Figuring It Out – part 2

As I mentioned in my previous post, I had made the decision to take Copaxone injections. The Monday after my Friday appointment, the enrollment application was faxed to Shared Solutions – a company owned by the company that makes the drug, Teva pharmaceuticals. I guess it’s like their customer service division. Their purpose is to get approval from your health insurance company for payment and deal with the pharmacy so that your supply of pre-filled syringes gets shipped directly to your house, as well as provide phone and online support to patients. They also send a nurse to your house to teach you how to do the injections.

On Tuesday the nurse called to introduce herself and give me her number so that I could call her when the drugs came. Damn, that was fast. By Thursday the pharmacy was calling wanting to ship me the drugs. Whoa. By then I was already questioning the hastiness of my decision. This process had been so drawn out… It was a full month between the time I’d gotten the diagnosis and finally got to see the specialist. It’s fuckin’ nuts that it should take so long to get to see a doctor when you’re under that kind of fear-stress. By the time the appointment rolled around, I was desperate to do something, to just get on with it.

The following week the pharmacy called a couple more times and the nurse called again. I was letting the machine get the calls and because I wasn’t responding right away the calls kept coming. I was starting to feel hounded. There was other stuff going on too, I don’t remember now what, but it added to the stress of the situation. I had also started researching hard and reading everything I could about the drug. Some of it very scientific, so not entirely understandable.

I learned that the approximate cost of the Copaxone injections is… ready for this?… $1,800 a month! That’s right, $60 per injection. Holy shit. If there was ever a time to be thankful for health insurance, this is it. My co-pay would be about $20 a month.

But, the more I read about the drug, and about ms therapies in general, the less I’m convinced that it’s the right thing for me to do right now. On top of that, I found I was missing answers to basic questions about my status that I should have asked the doctor when I saw him. I was too overwhelmed then to think of them though. I did later talk with him on the phone to ask some of the questions and didn’t find my conversation with him to be much more satisfactory than our initial meeting. I got answers but could sense his impatience during the call.

I did ask about the drug I want to try – low dose Naltrexone – and he quickly said that it’s not an approved therapy for MS and pretty much indicated he wouldn’t prescribe it. That doesn’t mean I won’t ask again though. 😉 Another issue is the level of disease activity visible on my MRI films. I hadn’t thought to ask to see the films previously and understood from the doctor who’d made the diagnosis originally that they were questionable. Not so, according to this doc. This surprised me because you’d think I’d have been told if it was significant.

At least he completely agreed with me when I explained that I felt I’d made the decision about the Copaxone too quickly and needed to take some more time to think about it. He suggested I make another appointment and that we address anything else at that time. When the doctor’s secretary phoned me back to setup the appointment, I told her to tell the doctor to expect to review my MRIs with me during the appointment.

I haven’t completely ruled out the Copaxone but I’m pretty certain that I won’t be taking it anytime soon. Primarily because I have concerns about the long-term efficacy and the side effects. I just don’t feel my present condition really warrants daily injection of a synthetic chemical that has about 30% average effectiveness, along with injection site reactions and possible panic attacks. There’s other things I’d like to try first, so that’s what I’m going to do. If I find my existing symptoms get worse or if new symptoms appear, I’ll seriously reconsider.