This Is MS Multiple Sclerosis Knowledge & Support Community

Does anyone find the whole copaxone experience over bearing? I mean they want a nurse to come to your house, they want a nurse to talk to you over the phone, they have an info guy call you for updates. To boot, when I have questions about the drug my doc tells me to call the copaxone company (It is called shared solutions) This is part of Teva the pharmaceutical that is selling copaxone.
OK, I'll come out of the closet and tell you all that I am a lawyer and my mind works in strange ways but if I noticed that every time you have a conversation with a copaxone person, they enter what you've said into a computer. I think they are getting ready for the possibility of class action lawsuits in the future. Plus it is a totally invasion of my privacy. These issues are private between me and my physician.
I finally had to cut them off but they wouldn't stop calling so I ordered call blocking from Qwest and that seems to slow them down.
The question is why is a medical company that is profiting from our use of a drug giving us medical advice? Weird weird....OK I'll admit I may be over the top and maybe some other people on line think they are helpful but I'm not crazy about the fact that TEVA pharmaceuticals are fighting like hell in court to keep their patten so that no generic copaxone will get on the market and perhaps allow uninsured patients the benefits of this drug.
There is lots and lots of money floating around in the ms world. I'm discovering that now and I feel like a pawn.
Thank you...love you all for listening.

Hey Renee, Welcome to someplace none of us want to be. Having said that, it’s a very good place to be – to ask questions, get answers and opinions, vent and share.
An overwhelming load of crap is dumped on you when you have MS and you've got to find a way to shovel a path out of it. I’ve been on Copaxone for 3 years. At the beginning, there was a lot of contact with them. The nurse came to the house (twice, actually), a lot of follow up phone calls, and to be honest a lot of calls to them from me. After the few months it slowed down quite a bit, and I don’t remember the last time I heard from them.
I’m a paralegal (in an insurance company, no less, and have pulled more than my fair share of litigation duty), so I see the way you’re thinking. But so many industries enter notes into computers. Last week I was having problems with my cell phone, so I called the service center. There was quite a bit of back and forth, and of course it was all in the computer. I guess it has to be because every time you call you get a different person. Same things goes for my doctor’s office, the cable company, and the place where I order my garden supplies. I really don’t think they’re unique in that regard.
However, I don’t like TEVA. I know they do a lot of good with their low-cost generic drugs, but you can’t help but feel used and outraged at the gouging they (and the other MS drugmakers) do on the pricing of the drugs. In my fantasy world, I would change the price of a toenail fungus drug or Cialis to $2,300 (which is pretty representative of the price of a CRAB) and drop the price of Copaxone by at least one zero. I wonder how long those nice-to-have-but-not-life-altering drugs would be around at that price???

What I find infuriating about TEVA is that they themselves make generic drugs, and profit from other companies' research...yet are trying to block other companies from making a generic of copaxone.

Teva filed a Citizen Petition with the FDA, in which it argued that synthesizing generic Copaxone would be "extremely difficult, if not impossible". In addition, because the drug is rapidly absorbed, bioequivalence studies would be inadequate, and full-fledged clinical studies using clinical outcomes would be required.
Leader Capital Markets analyst Yoav Burgan said that the decision was a very minor setback for Teva. "The FDA did not throw Teva down the stairs. It merely said that it was not prepared to address the case at this time because that would be premature. In its petition, Teva argued that approval of a generic version of Copaxone would require clinical trials because of the complexity of the molecule. The FDA said that it was premature to discuss the matter, so long as there is no decision about a potential approval of a generic version of Copaxone," he said.

link

This is pure BS to me. My hubby's on Copaxone 2 years and doing well...but he's changed his lifestyle/diet/supplements, too. I'm looking into the every-other day routine for him. Copaxone calls me everyday on my cell when his prescription comes due...to make sure we're staying with the program. ugh. I can't wait til we can kiss the CRABS goodbye.
AC

I am outraged with what I have discovered recently. First you do not want to experience what I am right now with a close friend. In order to avoid this horrible situation, I suggest viewing the movie Under Our Skin and doing the research on Lyme disease and the controversy surrounding the diagnosis, testing, treatment and insurance coverage. I would spend hours digging up information on the internet comparing ms with lyme. I then suggest finding an LLMD and starting antibiotics asap. Be prepared to get sicker before you get better.

My close friend is very very very sick and i know he has lyme but since he was diagnosed 13 years ago with ms he won't even consider. It is unimaginable that something like this can happen.

old news

reneelucia, I also thought it was a little much in the beginning when I first started on copaxone. I seemed like shared solutions main task was to keep me on the drug. They seemed to really keep close contact with me for at least a year, it's been over three years now and I never hear from them anymore. I am sure they are working off some numbers which if you stay on the drug for over a year you are most likely going to stay with it. I guess I have mixed feeling about the whole shared solutions thing, I think it was helpful but I thought they were a little pushy at times. Anyway good news is over three years on copaxone and I am doing very well, so can't really complain.

that's interesting. I also wonder about my medical confidentiality. Shared solutions says that it is confidential but their not my physician and they say they are not giving medical advice, so isn't it kind of like talking to your auto mechanic?
I think I've got too much thinking going on here. I am happy that you are having good results.

I guess I see it in a different light. I've always felt that the companies that offer the best support get the most business. When I have a question, it's comforting to know I can call and speak with a nurse. If I had to call my doctor it would be a couple days before I would hear back, or I'd have to make an appointment. It's like computer companies with great customer service no?

As for my medical history being shared, I don't consider it that confidential. Though, I can understand it being scary if you are worried about losing your job, etc.

In germany, for god´s sake, the copaxone-people aren´t so pushy.
I saw the nurse only once.
If you want to order stuff like a cool bag or so they try to talk you into their member program.
But if you refuse they don´t call you again.

When I took Rebif the serono-"doctor" even denied some side effects I had.
I wouldn´t believe them very much.
It´s all about compliance and sales - that´s it.

Ursula