Off meds.. Your thoughts please...

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Off meds.. Your thoughts please...

Postby tt89 » Mon Nov 10, 2008 9:24 pm

I was doing so so on I thought but then it started again...shots being too awful..side affects..I could not move, stiff and in pain...could not do anything but barely do my job and sleep...I lost my quality of life..could not go anywhere..not even church...getting up to go to work was a HUGE ordeal for me let alone anything else...and I stayed in pain. I called my pharmacy and said no more meds please. Stop the shipment. I've been off them two months now...and while I know I still have MS..forever...Even my worst day is 100 times better than everyday I was on that for now Im going to just go at this alone. No meds..for my worst days which I may have one MAYBE once a week....and I'm just talking some pain...I take a little pain medication and I do fine...but now Im doing so much better with work, doing so much better getting out, going to church, being with friends...I feel like I have my life back.
I know the MS is still there. I have little reminders of it but I just cannot even think about going back on any sort of shots and that other medicine for muscle pain and all is for the birds. I flushed it all down the toilet.

Anyone feel this way and do exactly what I did...

I do NOT advise anyone to do this at all. You stay on your treatment plan or what you are doing that works for you. I made this decision freely and on my own...

To be honest. My Neuro docs do not know..I don't see them until Jan when I have a new MRI done and all. I pray that its a good visit..

The Copaxone was making me worse as did the other shots ( Betaseron)....Now I walk 2 hours a day..YES 2 hours a in the morning, one at night..and I work out....more than ever...and I feel good..

I've lost weight and am getting in tip top shape which is important for MS people for later on should I become where I cannot walk or something which I pray never happens..

Its just my personal feelings that I don't really believe any of those meds do anything...maybe they do but for me they robbed my life more than the MS did. I may have to go back to them one day..I hope not but for now...I'm living my life best I can..and enjoying it.

Thanks for listening
Hope everyone is well.
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Postby MattB » Mon Nov 10, 2008 10:53 pm

I wonder what the specific difference is between men and women when it comes to reaction to Copaxone. I've not had any site reactions beyond the initial sting and occasional tiny welt. Granted the area is a bit sore to the touch(barely noticeable though) but it just is nothing like many of the women on this board have described. Perhaps someone with more expertise could shed some light on the situation?
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Postby Cleremond2000 » Tue Nov 11, 2008 3:32 pm

I've been on the drug now for 9 months. I recently had a brain MRI last month and I have no new lesions and one of them has actually shrank. That being said....i feel MUCH worse on a daily basis than I did before I started taking the drug.

The lassitude and spasticity in my legs is a daily thing now, where a year ago, I would only get wiped out when doing highly physical things.

Its difficult to know if its just MS or if the drug actually makes things worse.


I have more MRI's for the spine and neck coming up next week so I'll know more soon.
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Postby MattB » Tue Nov 11, 2008 8:32 pm

I've never read that lassitude and spasticity could be side effects of Copaxone but that doesn't mean it's not true.

Good luck with your neck and spine MRI!
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Postby Misdiagnosed » Thu Dec 04, 2008 12:55 am

Copied from the net:

'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.'

Copaxone made me sick as a dog and wish I could have the last 4 years of my life back.
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