Coming up on 15 years

[jstinnett]

Hello All,
My experience with Copaxone has been very positive, my RRMS has mostly been in remission since the 5th year of treatment. I haven't had any major events, still get "bad days" and the occasional neurological weirdness, but I am still ambulatory (walking) and fairly active. I have noticed a very gradual overall decline in my strength and stamina, but hey, I am not getting any younger at 63....

I had what appeared to be a PPMS diagnosis when I first got sick, one bad relapse after another for about 1.5 years. I changed neuros, and the one got me "approved" by Kaiser for Copaxone.
The effect wasn't immediate, but over time, I experienced fewer relapses and symptoms.
I even re-trained, and after a couple of years, went back to work.
I missed a total of about 30 days work in the next 10 years. I just retired from the job I held for over 10 years. Maybe it was the Copaxone? It sure didn't hurt.

My only negative comment about the Copaxone treatment itself are the site reactions. I get a pretty nasty local reaction nearly every injection. I have so many knots around my body that I could easily use the nickname "Lumpy". I have gained about 30-40 lbs over the years, and lord knows I would have run out of good injection sites without expanding my overall "area". So I don't fret about my weight too much.
I consider myself one of the Lucky Ones, for sure. I have a couple of friends who were dxed before the ABC drugs were available. Their outcomes were tragic. I won't go in to the details.

However....
The current struggle by Teva to maintain total control over the drug is disturbing to me. I think Teva is entitled to earn a good living from the drug, but they have raised the price of Copax to an absurd amount, meaning many whose lives could be saved from a lifetime of misery and eventual death will never have this treatment, if Teva gets their way. The Affordable Care Act has probably helped some to get access, but not all.

I don't think the generic copaxone maker(s) are 100% on our side either.
I feel like we are being held hostage for ransome to a certain degree. It's not like we are able to make our own Copaxone in the kitchen.....

I hate to be so cynical about this, but whatever happened to medical researchers like Jonas Salk? The man who pretty much wiped out polio, and refused to take a nickel for his efforts.

Carry on!

[Mamabug]

Yeah. Hard to see researchers, who should be hoping to help patients, focus so much on profits. And, sometimes, absurdly high profits.

[DisneyCaptive]

A Solution to the Cost Problem

The reason the drug companies charge as much for drugs (both brand name and generic) is because, in the US, they can. In other countries they can't get these outrageous prices so they charge less. The US customers are paying the price for the research and the rest of the world is getting the benefit. In a sense, it's just another form of foreign aid.

There is a simple solution for this. The drug companies should not be allowed to charge US customers more for their products than the lowest amount charged worldwide. If it's $1000 in Canada then it can't be more than $1000 in the US. If it's $500 in the United Kingdom it can still be $1000 in Canada but it can't be more than $500 in the US.

They won't refuse to sell it in the US because they won't give up such a huge market. This may mean that people in foreign countries who can afford the drugs would not be able to afford it under the new structure. Is that fair? Probably not, but what is happening now is not fair either. If Canada or the UK don't like the pricing there is nothing preventing them from doing the same thing. This would result in an equitable pricing structure. Prices would still be high but not as outrageous.

I'm sure there are a lot of international trade and other barriers to this approach but this would work.

[jstinnett]

You and I think alike.

By the way, I was switched to Glatopa by my healthcare provider, the "cost" was about 3700 for 30 days, they were saying the "cost" of Copaxone was 4800 or so....
When I started on Copaxone, I think it was around 800 a month.

[Mable]

I just want to second everything in JStinnett's original post--especially for anyone newly diagnosed.

I was diagnosed at the end of 2011, and chose Copaxone because it has fewer side effects than the other meds available at the time. Today I might go with something else, but the truth is, C has been good to me.

I haven't had any new lesions or relapses since I started on it (and at diagnosis I had plenty). I'm still working. And I walk up to 5 miles a day for exercise

I still have more fatigue than I'd like. And I think Copaxone makes me feel on the verge of a cold all the time. But like the OP says, I knew a couple people who got this disease before the meds, and they didn't fare nearly as well.

As for the cost--that's between the corrupt drug companies, government, and insurance companies. It's obscene, but entirely beyond my control.

[cptmelissa]

Big Pharm's monopoly

A big part of the problem in the US with the cost is that Big Pharma was able to convince Congress to pass a law forbidding Medicare from negotiating decreased cost of medications. It also prevents other large government health care organizations, such as the VA and the Department of Defense, from trying to negotiate lower drug prices.**Let's not turn this helpful thread into a discussion about politics.**