Life with MS & EDS

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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10 Comments »

  1. Should I be sorry that I’m really enjoying your tour through the drug pitches? It’s kinda fun really.

    Hey, I’ve had MS for at least 9-15 years already, only diagnosed 3 years ago, and do not have any brain atrophy. Yes, another scary term, I know.

    Comment by Lisa Emrich — December 9, 2008 @ 11:29 pm

  2. Lisa, I’m glad you are enjoying the posts! It’s good to hear that you haven’t had any brain shrinkage even though you’ve have MS much longer than you’ve been taking anything for it. Hopefully these drugs will keep that from happening. What a scary thing to think about!

    Comment by mseds — December 10, 2008 @ 9:35 am

  3. I would NOT have told you to stop watching. I would have been supportive of watching with you. It’s not like avoiding hearing about the the shots is going to make it any easier or make it avoidable.

    I just wish I had been here to watch it with you…those marketing pitches are horrible.

    Comment by nothingknew — December 10, 2008 @ 9:35 pm

  4. […] 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, […]

    Pingback by Drug Evaluation #3 - Copaxone « Life with MS & EDS — December 29, 2008 @ 11:40 pm

  5. […] obvious that Rebif considers Avonex to be their main competition and that they are targeting people who may want to switch from Avonex […]

    Pingback by Drug Evaluation #4 – Rebif « Life with MS & EDS — January 5, 2009 @ 6:25 pm

  6. […] 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, […]

    Pingback by Decision Time « Life with MS & EDS — January 6, 2009 @ 9:52 pm

  7. I as you researched each of the treatment options and ultimately decided on Avonex. I guess its all about what you can tolerate: I am totally afraid of needles so the once per week injection was attractive; My doctor is tracking my liver and thyroid function as well as my blood cell count; and I can premedicate to deal with the flulike symptoms.

    I took my first injection on 3/20/09, and although it took awhile for me to get the courage to inject myself, it was not as bad as I envisioned. I did experience the flulike symptoms, but I chose not to premedicate so I could see if I would experience these symptoms.

    One important thing I learned from my first injection is I do not think I could tolerate an injection 3 – 7 times a week.

    Good luck with your therapy,
    LC168

    Comment by LC168 — March 27, 2009 @ 5:42 am

  8. Hey there! The once a week shot was appealing. A friend of mine uses Avonex. What have the flu-like symptoms been like for you? Do you just feel worn out and achy? I hope everything is going well for you.

    Comment by mseds — March 27, 2009 @ 1:56 pm

  9. Today was my second injection and my doctor prescribed Naproxen to deal with the flulike symptoms so I will have to let you know how well this medicine works.

    LC168

    Comment by LC168 — March 27, 2009 @ 5:40 pm

  10. I have been dianosed with MS for two years. I did almost no research and decided on Avonex when I heard one could self-medicate and it was only once a week. I did not want anyone else to have to give me the shot. The whole procedure takes me about 5 minutes. I have to admit I don’t let the Avonex warm up for any amount of time. I do nothing to prepare except wash my hands, take two IBProfin. I do the shot slowly and have never experienced any pain. I bled a little once. I tell you all this because I wanted to get on with the medication. While I admire all your research, I also was told it was easy to change medications if you and your doctor thought it best.

    I have been very fortunate. The avonex is working great. No new lesions since I started medication. No relapses. I really the wonderment of being lucky I guess. We do need to remember that MS is a progressive disease though. My balance has worsened and I use a cane now, primarily for balance.

    I am hoping all this went well for you and which ever medication you chose is working well. After reading all that stuff, I encourage you and all of us to remember we still have great lives and many opportunities. God bless and best regards, Bill

    Comment by Bill Klimback — April 6, 2009 @ 11:56 pm


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