Life with MS & EDS

December 3, 2008

Drug Evaluation #1: Betaseron

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

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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7 Comments »

  1. I enjoyed your review of the materials and look forward to posts of the other goodie bags.

    Try not to fret about the term EARLY. The idea is simply not to wait until lots of disability or lots of relapses have occurred before deciding to start treatment. Although you had optic neuritis years ago, that doesn’t mean that there has been active demyelination going on since then.

    I’m trying to be reassuring. Is it working?

    Comment by Lisa Emrich — December 3, 2008 @ 11:37 pm

  2. Hey Ivy
    I’m sorry you’ve had to join our world of MS, but you’ll certainly get lots of great support here with this group. And LIsa is always great with helping you answer questions.
    Good Luck in going through all of that material!!

    Comment by Abby — December 4, 2008 @ 8:53 am

  3. Yes, thanks, Lisa! It is working and I really do appreciate it.

    Comment by mseds — December 4, 2008 @ 11:57 am

  4. Teri Garr was diagnosed in 1999, but had symptoms since 1983. Montel Williams also has MS. There’s probably more, but those were the first to come to mind.

    Comment by Posey — December 7, 2008 @ 2:37 pm

  5. […] 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 […]

    Pingback by Drug Evaluation #3 - Copaxone « Life with MS & EDS — December 30, 2008 @ 7:44 am

  6. […] 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): […]

    Pingback by Drug Evaluation #4 – Rebif « Life with MS & EDS — January 5, 2009 @ 6:27 pm

  7. […] 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 […]

    Pingback by Decision Time « Life with MS & EDS — January 6, 2009 @ 10:04 pm


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