It Worked! Hooray!
First: my deepest apologies to those of you who tortured yourself with my last post. I was truly a cranky-butt and taking it out on the Internet is no way to deal with that. I am sorry.
However, the folks who did leave comments were, as usual, tres insightful. Jen's suggestion that "planned crappiness" is superior to "unpredictable crappiness" gave me pause for thought. Obviously, NO crappiness would be the ideal but since we've got to feel crappy I'm with her: planning it is certainly better than having it show up at random, wreak havoc and then go away to some degree or another.
But I think I'd be less cranky about the Avonex-induced crappiness if it were more than 30% effective at reducing exacerbations and slowing the progression of the disease. (Check me out: rating the levels of crappiness. HA!) The sad fact is that, while it appears to be one of the better drugs on the market, it's no miracle drug. There really aren't any miracle drugs out there. Even Tysabri, which is one of the best drugs out there right now, carries risks and is only 60% effective. Yes, it's helped some people in some amazing ways but the fact of the matter is, it has not been studied for longer than two years. So while it can help, we really don't know what the longer term ramifications are. Plus, not everyone is able to take it, due to allergy or whatever.
The point is, I need to get into acceptance about the MS and just move forward and try not to get too resentful.
BUT the good news is, I think I may have hit on a dosing schedule with the Avonex that could work for me! After taking the Avonex at noon yesterday, the side effects really started to hit at around 9:30ish pm. I went to bed around 10:30 and although I was starting to feel a headache and some body aches, I was able to get to sleep fairly quickly. When I awoke this morning at 7 I was groggy but ok after I got up and moving and had a cup of coffee.
Hopefully this will work for me for a while - I'm not sure why it's taken 8.5 months to figure this out but, well, there you have it. We'll try it again next Monday and see if it'll turn into a routine! I am in a more positive mood now, with the hope that I might have found a way to truly manage this stuff.
So after working for about 6 hours today, my boss IM'd me and told me I could log off early, since I'd worked so much yesterday. And with the extra time in the afternoon - before my hair appointment at 5:15 - I transplanted my new herbs into their bigger pots. They're now out on the deck looking lovely, if a bit small, at this point! I think I'm going to pick up one more planter thingy so I can plant some cilantro. That stuff goes all over the place so it would be good to have it slightly contained.
I also discovered, while out on the deck transplanting my little plants, that Rennie no longer has any fear of running down the flight of stairs... so I need to get a baby gate or something, before the start of summer, for the top of the stairs if I'm going to be spending any amount of time out there with her.




Comments
Glad that you've found a potential routine :)
Thanks for the reminder, I really need to get my hair cut!!!!!
Posted by: Rara | March 14, 2007 03:30 AM
yum cilantro! that will be delicious on burritos, which are my favorite food lately.
i'm glad you are feeling better today. i told you everything seems so much worse when you feel sick!
you are right that it's a lot to go through for 30%, but remember 30% could be the difference between walking slowly and needing a scooter. it could be the difference in needing a catheter or not. i know it's not fun to talk about, but i think it's important to make decisions based on reality. if i end up never having to face those situations, i'm going to feel like the avonex was worth it. if i end up having to face them anyway, i'm at least going to know that i did whatever i could to keep myself healthy. either way, drugs are the way to go in my mind. if not avonex (because if i am still feeling crappy from it in 8 months i will definitely consider switching), then another one. as you said: your body, your decision. but this is just how i think about it.
Posted by: jen | March 14, 2007 06:27 AM
you have no clue about tysabri its been around for ten years being 'studied' and it is the only effective ms drug for reversing the degenerative effects of ms. please do some reasearch before you write your rubbish! avonex has had repoted pml deaths attributed to it and is only at best 30% effective and has nasty side effects. get it right and dont make judgements based obn heresay and rumours!
Posted by: truth | March 15, 2007 02:01 AM
Ummm yeah, because you're the bastion of truth....
Yes, I am aware the drug has been around for some time. But just because a drug has been around for 10 years does NOT mean it has been tested in subjects taking it for 10 years in a row. My post could have been more clear on this point. However, according to the Tysabri medication guide, which I looked up before writing this post and which you can find here (PDF),
TYSABRI has not been studied for use longer than 2 years. Also, TYSABRI has not been studied in patients with chronic progressive MS, or in children. It is not known if patients older than 65 years have a different response to TYSABRI"
Further, Avonex has been associated with PML only when used with Tysabri; it has not - so far as I know - had reported cases of PML when used on its own. I found information from a Biogen Idec press release in this article which supports my assertion, if you care to read it.
If you had read more than even one entry on this blog you would know I'm keenly aware of the side effects associated with Avonex and that I'm relatively knowledgable about these matters in general. Not an expert, surely, but familiar enough to make choices for my own treatment. You're entitled to your opinion, of course, but if you're so sure you're right about these topics, why did you use a fake name and email address? Just wondering...
Posted by: Zee
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March 15, 2007 07:25 AM
Some people are just tossers I tell ya! Hope ur having a good day in PDX, sunny & slightly warm here in LDN, xx
Posted by: Rara | March 15, 2007 07:31 AM