Taking Copaxone?

[funwithjess]

Hi I'm new to this community. I was diagnosed  in 2006 with MS. After a year in denial . My electric shocks to my face had increased to the point  I needed medication (Tegretol) . And my Neuro. advise me to to begin Copaxone. I have been on Copaxone now for a year. But I have only been taking it every other day.I went on to fight inflammation in my system. Which included changing my diet. My diet consists of no meat. Also I have been eating 5 oz.'s  of Salmon every day. I am now thinking maybe I should take the Copaxone everyday because my left leg still is weak and tends to not want to walk along with me, on top of the stiffness. And this shocking in my face can be terrifying. But I am still not sure if it would change my situation. I wish I had a magic ball to see if I am making the right decisions. My question:  Has taking Copaxone improved anyone's situation?.

[sweetie1414]

I have been on Copaxone for almost 3 months.Before I started them I did a round with solumedrol (urgh). I can honestly say that anything is better then nothing .This drug may not help all of us but I feel it is better to put up a fight then to just lay down and give in to the monster(MS). Have you had an MRI to evaluate new lesions on your brain ? I have been told this is the true measure of whether a therapy is working for you.

[doublevision1]

Another consideration re: diet & MS.  It's possible that sensitivity to some foods may be associated with the multitude of medications that MS pts take to manage the symptoms of the disease, and not the disease itself or DMD's.

[Lulu54]

Hi Tick,
Everyone is doing a good job on this copax conversation - I would be sure you have discussed this with your neuro because the drug is intended to be given daily.  

Your comments about food caught my attention though. You are the first ms'er I have heard complain about foods not being tolerable.  

Being cold and staying cold is not unusual but having hot flashes doesn't usually show up here either.  I would highly recommend that you go to your internist or GP and discuss these problems.  Even though we have MS, we can't blame everything on this MiSerable disease.  


I hope you can find some answers.

be well,
lulu

[hackwriter]

I took Copaxone for five years, injecting every day, and recently switched to Rebif after a very long flare-up and lingering damage. It took a 20-day taper burst of prednisone to knock me into a plateau. Copaxone seemed not to be doing what it was supposed to do. For me, Rebif is very painful to inject, and is causing insomnia, chills, and back and joint pain. But I'll give it time.

After injecting for so many years, Copaxone caused a condition called lipoatrophy, so I cannot inject my arms or the tops of my thighs anymore. This condition causes deep craters and hard knots where the medicine has destroyed the fat cells. This was the only side effect it caused for me, but that's a big one. I was never given the option of injecting every other day. Daily injecting is the recommended treatment as far as I know.

[cainer]

i caught you talking about diet wanted to share that i guess alot if msers have trouble with tollerating certain foods- i just wished they would tell us up front.. i cant eat some foods that i love -makes me sick- now.  and hot flashes cold staying cold wasnt menapause either. type that in about ms and diet or why we cant eat this or that -youl be surprised- not trying to bust your bubble but i just wished id known!! would of saved lots of times of me being sick!!!    if u  can eat it now thats great!!!! -some of us cant-    be well  tick

[Nancy_LA_MA]

Thanks, sho.  
I don't know a lot about all this and have been collecting all the info. on Copaxone that I can since it has been mentioned to me as a possibility.  Actually, I'm collecting all the info. I can, period...  

[shoshin]

Well, I'm not on Copaxone; I'm in a clinical trial. So far as I know there are no special dietary recommendations or restrictions with any of the DMDs.

There are some people who think that special diets, such as low-fat, anti-inflammatory diets with omega-3s are helpful, at least in some people with MS. A couple of the better known ones are the Swank diet and the Best Bet diet. These, I get the impression, tend to work better for people early in the disease process and with relapsing-remitting MS (which is associated with inflammation). There have been no rigorous trials and thus no proof that these diets work. On the other hand, it hasn't been rigorously proven not to work. Effective trials on diets are difficult to finance and run.

There's also the point that inflammation, relapses and lesions are not the whole of MS. There's also progression, which is more associated with neurodegeneration and axonal damage. For example, I have very few signs of inflammation (never had an enhancing lesion and don't have problems with general signs or inflammation like CRP--my last one was less than 0.1), don't have a lot of lesions (at least on the brain), don't have clear-cut relapses or especially remissions, and yet I keep getting worse.

So really it's something you have to look into for yourself and decide if it's worth trying. They're generally healthy diets so they're unlikely to be harmful.

sho

[Nancy_LA_MA]

A question for the two who mentioned change in diet:  Was this part of the instructions that go along with the Copaxone?  Just wondering.  

[shoshin]

I'm not on Copaxone, but Copaxone does take a while (I think maybe around six months) to take full effect, which you've passed in a way, but not at the proven dosage. In addition, the DMDs are not said to improve existing damage (some of the ones in trial now are said to have neuroprotective effects, but not the FDA-approved ones except maybe Tysabri) . They are prescribed to slow down and perhaps prevent future damage.

I think it's very hard to say how well they're working if only because it is impossible to say what would happen to you as an individual if you hadn't been on a DMD. From what I understand, when they did trials, not everyone seemed to benefit, but unless you start to go downhill rapidly, it's hard to say that they're not working. I think, too, that the decrease in relapses and progression was really proven statistically and might not be noticeable to an individual.

So it would seem to be like a bit of extra insurance to try taking the Copaxone every day while simultaneously working to improve you diet and health by other means.

I did find a couple links that discuss a couple small scale trials that looked at Copaxone every other day:

http://www.thisisms.com/article-topic-7.html (go to the section called "Copaxone Every Other Day"

They quote "The authors reported that results with alternate day therapy were not statistically different from those achieved with daily treatment, aside from a lower dropout rate with alternate day methods." However, they also say that both studies were small so it's difficult to say if the results are really reliable.

Another link with more info on those studies:

http://www.thisisms.com/downloads/Cop_Every_Other_Day.pdf

FWIW

sho

[cainer]

hi!! welcome!!  i to am taking copaxone at first i thought id be one big red bump!! but its not bothering me much now they say it just slows it down-hopfully!- so i take it everyday and have still had a couple set backs but pretty well recovered!! but now am begining not to tolerate certain foods at all!!!!  -needed 2 lose some weight- but not this way!! be well!! tick

[doublevision1]

It may be too early to know if it's helping me, but early signs are positive.  Last December, 6 months after starting Copaxone (after a brief, unsuccessful run at Rebif due to side effects), I had a short lived bout of ON, with full recovery in days.  I was discouraged, having a relapse so soon after starting treatment, and only 8 months after my previous flare.  However, that was 10 months ago, and this is my longest stretch relapse-free since dx in 2007.  Might be the Copaxone, might just be lucky.  Last spring 2008, my neuro was calling my disease 'very active' despite being in the early stages.  He was contemplating having me go from Rebif right to Novantrone and not even trying Copaxone.  I'm glad I took the more conservative route.  I do take Copaxone daily as directed.  I forgot to take it just one time, and ended up taking it 36 hours after my previous injection, instead of the usual every 24 hours.

What does your neuro think about skipping a dose every other day?  My understanding is that Copaxone is approved specifically for daily use in order to be effective, as demonstrated in clinical trials.  The way my neuro expained it, is to take it as per instructions or you may as well not take it at all (though forgetting to take a shot on rare occasion is not the end of the world).  Perhaps this is why you are not seeing the results you would like to be seeing.  If your neuro has supported your skipping doses, you might consider seeking a second opinion from a MS specialist.

[Deb61]

I've been on Copaxone since March 2008.  I've actually have seen improvement.  It took almost year, though.  I was having a hard time walking, and was going to need a wheelchair in the summer of 2008.  By the time December 2008 rolled around, I began walking without problems.  There are many symptoms that have stuck around, but I have had improvement.  My neuro thinks it is the Copaxone that is working for me.

[HVAC]

I am no Doctor. I was told by my MS Specialist not to skip a day because damage can occur with out symptoms. When I was having trouble affording it they advised me against every other day. It might be that it has never been studied every other day so that is how the FDA approved it. Since the interferons are not every day it would make sense if that Copaxone worked longer than 24 hours that is how it would be administered.

I am doing all the things you are with diet but I am not take the gamble.

Oh and Copaxone has done nothing for my symptoms. My MS Specialist told me that it may not help symptoms, just slow progression. I am getting weaker on the left, but I am hoping the it is slowing the lesions.

I can't take interferons so for me it is the only choice.

Good luck,
Alex

[Charley123]

I take Copaxone every day and have been on it for about 2 months.  I think it is beginning to work as I am not using a cane any more and have not bumped into a wall in a couple of weeks.  Also my head seems to be getting clearer...now that's a miracle in itself.
I was told that I needed to take it every day at the same time and that it might not kick in for 2-3 months or a bit longer.  I've had short remissions lasting a couple of weeks in the last 5 years and this one seems to be heading into the third week.  That hasn't happened before, so I'm trying not to get too excited about it..just yet.
I've had mild side effects and so the drug has been really no problem at all to take.  
I also wonder why you are taking it every other day.  
Check with your doc?  I hope it will work for you too, Charley

[Erin0313]

Hi & Welcome :)

I didn't have much luck with Copaxone. I didn't have terrible side effects it just wasn't slowing down my progression so it was time to move on to other meds. Other members have had good results and hopefully can share their success with you.

My question is why do you take it every other day? Did you decide that on your own or did the doctor suggest it. I know that when I was on it I did it daily and thought that was the dose protocol.

I would think about calling your doctor to discuss concerns for any signs of progression.

Good luck
Erin :)