Life with MS & EDS

January 6, 2009

Decision Time

Tomorrow is my neurology appointment and it’s time to pick a medication. I’ve 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, and surfed around online to see what others had to say.

Before I continue, you should know I’m a project manager by trade. To be more specific, I’m an IT Portfolio Management Specialist. For most of my career I’ve done things such as evaluate projects, set scoring criteria, and provide data to senior leadership for decision-making. So, I’m trained to do research, create a scoring model, and assess alternatives against the criteria. What better way to think through this decision that to do the same thing here.

I have an old version of a decision-support tool which I used to create a model with four criteria and then compared their importance against one another. Here’s how it turned out:

Priority Graph

Priority Graph

Some of the text cut off. The first two are “Can tolerate short-term side effects” and “Can accept long-term side-effect risks.” In case you can’t see the graphics, the last two are “Number of shots” and “Ease of doing the injections.”  Drug efficacy was not considered because they all seem relatively equally effective in studies and therefore that wouldn’t differentiate the drugs in any meaningful way.

A bit too anal-retentive of me? Then I rated each drug against the criteria and here’s what I came up with:

Alternatives Graph

Alternatives Graph

There’s a lot of data behind this chart, but obviously Copaxone is way out in front. If you’ve been reading the other posts, you probably already figured out that I was leaning towards Copaxone. It really comes down to the side effects. While Copaxone obviously scored lowest in number of shots (daily injections), which I thought would be my main consideration before doing the research, it turns out that was the least of my concerns. Quality of life turns out to be much more important. The last thing I want to deal with is flu-like symptoms (even if they do subside after a period of time) or depression and I certainly don’t want to worry about the risk of long-term side effect like liver disease or thyroid issues, both of which already run in my family. So that rules out all of the Interferons (Avonex, Betaseron, and Rebif) and the only one left standing is Copaxone.

I’m looking forward to seeing what the neuro has to say tomorrow. Wish me luck! If you see this before mid-morning tomorrow and have suggestions for questions I should ask him, please let me know.

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January 5, 2009

Drug Evaluation #4 – Rebif

Rebif is the medication I knew the least about before watching their DVD. I’m glad I saved them for last. It was a well-done marketing tool. 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 included stories of people who use Rebif. Rather than having them direct responses to an interviewer, they just showed the people talking. That made a big difference in the video’s tone.

After already seeing 3 other marketing DVDs, I didn’t think there was much more to learn, but they proved me wrong. Their general info was the same as the others (what MS is, what it does to the body, symptoms some people get, basic vocabulary, etc.) But, every drug company has an angle and the makers of Rebif certainly played up the “slows disability progression” aspect. They all need to differentiate themselves and this is Rebif’s approach.

It’s obvious that Rebif considers Avonex to be their main competition and that they are targeting people who may want to switch from Avonex to something else. I really like the idea that it is an Interferon beta-1a, which occurs naturally in the body (just like Avonex). I finally looked up what the difference is between 1a and 1b (Betaseron):

Interferon beta-1a is produced by mammalian cells

Interferon beta-1b is produced in modified E. coli (there’s a turn off!)

Like the other drugs, it has an auto-inject contraption. They are down to a 29 gauge needle, just like Copaxone and only one number up from Betaseron. I’m not sure if any of the others do this or not, but when you start Rebif they have a Titration Pack, which starts at a lower dosage and increases to the full strength over about a month. (I thought that was interesting. It reminded me of my allergy shots.) The drug comes in pre-measured, pre-filled syringes and can be out of the fridge for up to 30 days (although they seem to recommend keeping it in the fridge and removing it 1 – 4 hours before injection time.) Like the other drugs, they have a support system with nurses and advisors. Rebif spent a little more time than the other specifically talking about financial assistance.

I honestly liked what I saw. Rebif is taken 3 times a week and you choose the days as long as they are 48 hours apart. So, you can pick Monday, Wednesday, and Friday and never do it on a weekend. It has a good track record and is proved to reduce MRI lesion area and activity, reduce relapses, and delay disability progression relative to placebo treatment. Their tests have shown that people have less flu-like symptoms compared with Avonex, but everyone does react differently to the various medications. The injection site reaction was more frequent than Avonex, probably because of the inter muscle shot vs. the under the skin shot.

But, they lost me at the side effects. Like the other interferons, Rebif can mess up your liver, thyroid, and white blood cells.

After the video I looked through the materials in their package. Something in there actually explained a problem I’ve been having. In their symptoms section they talk about Nystagmus. This is an uncontrolled horizontal or vertical eye movement. This has been happening for a while now in my right eye (the same one with the optic neuritis). I only notice it when I’m working on the computer. I’ll be looking at the screen and then notice my eyes quickly shift to the left and then go right back to where they were focused before. It’s nice to have a name for this annoyance.

Well, now that my reviews are done, it’s decision time! My neurology appointment is Wednesday morning, so I don’t have a lot of time left. I’m typically rather indecisive, but I think I’ve done enough research now to be able to make a decision. It’s a good thing I have a cut-off date or I’d just keep doing research and never pick one!


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.)


December 3, 2008

Drug Evaluation #1: Betaseron

Filed under: Uncategorized — by mseds @ 9:57 pm
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Last night I got through the first packet of information from the pharma companies. Let’s see how the Betaseron folks did at trying to win me over.

The materials were nicely packaged in a fake leather, zippered binder. It contained a DVD, spiral-bound book, pen, paper, Pathways enrollment card, small brochure, and 2 of those technical medication guides. The first thing I did was go for the DVD. The case has a leaver so it doesn’t even need to be opened! (Am I not supposed to be able to open a DVD case?)

The first thing I noticed is that they obviously make different versions of their publicity package and I definitely got the “young person’s” one. Then I realized I wanted to take notes. It was nice of them to include the pen and paper so that I didn’t even have to get up. It’s nice that they support laziness.

The DVD content was useful. It was mainly the stories of 3 women and 1 man along with a “BETA nurse”, and a neurologist. The personal stories didn’t really win me over, but it was a nice way to share information about living with MS. One statement really stuck with me. A woman was talking about how people didn’t really know how to take her telling them she has MS. One person said, “oh yeah, Jerry’s Kids.” She’s like, “no, that’s Muscular Dystrophy.” Another said, “oh yeah, Michael J. Fox.” No, that’s Parkinson’s. There is no “face of MS” that I can picture. Does anyone else have an “image” of MS? The more I think about it, the more I think of Diabetes. It doesn’t have a “face” associated with it. Tons of people have it and have to take shots on a regular basis. It’s just a part of their life. They have good days and bad days and there are complications to watch out for. Perhaps that is what MS will be like for me and why there isn’t a known image out there for it.

It also occurred to me that if I am going to have one of the two auto-immune diseases my family seems inclined to get, I’d much rather have MS than Diabetes. At least with MS I don’t have to cut out chocolate!!! See, I found a bright side!

I did learn a few new things. I now know that white matter (the neurologist on the DVD said something about “contrast enhancing legion,” but I really don’t like the term “legion”, so I missed part of his statement) is new whereas “black holes” (another term I don’t like!) are old and show areas of “permanent disability.” Apparently about 40% of white matter will become “black holes” which is why EARLY treatment is so important. I also learned that being “cane-free” after X number of years is apparently the benchmark companies use to indicate effectiveness. I’m not sure I’m ready to fully digest that one yet.

The literature for Betaseron was all about EARLY treatment. That freaked me out a bit since I know now this has been going on in my brain for about 7 years now. There’s nothing EARLY about my starting medication. This is one strike against this drug, although it is winning me over by having the SMALLEST needle on the market and for having a long track record. I’m a wimp, so it’s going to be hard for the other drug companies to compete against the smallest needle advantage. I also liked that there’s access to a BETA nurse 24/7. I sure hope doing the injection is less complicated that the Medication Guide made it sound or I’ll be calling them often! Oh, and Betaseron doesn’t have to go in the fridge. Not having to let the drug “warm up” before injecting is another plus. If I can get past the frequent use of the word EARLY, another down side is that this medication is given every other day and the major side effect is flu-like symptoms. I’m not sure how quickly they subside, but apparently ibuprofen helps. Although, if I am going to feel like I have the flu every other day for several months, I’m not sure I’m thrilled about the dosage frequency. I guess I’ll have to see what the other drug companies have to say. I’m pretty tired, so those other packets will have to wait another day or so.


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