Experiences with Copaxone

[Arron]

This is a call for our members who currently are, or previously have taken, Copaxone for the treatment of MS to please share your experiences with the therapy at a new project that has sprung out of our work at This is MS, aptly titled "the Experience Project"

Born out of our experiences (no pun intended) here at This is MS, where a wonderful community has formed based (originally) on shared and common experience, the Experience Project extends that reach of reassurance and wisdom provided by people who have "been there before" to all people and all experiences.

Specifically, while MS can certainly shape a person, it does not *define* them-- each of us are complex individuals with thousands of experiences that make us who we are, of course one of the most potent being our experiences with Multiple Sclerosis.

Each one of those experiences would be worthwhile to record for your own history, the therapeutic effect of writing, and the benefit it could provide to another who is just now facing something you have already been through (and survived). Your experiences will undoubtedly help countless others.

Participation is of course absolutely free. We have been working passionately on this project for a long time, and really believe in its potential to help others. Taking a few moments to share your experiences with the MS therapies you have tried will help us make that a reality.

Share Your Statin Experiences

Read Others' Copaxone Experiences

[Diane1949]

I recently found this website and am excited to see if I can learn more than I already know. I am 55 and have had MS since 1971. I have taken Avonex in the past but have now been on Copaxene since Jan 2003. I am very upset with the lipoatrophy of my skin but the medication hasn't caused any other problems. Any ideas?

[Loriyas]

Diane
Do you use the autoject? If so, have you made adjustments to the needle depth setting? When I contacted Teva regarding lipoatrophy they suggested adjusting the setting so it didn't go in as deep ( I think I'm at 6 right now) and that seemed to help. They said that can help with the lipoatrophy. Did you give Teva a call to see what they might suggest to you?
Lori

[Diane1949]

Lori,
Yes, I use the Autoject. I just noticed that my needle was set at 8. I will certainly set it at 6 and give that a try. I haven't called Teva at this point. I bet this will help and don't know why I didn't think of that before!
Thank you so much,
Diane

[curiouser]

I've just joined the forum, so I apologize for posting this late reply to earlier queries, but I thought my experiences over 2001-2003 might still be of interest. After 18 months of only pain, redness, and bumps at the injection sites, I had 3 or 4 of their warned-about"post-injection reactions" within the next couple of months. These were far worse than their literature described: immediate faintness, chest tightness, difficulty breathing, vomiting, diarrhea, and coldness so bad that my husband could hardly stop my body almost convulsing with strong shivers. Each time I phoned their nursing line and was told not to worry, that only a small percentage of people had one of these, fewer had two, and a miniscule number had 3, etc. These sessions left me feeling wiped out for a few days, and eventually a few weeks after the last one I came down with bad facial shingles. A few weeks after that I injected one night and without having that immediate sick reaction, I broke out in hives all over my body. This time the Copaxone people told me that I seemed to have developed an allergy to the drug and should immediately stop taking it. I've not had other allergies, so this was new. I now suspect the post-injection reactions caused a serious blood pressure drop akin to shock, and I think the medication also caused me to develop white-finger-reaction-to-cold syndrome, so I suspect there are more reactions possible than their literature yet identifies. I can't ever take it again, but obviously all medicine involves risk-benefit gauging, so I just offer my experience in case it's of use to others.

[Diane1949]

Curiouser,
I've had MS since 1971 and have been on Copaxene since 1-6-03. I feel so badly that you suffered so with all of those side effects. I have had none of those. My only complaint is the Lipoatrophy, or the odd dimpling, crater-like sunken areas that are hard. I shouldn't complain so much but I have found myself skipping the arm area just so that I can have at least one part of my body not so ruined. So that's my complaint, along with bad balance problems but I am still walking and am so thankful for that. I have talked with the nursing line too but I think I will just continue on this med until something better comes along. I sure hope the best for you. What do you take now?
Diane

[LisaBee]

Curiouser,

I only took Copaxone for a few days, but I had from the very first injection one of the systemic symptoms you described - a marked fall in blood pressure. I did not have the other systemic symptoms you experienced other than cold extremities. When I first injected the drug in the doctor's office, they would not let me leave for two hours until my blood pressure came back up. Because of this reaction, I tried night injections, since it took my BP so long to recover. I had bad injection site reactions too. I felt fine when I first started taking Copaxone, then progressively worse over the next five days with weird muscle spasms where I had injected the previous evening. Notably, in relation to your shingles, I had a herpetic outbreak a few days after starting the drug - something I had not experienced in nearly 10 years prior to taking the drug. I have not experienced an outbreak since.

I was told that the herpetic outbreak was unrelated to the drug since Copaxone is not considered an immunosuppressat but I am not so sure. It could be the repeated blood pressure plunge that caused some kind of systemic stress. Who knows. I only lasted for five days on Copaxone when I decided it would not work for me. I never had any follow-up with Shared Solutions.

Thanks for sharing your experience. I am "curious" as to how many other people have experienced either reactivation of herpes or chickenpox (shingles) while taking Copaxone. These events can also happen generally, so determining any association (or lack) would have to involve tracking and reporting across a large number of patients to see if it is more common in Copaxone-takers -

Lisa

[Fern]

I stopped injecting in both my legs and arms a few years ago due to lumps that didn't seem to go away, and painful injections. Now i do just my hips and belly area, as it seems least painful when you inject into fatty tissue. Teva also told me to be sure to inject at an angle, not perpendicular to your skin. This seems to help a lot as it prevents you from insserting needle too deeply.

[Diane1949]

Fern and others,
I feel better knowing that you are just using the hips and belly for injections also. I was thinking that I can hardly stand to touch my legs anymore because they're so painful and bruised. Maybe a break from that area. I never feel pain in my belly and so far... can stand the pain in my hips. Yes, the areas are hard too. I don't think I've tried injecting on an angle.....will try that......and wish I could turn up so more fatty tissue...it's like jabbing my bones. Thanks, Diane

[Fern]

Yes, do try to give your legs a break of even a week or two; maybe that will help. I always sort of feel a given area of my skin to see if it's hard before injecting. If it is, i search for another site that feels more pliable.

Good luck. Hugs.

[Diane1949]

Fern,
I think you've made my day. I will certainly try moving around the areas not affected first and try that angle. Giving my legs a break really makes me smile and know that I don't have so much pain to look forward to.
Diane

[Catherine_The_Great]

I was told to heat the area first and then use the cold compress and to NEVER massage the area afterwards because the caustic material they used can damage your skin more. I've given Copaxone almost 4 months and my vote is... off with your head!!!

Do I NEED to be causing myself a bad case of lipo with caustic chemicals and tumor sized bruises? I mean if I had a grid and an idea of how this stuff burns the fat that's one thing... but it sounds like a bad lipo job going on. Some of the vision problems I had kinda cleared up. It took almost three months to let the fake protein be absorbed by my body. I'm not thrilled about this drug and hench my recommendation to not want to continue with it. Every three day rebif sounds like it's easier to tolerate. Plus I think the dosabe amount should be changed because since I ran out of the drug due to a "pharmacy" error I injected myself with half the amount and found that my body tolerated the shot much better but you aren't supposed to half them by sticking your body twice. When I don't have this drug in my body or I accidentally skip a dose I have to take it in the morning and go through the nasuea induced stomach shaking effects. I didn't realize that the gasping for my breath thing at intermitten times was a symptom. I've been having that one a while.

I refuse to put it in my legs every again. It burns so bad it make me cry. Same with my arms until I heated them up with a heating pad but still I won't use it on my arms because it just hurts way too much. I'm not a small woman... it shouldn't be hurting like this.

This stuff does really weird things to your system and I think if you are older it's a lot harder to put yourself through this shit. Once I waited for the "adjustment period" after being wiped out with "flu like symptoms" that left me sick for six weeks not only from the regular colds you get from your kids but because your system is weak so the fake enzymes can do their work.

You know how they say you can't trust anything on the net? I feel like some of the things I read here were posted by people working for these companies rather than people who actually suffer from it. If you listen to their BS and quesitons after a few months and talk with a few reps on the phone you start to recognize the same verbage and cautious nature. Plus these kinds of people maybe post one-4 times and you neve see them again. Just my 2 cents...

[Diane1949]

I think that 'caustic' is a good word for that Copaxone stuff. It does terrible things to many folk's skin. However, I am still using it probably because I can still walk...badly, but can still walk and maybe this is what's helping. I just don't know. I don't get sick to my stomach or have any burning. I'm just using my hips and belly now however. I want to save my poor wimpy legs and arms. They are still painful to the touch even after so many months. I've never had flu like symptoms or breathing problems. I missed a dose once and just did it regularly the next day. I always use an ice pack before injection.. I tried heat but the ife works better for me. I don't do anything afterwards but try to forget what just happened:) I read about not massaging but sure wish I could. I still have attacks, even with Copaxone, but I am still walking. I'm sorry that you had such terrible side effects. Are you on another MS therapy now?

[Fern]

Catherine, i am sorry you are having such a bad time of it with the Copaxone injections, but i took offense at your suggesstion that I (or others?) are not who I say i am. I am exactly who i have said I am, and I'm not masquerading as anything else here. Your paranoia here is not exactly helpful to others who are looking for help or support.

It sounds like you were ready to switch back to Rebif, but if you haven't, maybe it'd be worth your while to see your neurologist or call Teva Marion with your issues. They might have something to offer. My own experience with the neurologist was not all that great; i had one try with the doctor there, and she placed her hand on top of mine to make sure i'd get the needle in my leg, but she jammed down so hard that i had a black and blue on my leg.

I don't think age has anything to do with it; learning how to inject myself was one of the hardest things i've ever done, or at least that's how i felt at when i started doing it 7 years ago. Now, it's something i'd much rather not be doing, but it's not the biggie it used to be.

I am pretty much a logica, analytical person. I'm using Copaxone becus of the hard evidence, in the results of their trials, behind it. It's pretty persuasive. I haven't lately checked the efficacy of other drugs out there, but i chose C. becus it seemed to have the most tolerable side effects. And my health is worth too much to play russian roulette with.

[Catherine_The_Great]

but i took offense at your suggesstion that I (or others?) are not who I say i am.

I was not talking to you specifically but I was not talking about you at all. I've never read your posts and I don't know who you are. Maybe I posted in a topic you were writing about but Jesus... I don't know you and I am sure you have posted several times but I know I've been chased by Liberty Mutual for things I've said because they think my MS was diagnosed before I started working for a company and they look for evidendce of how much internet time I've logged over the years and has used this against me. I'm sorry you took offence but you are also as paranoid as I am and maybe that's a good thing or a bad thing but it is what it is and I am willing to bet you might not be one of the nurses with canned answers but someone is. I know if I were Teva I would put someone on these boards to moniter what people say and pull this information out for their own research. I would if I were one of those companies and I am curious to find out why you felt this way when I was not talking about you at all. It just goes to show you no one can be comfortable no matter where they go because they can't always get out of their box and I do not mean you Fern.

I'm sorry if I sound so defensive but this was one of my first posts and that makes me uncomfortable to post here because I have problems thinking because of the MS mixed with a brain tumor and the last thing I need is for more people to be angry with me for speaking my brain damaged mind because I am willing to bet someone not just on this specific topic isn't who they say they are. Plus why can't I speak my mind? IS this forum just for people who are oh so politically correct because I am anyting but that and why can't I ask for support in the best way I can? I am so sick of people who are brain healthy acting like brain damaged have to abide by the same rules as you do because so many people give so many other conditions "credit" and I've been having problems since I was 17 and I bet the MS hasn't helped. I've been thhrough hell trying to get diagnosed with the problems I always said I had and I haven't taken Rebif ever. You misread what I wrote. Always some kind of misunderstanding