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Posted: Wed Jul 02, 2008 4:10 pm Post subject: To Copaxone or not to Copaxone
Hi All,
My 33 year old wife is facing a decision on Copaxone and I'd be interested in people's feedback.
Bit of background - she had her first Optic Neuritis 11 years ago and subsequently has had one more Optic Neuritis 4 years ago and a Sensory relapse this year - so 3 relapses in 11 years. In all cases she has recovered 99%.
After the last attack our Neuro reviewed her case with the New Zealand expert on MS and he has recommended she go onto Copaxone. This is a big decision in New Zealand as no CRABS are subsidised unless you are EDSS 4 or greater so it is a significant cost.
Thankfully we can afford this but I am slightly torn as to whether it is really going to be woth it.
Cons: I have read both the Cochrane review of Copaxone and a recent review in the European Neurology Journal http://tinyurl.com/4cx3ye which indicate Copaxone is no better than a placebo at preventing disease progression.
Pros: I understand the side effects are very mild and I have read the long term study showing substantial reduction in disease progression on those who have stayed on the drug for over 20 years (of course, the study has incredible suvivorship bias which may make it worthless?).
Are we really going to be achieveing anything paying to go on Copaxone? Should we be asking to look at TYSABRI which appears to be the most effective? Or do we cross our fingers for the next two years until FTY720 or Tovaxin hits the market?
I realise these are not black and white questions but thoughts would be welcome!
Joined: Sep 11, 2007 Posts: 560 Location: southern California
Posted: Fri Jul 04, 2008 11:27 am Post subject:
Hi D-red,
The following reply is personal and subjective, which is all any of us can offer. You have the facts, and will, obviously, need to make a decision with your wife and her doctor. Sounds like you have all the info.
In the states, many folks are put on CRABS after a clinically isolated syndrome, which is what my husband had. His doctor recommended copaxone, and he has been relapse and progress free for the 16 months he has been self injecting every day.
His reactions are minor, and we think the copax is helping him...HOWEVER, he is also on the Swank diet, takes a multitude of supplements and continues to exercise his mind and body daily. Would he be in remission without Copaxone, we'll never know.
We're throwing everything we can at the disease. Until more is understood, it's the best we have.
Wishing you all the best,
AC _________________ Husband diagnosed RRMS March 2007
20 lesions brain/spine
Copaxone, Swank, supplements, laughter
Joined: Apr 10, 2007 Posts: 41 Location: Reston, Virginia
Posted: Mon Jul 07, 2008 6:34 am Post subject:
I am also for doing everything possible as soon as possible to fight MS. Since MS can have such varied effects on people it is hard to recommend one approach, but it is better to be safe than sorry. I am on copaxone, the best bet diet and the vitamin supplements recommeded by the best bet diet. I am doing very well well right now, just confirmed with a good MRI report. My uncle died last year from MS and I have seen what can happen if you do not do anything. Also, just read a good report on how effective 20mg dose of copaxone is, with no side effects. My thoughts are do not wait until the effects of MS get bad because it might be too late at that point to do anything. I think you have to do everything you can as soon as you can.
It's a tough call that only your wife can make. As I am in the UK and on the NHS my neuro would not have recommended copaxone to me if I had had the same frequency of relapse as your wife. Unfortunately I had far more and have been on copaxone only 2 weeks now. In terms of living with it, I have had no adverse side affects other than a fwe red patches and some stinging.
Ultimately, if you both believe that it will help her, and you can afford it, then it's worth the money.
Its a very tough choice, especially as your wife has so few relapses.
I think you should ignore the fact that you'll have to pay for it. That should not influence your wife's decision because if it is something she feels would do her good, then she should be on it. If she feels it's something that would be more hassle than it's worth, then she shouldn't be on it.
Ask yourself the question - if Copaxone were offered free of charge to your wife would you, and she, want her to be on it?
All I can say is that I have done very well on Copaxone. My relapses went from four a year down to one every two years. I have experienced significant lipoatrophy though, on the downside. With the amount of relapses I was having prior to Copaxone, and the level of disability that was staring me in the face, Lipoatrophied legs doesn't hugely bother me, and lots of subcutaneous injections carry the same risk of Lipoatropy.
The relapse rate decreased by 17% every 5 years (between years 5 to 30 post-onset), but this decline increased in magnitude with increasing onset age. Women and those with onset sensory symptoms exhibited a higher relapse-rate (p<=0.001).
Over three-quarters of patients (1692/2189) experienced a 5-year relapse-free period during the RR phase.
Conclusion: Relapse rates were age and time-dependent.
Our observations have clinical implications: 1) any drug able to modify relapse rates has the greatest potential for a population-impact in patients <40 years old and within the first few demi-decades of disease;
2) continuation of drug beyond these times maybe of limited value;
3) long-term follow-up studies must consider that relapse rates likely decline at different rates overtime according to the patient's onset age;
4) a relapse-quiescent period in MS is not uncommon.
Since your wife is 33 this research would seem to suggest that she's young enough to potentially benefit from a reduction in relapses.
On the other hand, there's other epidemiological data indicating that disability levels are age (rather than relapse) dependent.
Best of luck in your decision making. I always seem to want just a bit more info than I'm able to find.
I had to make the same decision that you are going through, in my case I was fortunate to not have the financial implications as I'm in the USA and I have good private insurance.
I read the Cochrane Review report about copaxone too, and I discussed this exact article with my neuro (a very renowned and well published MS specialist). He was adamant that in his practice he sees "responders" and "non-responders" to copaxone, in roughly 2 to 1 ratio. If you're a "responder" (2/3 chance so says my Doc), after a couple of years on the drug the annualized relapse rate drops way down to ~0.2 or so and in some cases some damage is actually reversed. The next piece of information is particularly compelling - the earlier in the disease you take copaxone, the more likely you'll be a responder.
His assertion is that the studies that the Cochrane Review referenced (which came out of Italy) were based on people who already had EDSS scores in the 2.5 to 3.5 range prior to initiating treatment. He concedes that he has seen in his practice that copaxone is often not the right drug for such people. But he firmly believed (and believes now) that for people with little to no present disability, it does help them alot. He also believes that the Cochrane Review selectively chose to ignore a couple of studies which would have shown copaxone in a more favorable light (remember, Cochrane is a meta-study, not a clinical trial publication itself).
I was skeptical, but went for it, esp since copaxone appeared to have the least invasive side effects of any of the CRAB drugs. Now here I am 13 months later and sure enough my followup MRI shows some moderate improvements in one area of the brain, and my neurological exam is a bit better. I have had no relapses in the 13 month time period. I have however had 3 IPIRs, unpleasant I can tell you for sure. I have not had any serious injection site reactions or any lipoatrophy (men usually don't get lipoatrophy).
For completeness I need to mention that I also take LDN (and have for nearly 5 yrs now), and extensive vitamins (Alpha Lipoic, Fish Oils, Trans Ferulic, Calcium Magnesium, B12, and a general multi vitamin). I followed this regimen alone without copaxone for nearly 4 yrs and had "several" new lesions according to MRI and 1 relapse.
Thanks everyone for their comments. I am a bit of a information junkie so really appreciate the references to studies and personal experience. My feeling now is that we will go down the Copaxone route.
DizzyDean, the comments of your Neuro make a lot of sense and I suspect when we meet with the Neuro who is recommending my wife go on the drug he will make the same comments. Of course its also nice to hear first hand that the drug has worked as he hoped for you.
I would say that one of the toughest things about working out treatment with MS is that so much of the data can be interpreted in so many different way depending on how you slice it. I guess thats why getting a good Neuro who can cut through it is so important.
I will make one last comment to dreddk, and that is some thoughts about the planning time horizon.
Take a look at the site http://mspipeline.wordpress.com and notice that there are ~20 drugs in phase III trials, and hugely more in phases II and I. This list is maintained by someone who moderates the thisisms site I believe. If any significant percentage of these drugs make it to market there will be vastly more (and better) choices for MS sufferers in 3-5 yrs time. I really don't believe that any drug has a chance to come to market just because of oral delivery, I also believe that it has to demonstrate superior efficacy and reasonable side effects compared to the CRABs and tysabri.
With that as a backdrop, my belief (and personal practice) is that you need to do whatever it takes to keep your body in reasonable physical shape until this avalanche of MS drugs hits the market. In other words, all the CRAB options and even tysabri may indeed suck (can I say that here?) in terms of limited efficacy and bothersome side effects, but in light of the enormous clinical trial pipeline, its not relevant to think in terms of being on any of them for more than a couple of years at which time a far greater assortment of choices will present itself.
Going without therapy for that period of time is also an option, but a risky one IMHO. Remember that the drugs are targeted at preserving current state, not reversing existing damage.
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I am a bit of a information junkie so really appreciate the references to studies and personal experience. My feeling now is that we will go down the Copaxone route.