Anyone try Copaxone?
 

My neuro wants me to try it because the Rebif was making me really ill, and I kept walking into walls and doorways...can you please tell me about your experiences with it, and if I should shy away from it or not? Thanks! And, it's good to be back...have been having my own issues with foot problems and surgery on it...am doing better again...ever since I stopped the Rebif and it got out of my system...I'm kind of gun shy at this point, but willing to try it if it will help keep me from walking into walls and tripping and dropping everything...I sound like an ad for MS right now...LOL...

My experience with Copaxone has been a good one. I've been on it over 5 years now. In the six months before it I had 2 flares in the 5 years since none. Although there are subtle signs of MS progression my MRIs remain stable and I have been able to continue working two jobs which is very important to me.

I have been lucky in that the only down side is localized site reactions, some painful but not a problem in the big picture. I do have some dents in my thighs but as 45 even though I'm still in decent shape no one deserves to be subjected to my upper thighs anyway. ;)

Now plenty of people that are anti-medications will say that I have no way of knowing for sure if this is working or not and thats cool. I'm going to stick with it until my MRI/symptoms drastically change or something considerably better comes along. Good luck with whatever you decide.

Hi Jewels. :)

Copaxone was a breeze for me, no cite reactions and no heart attack-like, side effects. I stopped it, after10 mos, because it didn't seem to be helping me, but different strokes for different folks.

Good luck with it..:hug:

I took it for five years and will be going back. I really did a lot better on it than off...and we are hoping my sx will calm down once I start back. I didn't have any side effects, I took it in the morning. I was probably too busy to notice.lol

Or you could wait to try the new oral DMD that will be out in September. Give your body a rest till then.

I think Natalie said that in her thread on here:
http://neurotalk.psychcentral.com/thread124723.html

I tried C for almost 2yrs. I had a ton of side effects.. No clue if it was working for me tho. I think I've had more exacerbations since quitting it, but I was having exacerbations a lot during the time I took it.

The side effects just were a bit too bothersome for me, and the fact that my neuro ruined any of the (little) faith that I had in the drug that I just quit right about this time last year.

I still have four boxes in my refrigerator. I wonder how long it's good? (I was always four boxes behind because of a lazy injection training nurse who didnt show for three months)

I've had great luck with C. Rebif was really bad for me too and I switched to Copaxone after only five months on Rebif.

I'm doing very well now and have always when taking C. It has a nearly 20 year track record for safety now which is a plus too.

I asked my neuro about the oral meds and he said that since C is so safe and works for me I should just stick with that and I agreed. Good luck and let us know what you decide to do.

I have not enjoyed C like everyone else. While on it, I am more fatigued, and have headaches, and tummy troubles. I get lumps, and dents from it too. I am told that it made a difference in my MRIs and that I am being kept stable on it, but I am struggling with it.

In the early days, it has a bee sting bite to it, but that goes away with time. it can also leave an itchy lump, but that too goes away with time. Also some folks need 6 months to a year before they know if C is working for them.

75% of the folks who take it, have no real issues from it, and most really like it, cause it doesnt make you feel like you have the flu.

I hope you are able to find something that works for you. I couldnt take Beta as it made my liver go crazy. C is a last resort for me, so I hesitate if I am going to stop or stay.

I just had my second try with it a couple of months ago. The first time I was on it I had really bad site reactions so I had to stop.

I tried it again in January and after a week of injections I went into anaphylactic shock and had to be rushed to the er. The doctor told me not to EVER take it again.

This is a rare reaction from what I've read but I did find it in the tiny print on the package insert. I wouldn't discourage anyone from trying it. It seems to be the most innocuous of the DMD's.

Good luck :hug:!

i've been on C for 7 yrs without incident.
my mri's have been stable.

i couldn't take the interferons and C isn't an interferon.

good luck. it's worth a try. it may take up to 8 mos to get your blood levels up on this med. just remembered that about it.

At first I was not going to respond because reading the scary stories about copaxone almost stopped me from trying it. But I am glad that I have tried beteaseron, copaxone, and tysabri even if I could not tolerate them. I just feel like you have to try. I most likely will try the new oral med once it is approved although my neuro is not so sure I should. he changes his mind from appointment to appointment.:rolleyes:

That being said, in the 4 1/2 months that I was on copaxone I also experienced bad site reactions. But the reason I stopped it was that I also had 6 IPIRs in that time period. Following each IPIR, my temperature would spike and I would spend several hours shaking which was not a "normal" side effect. Like Joelle, I tried to go back on it a year later and on the very first day, my temperature shot up 103 a few hours after the injection.

However, a lot of people have been on it for years with very few problems.

Stopped my progression dead in its tracks for almost 3 years. I got strength back where I didnt have nerve damage. Stopped being effective. Wanted estriol + copaxone but idiot neuro said no to estriol and put me on Tysabri! No longer my neuro. Go for it.

I agree with Barb. You dont know how YOU are going to react until YOU try it. Same for any DMD. Some folks take Avonex and dont blink, others lay in bed for 4 days with fever, shakes, chills, and bone pain. Same for Copaxone. Some folks never notice any change other than feeling better, and others have dented skin, and those dreaded reactions after taking the shot.

Its worth a shot (pun intended) and perhaps you will be so pleased, and happy with the drug that you cant believe you waited. If you are not happy, and full of side effects, your MD will pull you off. NONE of the DMDs are forced on us if we are miserable taking them.

I wish you the best of luck. The majority of folks who take it say its almost side effect free for them. :cool:

Site reactions are the most common side effects to C, but they often go down with time.

I miss C, and I was on it for two years. It was really good to my MS, but I had some rare issues with the immediate post injection reaction that caused them to yank me off of it. So I guess you could say I had a love/hate relationship with it, LOL! But I'm a med sensitive person, so I get a ton of wacky reactions to things.

We all react to the meds differently, so being nervous about switching to a new drug is understandable. :hug: But as Dej said, it's often worth a shot. Best of luck!

I've been on Copax for 9+ years and have been stable. Actually I've improved. After being on SS disability for 5 years, for the last 4 years I've been back working full time as a carpenter.

Ptwo that's great congrats!

:wink:

I was prescribed Copaxone for 2 years, when all of the sudden I had two severe allergic reactions, to it, requiring visits to the E.R.

My allergic reaction consisted of hives all over my body that itched so bad that I could hardly sit still. I also had shortness of breath that became worse on the second episode. The two separate episodes came at about 2 months apart and the Doctors (including my Neuro) had no idea why these happened, so I stopped taking it.

The shots also have caused my upper arms to sink in, which makes it look like I have lost muscle tone in both arms. Not pretty. My upper legs are somewhat that way, too, which is very upsetting.

Other than that, I felt that Copaxone was doing a good job at keeping my R/R in check.

I'm now considered Secondary Progressive since I was diagnosed in 1997.

I hope this helps and I don't want to scare anyone into not taking Copaxone, although I would like you to be aware of the risks.

Hi Kars10,
Welcome to NT. We appreciate your input. That was very nice of you to post your side effects and reactions to Copaxone, and yet not be against it. We are truly all different. The way our bodies handle medication or injectables, even aspirin.

No two people are the same. Each on of us has different symptoms and reactions to lots of drugs besides MS ones. Some have more than one disease.

We hope you continues to post on this forum, we love to hear new people. We learn from each other.
Nice to meet you. :)

Jewels, I don't want to scare you off Copaxone either, and so please remember that I'm not really an ideal candidate for Copaxone because I have SPMS and because I'm so old and have had MS for so long (30+ years). They just don't know much about what Copaxone does to people like me, and there's been no evidence that it helps someone with SPMS.

But, like others, I wanted at least to give it a try. I took it without missing a shot for nearly 3 years.

Some of the side-effects began to get bad. "Bowel urgency" was the one that ended Copaxone for me. Spending a large part of nearly every day in the bathroom isn't my idea of "quality of life," though I might have put up with it if I believed Copaxone was helping me.

Now after a month without Copaxone I'm gradually feeling better--and my arms are starting to look like arms again.

The usual site reactions do subside for most people after a few months. They did for me, except for the arms to some extent.

And I never had even a hint of an IPIR.:)

I don't know if I mentioned, but I've taken it for over two years total time now and never had the reaction. They warned me that it was possible but it just never happened. Most people are not going to report that they never had the reaction because if it works fine for you, you don't even think about it.

I'm shooting it... seems fine even though it irritates a little after injection... stings a bit, but I'm used to it. I thought I was having a reaction from it like heart palpatations, but they were actually stress induced. The hardest thing was starting with it....I mean WTH?... what is this stuff going to do to me?... So far I have no more sudden fainting and dizzy spells...I'm riding my bike again so seems it's doing well for me.

I had nightmares and wet the bed while on C. Of course, it's hard to lay blame to the medication alone for those incidents. It could be coincidence.

I can confirm that C caused my arms to spasm very badly after injection. I had to take an 'arms vacation' and miss 1 shot a week, double injecting my stomach.

I wasn't on C very long to form a solid yes or no about the drug, and I never was on another DMD. I just quit and decided for me, controlling my destiny with my diet and lifestyle choices would be best.