times a week. How's that?

[rainykatie]

i'm very thankful for copaxone. have been on it for almost 6 months now. the first 2-3 months were a little tough, i had pain at the time of injection and bruising. my sites are always itchy the next day. but now - the shots are a breeze and im proud i havent missed a single one!

[Angeldifferent]

Thank you all : )

Thank you all so much for your words of encouragement! I can't tell you how much it means to me; and feel I can "breathe" again. One day at a time in all of this no doubt...
I have my "treatment" appointment w/my decision on the 29th.

I will be happy to keep you all posted; and yeah...this should just make me more strong and brave Keep on movingggggggg right? (that's my motto in our home, keep keeping, keep moving !!!)

P.s.) sorry for the caps, so use to typing with caps to see clearer...lol

[Alicious]

I was on Copaxone for more than a year, and only switched because it wasn't controlling my MS as well as my neuro wanted it to. I've been on Rebif and Avonex since, and would take Copaxone hands down over the interferons both for the safety profile and the side effects.

Every body is different, and I hope you do great on Copaxone. You can do this.

[SEAMSGUY]

When I was first dx I chose Avonex. My dear wife shot me dutifully every Friday night and then I spent every Saturday and Sunday in bed, too "reactioned" (is that a word?) to do anything else. 14 months later I switched to Copaxone. I got my weekends back!!! I have virtually no reactions (on it 11 months now), not even the lumps and bumps people talk about. It's crap to have to shoot every day, but you get used to it. Best wishes!!

[Alpharetta]

keep rotating your sites

Been on Copaxone for 2 years, key is just be religious about rotating your sites, no side effects whatsoever for me.

[marybenes]

I will be on Copaxone 9 years this December 24. For me, it has worked really well and my MRIs have been good (of course, everyone is different).