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 9, 2008

Avonex and another Term I Don’t Like

Filed under: Uncategorized — by mseds @ 9:57 pm
Tags: , , ,

Well, I tried to review Capoxone next, but the DVD was scratched, so I moved onto Avonex since a friend is taking it. The DVD worked, so I was off to a good start.

The DVD has two options, one for those just starting out and one for those looking to change their treatment. I chose the first and never got to the second. There was “fine print” on the start screen that some of the people were “sponsored by Biogen Idec”, which made me feel like this was less genuine than the Betaseron video (I don’t remember a similar caveat there.) A company rep narrated the whole thing which made it less personal and more like an infomercial.

It was comforting that this has been around since 1996, that over 130,000 people are taking it, and that it’s the #1 prescribed drug worldwide.

It started with a general overview of MS which shared only very general info. Then they had a handy comparison chart:

Avonex compared against the other main MS drugs

Avonex compared against the other main MS drugs

Unlike Betaseron which was all about “the smallest needle”, Avonex is all about the convenience of “once a week.” My friend did say that she liked that she only had to remember that she has MS once a week when she does her shot, which I thought was a good way to look at it.

They talked about their impressive track record at slowing the progression of MS. Then they started talking about white spots and reducing brain lesions (there’s that word again.) After that they said an even more horrific term – “brain shrinkage.” This was the first time I heard this one and I dislike it even more than “brain lesion.” They talk more about it in their printed materials, but basically it’s brain atrophy (not any better) where you loose brain tissue and it’s replaced by fluid. If they are trying to scare me, they are doing a good job. I’m just not sure it’s scaring me the way they intend as I’m leaning away from trying their medication (I’ll get to why in a bit.)

I also learned about neutralizing antibodies and how they can decrease the effectiveness of MS drugs. Avonex has a low percentage chance of this happening, which was good to hear. I’ll have to remember to find out if the other medications fair similarly.

It wasn’t until this point that they brought up that it is an intramuscular injection. It was smart to wait until this far into it, although the graphics used draw attention to this earlier. They tried to comfort the viewer by reassuring them that the most of the pain felt with injections is closer to the surface of the skin anyway. They also talked about the flu-like symptoms, but those typically pass after a few months and didn’t seem to stop people from taking the medication.

Then they move onto “Living with MS” and talked about their support options. They have people that will help you with things like financial assistance, insurance benefits, prior authorization, nurse support, online mentors (other people with MS who can help you out), live events, etc. They assign a personal case manager to get you started and then you scale back to a therapy support coordinator. They didn’t seem as warm as the BETA Nurses, but they did seem to have a good support system in place.

Here’s where I should have stopped watching the video. Have you ever watched “A Baby Story” on TLC? Well, before I gave birth to Big Sister, I’d always watch that show, but would turn it off the moment the woman went into labor. I didn’t watch a single episode from start to finish until after I had her and have yet to keep one on where they do a c-section. Why? Have I mentioned I’m a wimp who is EXTREMELY squeamish?!?

The next part of the video was about the injections. I was curious, so I kept watching even though I should have turned it off. If my husband was home I’m sure he would have encouraged me to stop watching. Nevertheless, I kept going. They have two options for this part of the video, too. One was for the prefilled injections and the other was for the powered form that you mix. The later sounded too confusing for the time of night that it was, so I went with the simpler, already mixed version. They start off trying to be reassuring, saying that thousands of others are doing this, too. It was the “you’re not alone” message.

It gave basic information (it needs to be kept in the fridge, but can be at up to 77 degrees for so many days, never freeze it, how to transport it when traveling, etc.) and some tips (let it warm to room temperature for 30 min. so that it’s more comfortable to inject, ice the injection spot, etc.) There are two needle size options, which I didn’t know before, but I guarantee the smaller one is for skinny people (I’m just guessing.) They note that the best places to do the injection are the middle of the thigh or the upper arm (if someone else can give them to you), they stress rotating the injection spot, and noted not to inject into scars (I’ll have to remember that since I have one in one of those areas.) Then they tell you to relax since it won’t be as painful that way. Okay, that wasn’t comforting. I was tempted to turn it off here, but kept watching. They then say to use a “quick motion” to do the injection, but what I saw was STAB YOURSELF. Oh, then they say you’ll feel resistance and that it’s normal. Really, I didn’t want to hear that either. They wrap up by saying just wipe away any blood. Okay, at least they were done.

They remind you to take time to process what you’ve heard and to talk things over with a doctor. Then they move onto the important information at the end. They note that the medication can make you feel “unusually sad” and that if you feel “sad” to tell someone right away! Lovely….

With that I moved onto the printed materials. The nice cloth zippered binder strangely avoided using the word “Avonex” in favor of using the company name “Biogen Idec.” Even the cover didn’t say Avonex. The contents included a pen, personal journal (with stickers!), a wallet card with their 24/7 toll-free number, product guide, and three spiral books (1. Questions about MS; 2. Treatment Options; and 3. Start on Avonex Now.)

The binder (and DVD, too) stressed early treatment, although not to the same extent as Betaseron. There was a whole thing about “brain shrinkage” again. Just wonderful. They also included the Expanded Disability Status Scale (EDSS) which was somewhat interesting and somewhat depressing.

Expanded Disability Status Scale (EDSS)

Expanded Disability Status Scale (EDSS)

The interesting part was that there is hope for MS patients now whereas before ending up as a “9” was much more likely. Even if Avonex isn’t the one I go with, I imagine most of the medications keep things in that 1.0 – 2.0 range now within 5 years. Heck, I’ve likely had MS for at least 5 years already and I’d place myself at a 1.0. That’s without the medication. With medicine I expect I’ll be able to stay in that good range for a long time.

So, the Avonex material was not as comforting as the Betaseron pitch, but I’m not ruling it out just yet. Really, I should NOT have watched that injection part just yet. I think that was too soon to see.

Avonex Handbook

Avonex Handbook

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