Life with MS & EDS

December 29, 2008

Drug Evaluation #3 – Copaxone

I interrupted our enjoyable holiday week with a viewing of the next pharma company’s materials. I picked Copaxone for Review #3. I received the replacement DVD (the one in their info packet was scratched) a couple of weeks ago, but have been putting things off. It’s been nice ignoring MS and focusing on the holidays. My vision is still blurry from the optic neuritis, but since the pain went away a couple of weeks ago it’s far less annoying.

Friday night I popped in the Copaxone DVD around 8 p.m. I figured I’d have plenty of time to watch it and make my well-know Death by Chocolate Trifle (I’m making it again for NYE, so I’ll post the recipe soon) for the family gathering the next day.

Unlike the Avonex DVD, it didn’t have separate options for newbies vs. those looking to switch drugs. You could either watch the whole thing or go chapter by chapter. I watched the whole thing, but later regretted it. There were useless portions that I should have skipped.

The format of the DVD was part talk-show, part infomercial. The combination made it feel patronizing (or as Hubby said, “treated you like you were an idiot”.) They targeted their pitch to the lowest common denominator and I somewhat took offense to it. They explained what a placebo was for goodness sakes! I suppose this is helpful for some people, but the woman just sounded demeaning.

The narrator (a Shared Solutions rep) started out with the standard pitch to newbies (you’re probably scared, being on therapy is one of the best things you can do, take charge, empowerment!) All good stuff, of course. The video progressed to an explanation of MS, which other than trying to pass off the standard electric cord analogy as novel was pretty good.

Then they moved to what criteria to consider when picking a treatment. Here’s where they lost my husband. They start “visiting” with various people who use Copaxone. I think that’s great, but they way they were doing it and the time of year I was watching it (just a day after Christmas) made us think of the Christmas Carol, “now we’ll visit with the ghost of Christmas….” Once we got past laughing about that, there was useful information to be learned here. They mainly focused on how the medication would be tolerated and how Copaxone doesn’t cause flu-like symptoms, that there’s an auto-inject feature, that it is proven over the long term (although the other 3 I’m considering can also make this claim), etc.

After that, they lose me again. They go into how Copaxone is “thought” to work. Apparently no one really knows. A neurologist tried to explain what they do know, which is that it has a unique way of working both inside and outside of the central nervous system (CNS). There was a claim that it stimulates anti-inflammatory cells (this could be a benefit given some of my other issues, so that was intriguing) and then enters the CNS. This is thought to somehow change the way the immune system reacts to MS. Although he was only speculating about how the drug works, this was a better explanation that the other DVDs I reviewed so far. I think I can get past the not exactly knowing how this work. I was told the same thing when I got my Mirena and it is doing its job (I’ve not gotten pregnant!), so perhaps it’s how well something does its job rather than how it does it that matters.

After this, they lose me for good. I didn’t get anything out of the DVD again until they got to the injection demo. They did a good job explaining the clinical trials, including an open-label follow on study. Then they dumbed it down to an elementary school level and took far too much time to explain things like what “placebo” means. I felt insulted.

Soon after this part, I finally arrived at Chapter 6. At the end of every other chapter, it refers the viewer to Chapter 6 for safety information. Perhaps that isn’t as annoying when you watch chapters separately, but when watched one after the other, I got sick of hearing it. I know they need to do things for CYA purposes, but there must be a better way.

Anyway, despite my annoyance with the video, the side effects sound like something I could tolerate. This is obviously the core of their message. The main areas of concern are permanent indentations (destruction of fat tissue) at injection sites over time (that doesn’t sound pretty, but no one other than my husband will see these parts of my body and he won’t care) and the potential for short-term (15 min. or less) trouble breathing, rapid heartbeat, etc. as well as the injection site pain.

Like the others, Copaxone has its own support system. Theirs is called “Shared Solutions.” They offered nurse support, financial assistance information, peer support (they have this thing that sounds like the matches made via a dating service!), injection training, knowledge resources, etc. All of the companies seem to offer the same kinds of support packages, so this doesn’t differentiate them.

These couple of chapters seemed to take FOREVER to get through. I finally got to the injection overview. I felt anxious when it started, but not as scared as when I watched the first injection overview (that was on the Avonex review.) They offered some useful tips like using a warm compress, a daily planner to keep track of spots, labeling the injection packets in advance for the week with the injection site to be used (I’m a planner, so I liked that idea), and so on.

The next thing I know it’s around 10 p.m. That DVD was far too long! I knew it was late, but didn’t realize it was that late! I didn’t have a clock around or I probably would have turned it off much sooner.

Despite their marketing materials (there’s got to be a better format for the DVD), I’m not ruling out Copaxone. The main reason comes down to side effects. Although I liked the Betaseron pitch a lot, I’m not sure I’ll tolerate the flu-like side effects. Betaseron’s well-done presentation was all about the “smallest needle” and “convenience” of not need to be in the fridge. Avonex’s pitch was all about the “convenience” of weekly shots. Copaxone was all about how well it’s “tolerated.” While the injection site reactions and the potential for the body to freak out a bit after each daily shot, I think it sounds more tolerable than flu-like symptoms that last longer than 15 min. of inconvenience.

I am also concerned about the potential liver and thyroid issues associated with the interferon drugs. Liver disease and thyroid problems already run in the family, so they don’t need any extra help. I also appreciate that Copaxone has something that will hide the needle in their Autoject device. I’ve read a couple of other posts where this thing has caused problems, but I’m so afraid of needles that this is a big plus for me (I’ve previously mentioned that I’m a wimp, right?) However, I’ve also read good reviews and one post had a particularly useful way to remember how to rotate shots. While I don’t like the thought of daily shots, is it really that much worse than every other day? I think I need to start a pro-con list.

Next I’ll take a look at Rebif. I never thought it would take a month to get through all of this, but taking my time is certainly less stressful. I have until my next neurology appointment on Jan. 7th to make my decision.

Note: I checked out the Copaxone website and noticed that they released a smaller needle, too. They are down to 29-gauge compared to the 27 it was at the time of the DVD (Hey, Copaxone marketing staff – when you update the DVD with this great news, you may want to move away from the off-putting, demeaning tone and infomercial format!) That puts it in range with the Betaseron “thinnest needle” which is at 30-gauge. (When it comes to needle size, the higher the number the better.)


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6 Comments »

  1. I take Copaxone and chose it because of the side affect thing you mentioned. I didn’t like the idea of having “flu like symptoms” for 2 days after said shot. I envisioned myself doing the injection on Friday night and being out of commission all weekend. Not my dream so I decided quality of life was most important. In my case it’s been great. I started taking it right after I was diagnosed and I haven’t had a relapse since. Well, I have had some tingling, but that’s about it. Nothing that left me unable to go about my life (I work full time and everything).

    Comment by Merlot — December 30, 2008 @ 11:54 am

  2. That’s great to hear!

    Comment by mseds — December 30, 2008 @ 11:58 am

  3. I also use Copaxone, primarily due to the lack of depressive side-effects. I really didn’t want to possibly struggle against increased depression with any of the interferons. Doesn’t mean it would have happened, but I just didn’t want to deal with it.

    After starting Copaxone, I didn’t have any major relapses in about two years. But then I did have one following a very stressful time period, during which I was missing lots of injections. Could be that I created a weakness by missed doses.

    But overall, my neuro has been pleased with my experience and we haven’t needed to discuss switching. I don’t remember even watching a video, or anything. It sounds like Teva needs to improve their spiel a bit. 🙂

    Lisa

    Comment by Lisa Emrich — January 3, 2009 @ 11:00 pm

  4. I’m glad to hear Copaxone has worked for you. I definitely has a leg up given that is doesn’t have the kinds of side effects that the interferons have. The lack of the depression side-effect is a big deal.

    Yes, they definitely need to improve their marketing video! It was great that they included real patients taking their medication (so no offense to any of them!), but it needs to be streamlined and they need to reevaluate their tone and message delivery.

    Comment by mseds — January 4, 2009 @ 7:55 am

  5. […] Their format was similar to the others, but it was concise and certainly not demeaning like the Copaxone one. There wasn’t a dedicated narrator. Instead they used doctors and nurses to explain things and […]

    Pingback by Drug Evaluation #4 – Rebif « Life with MS & EDS — January 5, 2009 @ 6:20 pm

  6. […] done the evaluation of the 4 Multiple Sclerosis drugs I was given the choice of: Avonex, Betaseron, Copaxone, and Rebif. I’ve check out their websites, watched their promotional DVDs, read their packets, […]

    Pingback by Decision Time « Life with MS & EDS — January 6, 2009 @ 10:38 pm


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