negative things about copaxone

[billiejeane]

The most negative posts on this board about meds pertain to copaxone. And I agree. I felt million x's better b4 I started that stuff. Started 2 years ago and now,on some days,I feel like I have some crazy virus. And,I do not believe fr 1 minute,that it is d/t disease progression. So,I went off it,the 4th day off,I woke up and was so dizzy,whirling,vertigo,etc....I did an experiment and took the shot,the dizziness went away.The dizziness did not go away cuz the copaxone "is working" It went away because what ever this stuff is that I inject into me,was withdrawling out. So,now,My" body " is addicted to it no differently than the body becomes addicted to opiates. I want to hear someone please convince me why I should take this for ms. Now I am taking it to avoid "withdrawel." People say.......it's the disease,it's the disease. I say BS. And I will not go on any other drug for "ms" I will take sx management drugs,which have increased since the copaxone,of course. So,if i could have a week to not have to work and lie in bed while withdrawing off copaxone,I am gonna do it. I am over it. Anyone?

[Thinkimjob]

I've been off it for about three weeks. I do actually feel better, not half so edgy and 'mad'. Can walk better. Whether that was Copaxone or not, who knows.
Beta, which I took for five fun-filled 'flu-like' years, was worse.
It's very hard to keep taking drugs which are supposed to work, and probably do, but not so's you really notice.
I'm sick of disease 'modifying' drugs - I want something that actually stops this disease in its tracks.
Dreaming, I know.

[inmoni5]

I have to comment on this thread.

I hated Copaxone. Every shot wore me down.
One night after I did my shot, I went outside, sat on the porch and I was done. Done with life. I cried, had a pity party for myself and gave up on myself.

That was the day that I decided I was never going to give myself another shot ever again. Alot of people ridiculed me for it. Told me that I would regret it. Told me that it was my "responsibility" to my health to take a shot that was tearing me apart inside.

Some people choose to do the shots...I will not. I have looked into the Stem Cell Transplant in Chicago...even was approved for it. That has the best results for ms as of today. I declined because I don't have the support system here at home to be able to recover from such an invasive procedure.

Now I am on LDN. I do have tiny improvements. Mood, energy, pain, mobility improvements. Very small but noticeable to me. LDN also has the same benefits as the dmds by reducing flares and slowing progression...with no lasting side effects.

For now, this is what I'm capable of. I never had a good feeling about the shots. LDN, I have a good feeling about and am very happy w/my decision.

[candycane]

I'm with y'all

I'm also sick of hearing "it's the disease." I think alot of my problems are side effects of the copaxone--almost like I was mislead to begin with. At least the betaseron drugs warn you of the flu-like symptoms. I have a close friend who has done great on copaxone & I'm happy for her, but my experience is different. I'm not feeling well & I wish I was warned about the depression, edginess, viral feeling, etc. I know the benefits are supposed to outweigh the negatives....just feeling a little down & frustrated right now.

[Cat Mom]

I seem to be the minority here. I was taking Rebif from Dec/05 until Aug/07... during that time I had over 6 attacks that required IV steroids, had to stop working in Feb/07, walked with 2 canes.

Started Copaxone in Aug/07 and have only needed 2 IV treatments to date (Jan/08 and Jan/09). Now I walk on my own (far), swim and I am set to return to work part-time.

Since stress greatly affects MS, I thought I'd also say that since starting Copaxone life has been quite stressful... my 3step-sons decided to move in with us full-time (involving nasty court stuff with their mother), I found my estranged sister at a homeless shelter, my father-in-law was diagnosed with lymphoma and to end 2010 on a super stressful note, my own dear Mum passed away on Dec. 19.

I do believe that since stress is a large factor in the course of one's MS, for me... if it weren't for Copaxone, I don't know what shape I'd be in. That's just my story, hope you find the answers you're looking for.

[Thinkimjob]

It can't be possible to take any drug every day without side effects.
I know they say Copaxone has hardly any bad effects, apart from troubles with injection sites, but it definitely made me feel mentally and physically erky.
I know it only claims to reduce the number of flares by 30%, but even that varies from person to person.
The only flares I've had that needed IV steroids, I've had since starting Copaxone. Three and counting.
It hasn't stopped me progressing. (I know, they never claimed it would.) They still don't know why they "work".
I'm basically over DMDs, but Lord help me, I'll probably start again.

[chalknpens]

I agree

I've been on copaxone since diagnosis at age 57. I agreed to take the injections because I thought they would help me finish my last six years of teaching.

Copaxone and I failed in that... I only made four years. Would I have made six without copaxone? I think I would have. I regret ever having had tests that led to this diagnosis. I was doing fine "just treating symptoms instead of finding the cause and being cured." There is no cure.

I'm more depressed now because I am no longer employed, because my pension is less than it would have been if I had finished two more years. I feel like I failed. In truth, copaxone failed. I kept my end of the "mental bargain" that I made with myself, injecting every night for over four years.

I'm still injecting, but will discontinue when I meet with my neurologist in December.

[sengelhardt]

I spoke with my neuro in length yesterday about the different meds.. after doing as much research as I could on my own ofcourse, even brought in literature on LDN.

I personally didn't notice anything 'wrong' with me on Copaxone until I stopped taking it. I had missed a few shots right after my last MRI, then she called wanting me to come in for my post MRI talk about changing meds.. so I stopped the Copaxone since I had already missed two days, and figured we would be changing anyway....whats the point right?

So in our talks yesterday I brought up why she thought at my 6 month MRI we needed to change meds, since it is normal for the MRI to still show lesions, espeically in early dx. And her comment was that each persons MS is going to be different, and some meds will work better than others for each person. She said that mine is possible more inflamatory than others (based on the lesion size etc on the MRI) and that copaxone may not be doing all it should do for me.. so then end result was me switching to Rebif...

however back to the original point.. I DO feel a LOT better now that I have not been doing my shots. I can't say I went through a withdrawal... but I did feel a little icky at first when I stopped. Its been two weeks now, and I feel like pre dx in March. So I know what you mean about Copaxone making you feel weird. I can't pin point how I felt, but it wasn't good. I had anxiety issues that I was evaluated by a cardiologist for, felt edgy... just not 'me'.


And as far as LDN, my neuro dismissed it totally.. so we will try Rebif for a while, I will give it a year and see how it works.

[jmwilliams]

in the minority - help with med change

I believe I am in the minority. I have been on Copaxone for 10 years with great success - 0 attacks and 0 side effects, other than injection site issues. Unfortunately, I am having to change meds because I have totally destroyed all my fatty tissue and no longer have any injection sites left. I was hoping to get some advice from someone who may be in a similar situation or may have changed from Copaxone to another med with success. Right now my neurologist has said my best options are Avonex, Tysabri or Gilenya.

[jazzgirl]

I have to comment on this thread.

I hated Copaxone

.

Me, too, every single 11 mos., 2 days of it!!! I had the best luck and easiest time with Avonex, and I was on EVERYTHING and then some.