This Is MS Multiple Sclerosis Community: Knowledge & Support

I was told to heat the area first and then use the cold compress. 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.

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.

Hiya Catherine (the Great! )
I know how you feel, I am a bit lipo all over legs and tum.
But I have to say to you, I was on Rebif for 3 years and it was HELL. I normally don't word things that strongly but I really mean that. What I went through though, I was told was "extremely rare".

After 1 year on Rebif I ended up with a very low white blood count (neuros said "oooh we've never seen this side effect before") as well as getting 1 flulike infection every 4 weeks for a year and a half. I was out of work all the time, sick, getting over being sick, getting sick again. It was awful and I did also get some lipoatrophy with Rebif too. And Rebif did absolutely nothingn to stop relapses either. In fact my MS was worse than it is now and I'd been told it was worsening RR, and I needed to go on Mitoxantrone. Within a month of stopping Rebif the infections stopped, and my blood count normalised. My mild spasticity in my legs actually disappeared after I stopped Rebif so it seems like it was actually a side effect of it, for me.

But I went on Copax and yes, thighs are not looking their finest but my MS has improved a huge amount, my EDSS score has decreased much to the surprise of the neuros, and I suppose I can live with lipo legs if that happens.
Maybe you WONT have any problem on Rebif but I would say think about it carefully, especially if you are finding Copax is working for your vision.
Maybe in a few year their will be tablet versions and our legs will return to their former glory!
Best wishes
WW

Catherine, Just wanted to let you know about my experience so far with copaxone. I have been on it for just about a year and have not had any real problems. Every once in a while I will get a black and blue spot where I have injected but that's about it. One thing I would recommend is letting the copaxone come up to room temp before injecting. What I do is take the next dose out of the refrig the night before for the next day so it sits out 24 hours. Also, to give you a little more info to think about my sister had been taking copaxone almost eight years now and it doing very well. Dave

I've been on C for a couple years and think, while not perfect, it's better than the alternative immune-suppressing drugs. Also keep in mind that it takes at least 6 months before copaxone has any measurable effect. I agree with the other poster who stated that it's important to let the syringe warm up to room temp. A cold injection is painful for me. I also use 10 injection sites in order to minimize the lipo.

Copaxone is not a perfect match for everybody that's for sure. I've been on it now for over 6 years. 3 years of everyday shots, 3+ years of every other day shots. So far so good.

My yearly MRI's have been stable, I've gone from almost being unable to leave the house for a couple years to back working full time. BTW, I'm a carpenter/builder and what I do is extremely physical.

Who knows if it's the Copax that's responsible but, I'm not willing to take the risk that it's not helping in some way.

PTWO, thanks for posting. It's little stories like yours that keep me injecting daily.

Copaxone wasnt for me.. I was dx in Dec 2004 after intial attack which completely caused my entire left side of my body to go numb, I thought I had a stroke in my sleep but an MRI revealed 2 lesions on my brain and a a spinal tap for confirmation. I was put on Copaxone in Jan 2005.. was on it for 3 months until I found out was pregnant with twins (maybe caused by copaxone??) but I would have heart palpations every night after the shot, and would feel completely crappy the next day.. and I couldnt tolerate the bruising and muscle aches after the shots.. I tried leaving the shot out to be at room temp, but still didnt help much for me.. I would ice the area for about 5 mins before hand, and used the autoinject as well. A year later after the birth of the twins, I started back on.. and had the same side-effects, and noticed increase amount of depressed thoughts and just being withdrawn from family and friends... so completely stopped MS treatment.. now im thinking about Avonex..

Keep in mind what another poster said...its takes between 6-9 months for Copaxone to fully take effect. My husband was diagnosed in February of this year and has been on Copaxone ever since. He initially had tingling and numbness in his legs and the week after dx he developed optic nueritis. He's doing better now thankfully! In any event, at the 6 month mark he actually started to feel the best he's felt in a while. He also had his follow-up MRI and it showed no progression from the original scans. While the daily injections suck he'll stick with it until something better comes along!

Another tip...he takes a weeks worth of injections out at a time. That way they are always at room temp when he injects. Once in a while I'll hear him yell from the bathroom when he's just injected, but most of the time its reletively pain free (aside from the normal burning that lasts a few minutes).

I am newly diagnosed. Supposed to begin Copax soon. Trying to sift through all the BS to find the truth. I need to know if this stuff works or is it a waste of time? I am a naturalist and find it difficult to put these chemicals in my body everyday for the rest of my life. I need someone to tell me that it has truly helped them. I would like to find help as my vision is distorted, but don't trust docs or pharma companies much. Please help.

Copaxone is not comprised of chemicals...it is 4 amino acids- glutamic acid, lysine, alanine and tyrosine- which are found in myelin based proteins. It acts as a decoy for the immune system, and turns inflammatory T-cells into helper t-cells. It takes about 4-6 months to turn the t-cells around, but in those who respond to this treatment...it can really make a difference. It is different than interferons, in that it doesn't shut down the immune system, but retrains it.

My husband has been a Copaxone responder, and has not had a relapse or progression in 19 months since diagnosis...but he is also on the Swank diet and over 30 nutritional supplements.

Keep researching, Riki. This site is a good place to learn. Wishing you the best in your journey-
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Works fine for me too. Read the notes, there are some interesting side-effects, but most people don't get them, else we wouldn't go on taking it, would we? To start with it felt like a bee-sting, but after a few weeks that goes away.

But you have to be patient, it really does take a few months to kick in, but nowadays I hardly remember I have MS.

It doesn't work for everybody, you have to try for yourself.

_________________
Bibo ergo sum

I realize that MS is very personal to each person, but I was wondering if anyone has ever experienced a visual shaking in one eye that can not be witnessed by anyone else. This visual disturbance is causing me a great deal af grief but none of the so called professionals can tell me the direct cause. Could be this, could be that and of course, could be the MS. I have so many symptoms but this one is the most debilitating as reading is a problem. Please help, if you can.

Thank you

Hi Riki...
Sorry for your tough times with your eyes. You are describing "nystagmus" Maybe post this as a heading under the general discussion forums to get some help from people who have had this issue. I know that a magnesium deficiency can make this problem worse, and it is a part of MS- you may want to look into supplements-
http://www.ctds.info/nystagmus.html

hope you get some help-
AC

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Hi Catherine,

I was recently diagnosed with RRMS in February of this year (2008) and was highly encouraged by my neuro to begin with Copaxone as my initial therapy.

I'm brand new to this forum, so figured I would air my story in this thread instead of creating a separate one. I don't see a need to make it "all about me" but wanted to give a little background on my case and my current experience with Copaxone just in case it helps someone that might be reading.

I'm 38 years old. My symptoms first began presenting about 2-3 years ago as acute onset fatigue while doing physical things like yard work or cleaning out the garage. Started off as occasional poor balance and reduced leg coordination. My legs would get spastic causing a reduced ability to lift my legs while walking resulting in dragging feet and stumbling gait problems. About 2 years ago, I had all but lost my ability to run or jog without falling. The biggest symptom for me occurs when I've been on my feet for more than 10 - 20 minutes. Acute fatigue sets in and it is as if someone has turned up the dial on gravity and I feel I'm in a 3g environment. I feel like I have 250lbs on my back and my legs have 100lbs concrete loafers on them. It has gotten worse for me over the last 18 months.

I echo what others have said. By my understanding, you need to be on Copaxone Therapy for 6 months to a year before your body even realizes what its supposed to do with it. I'm on my 8th month and I haven't missed a dose. I can't say I'm feeling better because I think there is a pro-rated period between the time you begin injections and the time Copaxone begins to start modifying the immune system. During this time your immune system is still ravaging your myelin in your brain and spine. I actually feel a little worse than I did before I started but I am going to stick with it.

My last MRI (Head and Cervical) was done in November last year. Results showed a symmetrical trouble spot identically located in each hemisphere of my cerebrum. I'm a pretty structured and orderly person by nature and my brother teases me that I'm so anal that I even have to have my MS scars arranged in an orderly fashion. The follow-up MRI I just had done last month shows no new activity or worsening of the trouble spots.

So...how am I dealing with Copaxone? It was a very emotional decision for me to start the therapy. For one, it was an acknowlegement that Yes, I do indeed have MS and now I have to do something about it. That was so hard, finally admitting to myself that I have this life altering disorder. But once I was able to do it, the rest followed suit. The fact that I HATED needles and getting shots made it a very difficult choice too. The idea of having to give myself injections made me sick to my stomach, but I have a good friend that has Type I diabetes and she told me something to the effect of, "I have to pop myself 5 - 8 times a day with insulin when I can't wear my pump and you'll only have to inject once a day?!? Jeez! Quit being such a pussy!"

I began my injections in late February. I pull out a pack of 5 syringes at a time and just leave them in my Autoject bag so they are always room temp. My tummy and hips are not very difficult to do at all and don't give me too much more discomfort over and above the whole "OMG! I just popped myself with a needle and injected fluid into myself!" feeling I always get. Arms were a little bit more difficult till the Shared Solutions nurse showed me a really good technique for shooting them from underneath. They aren't much problem anymore.

My thighs are another story altogether. I'm 5'9" and very trim and lean at 152lbs. There is no fat whatsoever on my thighs so I have to use the 4mm setting on my Autoject to keep from going intermuscular but even then I still hit muscle most of the times. Hurts pretty good sometimes and occaisionally I'll nick a capillary or something and have a nice little bruise to remind me. At all my sites, though, the med burns for about 2 minutes and the site is swollen and tender for a couple hours. I've gotten used to it to the point that I just don't pay it any mind anymore. It sucks, but I do it anyway. I was in the Army for 6 years and have had to endure far more physically demanding and stressful things before. I get a hard knots sometimes on my tummy or hips where I've injected, but they usually don't last for more than a week.

Overall, its just become part of my life now. I've had to change some things as a result. I exercise regularly again 2 - 4 time a week. I find pedaling on a recumbent bike is the best since my balance keeps me from walking on the treadmill or in the neighborhood. I take a shit load of supplements now (1500mg calcium, 3000 i.u.'s of Vitamin D3, Omega-3's, Magneseium, Potassium, and a One-a-Day for men just for good measure). I try to eat right and get plenty of rest. If I get tired, I take a break. Push it when I feel up for it and back off when I don't.

Hopefully Copaxone will help keep this thing at bay until something comes along that's proven to reverse myelin damage.

Till then I'm going to keep living. Luckily I have a pretty good support system in place in the form of family and friends. I'm very fortunate in that regard. So.....I'm going to manage my MS and not let it manage me.

My hopes, prayers, and mojo go out to everyone posting on this site as I'm sure you have all been touch by the effects of this disorder in one way or another.

- KC

2004, Copied from Lancet Neurology of Canada

'In this week's issue of the Lancet Neurology, glatiramer acetate, known as Copaxone(R), was subjected to an independent review. The systematic review, called a Cochrane Review, performed by Dr. Luca Munari and colleagues, challenges the claims of benefit from previous industry- based publications.

A convincing benefit on disability and an effect on the proportion of patients free from acute flare-ups of the disease during treatment could not be demonstrated, "Glatiramer acetate is now routinely prescribed for MS and it is the fastest-growing product in its market. However our systematic review of all randomized controlled trials of glatiramer acetate found little support for use of the drug in patients with MS," notes Dr. Luca Munari of Italy's Azienda Ospedaliera Niguarda Ca' Granda.

These efficacy-challenging observations might come as a surprise for many Copaxone users. Most Canadian MS patients and prescribers are unaware of these early concerns about Copaxone's efficacy even though the FDA, the U.S. government agency which reviewed the product license application in 1996, was concerned about "data dredging" in the sponsor's own data analysis. The agency conceded then that the treatment had a very slim treatment effect, but approved the drug.

Cochrane Reviews are now being applied to the new drugs being used to treat multiple sclerosis. Given that Canadian neurologists prescribed $150 million worth of these new treatments last year, it is imperative that those without a financial stake scrutinize treatment claims.

"Canadian health care dollars are precious. We must continue to scrutinize treatment claims from the pharmaceutical industry and continue to design clinical studies, which improve upon from the missteps of previous studies," says Dr. George Rice, Neurologist and Director of the MS Clinic at London Health Sciences Hospital in London, Ontario. The Cochrane Collaboration attempts to distill a true sense of worth from all published and unpublished clinical trials of a given agent or intervention, despite industry claims. The approach is simply to obtain all published observations, to adjudicate trial methodology and quality and to perform statistical analyses of aggregate outcomes. The Cochrane organization is not-for-profit and is designed to provide realistic expectations of what drugs might do, for patients, prescribers and payers. Application of rigid methodology in Cochrane views generally leads to more sobering interpretation of treatment claims.

Beta-Interferons are widely used in the treatment of early, relapsing forms of multiple sclerosis. The Cochrane Collaboration scrutinized these clinical trials in a publication in Lancet last year. A consistent benefit on attacks and disability progression was identified for two years for which data were available. Concerns were raised about the relatively short duration of clinical experimentation justifying use of this kind of treatment in a disease, which is 40 or 50 years for most patients. Concerns were also raised about methodological problems across most of the studies reviewed, particularly the application of rigid intention to treat analyses.'


I wish more of us were healthy enough to really find INDEPENDENT studies of these drugs. If you dig deep you will see that most all of the literature, research and support for these drugs come from the DRUG COMPANIES. Research the specific doctors writing these reports and see how most along the way work for the pharmaceuticals now or in the past.

I am so disheartened by the sneaky tactics of these companies. Even the MS society gets big money from the drug companies. Sadly like many things in life to find the truth you have to follow the $$$$$$$$$. These drugs are "something" for MS but no better than a placebo and in my case very harmful.