saturday side effects

by tinglyfeeling on February 7, 2009

whipped cloudsI’m not a morning person by design, and on weekends, sleeping in is expected. But since I started my MS treatment, Saturdays are extra slow around here because it’s my day to recover from the side effects from the Avonex shot I gave myself on Friday night.

For those of you who don’t know, Avonex side effects are most commonly described as “flu-like symptoms.” Aches and pains, fatigue, fever and chills, etc., usually associated with the flu, all expected to wear off after about 24 hours. So, like most Avonex users, I take my shot before going to bed and try to sleep off the side effects.

Some Saturdays are easier for me than others–it depends on what else has been going on. How tired I am in general, what I’ve been eating, what time of the month it is (I really think PMS makes it worse), or if I have a cold, am hung over, etc.

The last couple weekends weren’t so bad–I went for walks and worked up a sweat at yoga–but today my energy level is way low and I’m achy, like I’ve been worked over with a rolling pin. My skin is prickly, especially on the tops of my forearms and hands. I can’t make a solid fist with my left hand–which isn’t something I can totally blame on the side effects, but I think it’s worse today than it was yesterday. It’s often hard to tell the difference between side effects and my regular MS symptoms until Sunday, when the effects are supposed to have worn off.

So, right now, I’m hoping that I feel better tomorrow. It often happens that way, where it’s like the clouds of my Saturday side effects part for clear skies on Sunday. But, as much as I try to predict it, I can’t.

Anyone else out there on Avonex or know somoene who is? I think my side effects are pretty typical and I’ve heard they can go away completely over time, but I’d like to hear others’ experiences.

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  • http://beyonditall.net/ carla

    I havent started Avonex yet, but I know when/if I do, I will try to prepare as much as possible.

    Thank you for sharing your experience.

  • http://beyonditall.net carla

    I havent started Avonex yet, but I know when/if I do, I will try to prepare as much as possible.

    Thank you for sharing your experience.

  • http://www.tinglyfeeling.com/ tinglyfeeling

    I chose Avonex because it seems to be the least disruptive of the MS treatments. It’s just once a week and it doesn’t leave the surface welts that the other treatments do. Time will tell how well it works….

    Please let me know what treatment you decide to go with. I’m curious/anxious to hear more about your experiences in particular because we’re both recently diagnosed and 30-ish.

    Fun, eh? Heh.

  • http://www.tinglyfeeling.com/ tinglyfeeling

    I chose Avonex because it seems to be the least disruptive of the MS treatments. It’s just once a week and it doesn’t leave the surface welts that the other treatments do. Time will tell how well it works….

    Please let me know what treatment you decide to go with. I’m curious/anxious to hear more about your experiences in particular because we’re both recently diagnosed and 30-ish.

    Fun, eh? Heh.

  • http://kelleysmsblog.blogspot.com/ Kelley

    I have to agree that PMS makes MS symptoms worse, especially fatigue. I’m on Copaxone, so I don’t have the flu-like symptoms. But during PMS, I am extremely fatigued and have the “dropsies” pretty bad. I would love to find some research regarding PMS and MS symprtoms.

    Feel better!

    Peace,
    Kelley

  • http://kelleysmsblog.blogspot.com/ Kelley

    I have to agree that PMS makes MS symptoms worse, especially fatigue. I’m on Copaxone, so I don’t have the flu-like symptoms. But during PMS, I am extremely fatigued and have the “dropsies” pretty bad. I would love to find some research regarding PMS and MS symprtoms.

    Feel better!

    Peace,
    Kelley

  • http://www.melizzard.com/ Melizzard

    I took Avonex for years over 10 years what your feeling sounds typical. Make sure and take a couple of extra pain relievers before going to bed, that helps a lot. And it does get better over time.

    But also over time you just quit thinking about it so much. When your newly diagnosed you see everything through the lens of having MS but eventually as MS becomes less of a focus in your daily life and just something that resides in the background, all the little things like Avonex side effects seem smaller and Saturdays will no longer be about recovering from your shot but about doing the things that Saturdays always were.

    Oh lord that sounded condescending and that that’s not how I meant it. I hope your not taking it that way.. I’m typing this sitting here in the typical pandemonium that happens in a business family with two little kids running around on a weekend morning so I’m not being over careful but take that to heart… how utterly normal and chaotic your weekend mornings are going to be in the future.

  • http://www.melizzard.com Melizzard

    I took Avonex for years over 10 years what your feeling sounds typical. Make sure and take a couple of extra pain relievers before going to bed, that helps a lot. And it does get better over time.

    But also over time you just quit thinking about it so much. When your newly diagnosed you see everything through the lens of having MS but eventually as MS becomes less of a focus in your daily life and just something that resides in the background, all the little things like Avonex side effects seem smaller and Saturdays will no longer be about recovering from your shot but about doing the things that Saturdays always were.

    Oh lord that sounded condescending and that that’s not how I meant it. I hope your not taking it that way.. I’m typing this sitting here in the typical pandemonium that happens in a business family with two little kids running around on a weekend morning so I’m not being over careful but take that to heart… how utterly normal and chaotic your weekend mornings are going to be in the future.

  • http://www.tinglyfeeling.com/ tinglyfeeling

    melizzard — thanks for the thoughts. i didn’t take them as condescending at all, but rather, reassuring. it’s nice to hear from someone who’s been struggling with MS longer than i have that there might be a “normal” future to look forward to. i hope i’m able to maintain my current levels of pandemonium. heh. i think the uncertainty is the hardest part of this disease (so far). anyway, i appreciate you chiming in. thanks again.

    (why’d you stop the avonex treatment? what are you on now?)

  • http://www.tinglyfeeling.com/ tinglyfeeling

    melizzard — thanks for the thoughts. i didn’t take them as condescending at all, but rather, reassuring. it’s nice to hear from someone who’s been struggling with MS longer than i have that there might be a “normal” future to look forward to. i hope i’m able to maintain my current levels of pandemonium. heh. i think the uncertainty is the hardest part of this disease (so far). anyway, i appreciate you chiming in. thanks again.

    (why’d you stop the avonex treatment? what are you on now?)

  • http://www.tinglyfeeling.com/ms-drugs/vacations-all-i-ever-wanted/ vacation’s all i ever wanted

    [...] My new life with MS means travel brings up a sticky issue–what to do about my Avonex shot. I take it on Fridays, so whenever I go somewhere, which is usually over a weekend, I try to do it a day or two ahead of schedule so I don’t have to travel with the drug. I’m glad Avonex is flexible enough that I can adjust the dose schedule a day or two ahead or behind, but taking it early this week means that I’ll be traveling with side effects. [...]

  • Glor

    I have been on Avonex since April 07 and my flu like symptoms went away pretty much after a few months, but as time went on they came back and sometimes with a vengeance. I wonder if anyone out there has looked into natural cures that have truly worked for them over a period of time. Even with pain reliever’s I suffer like a dog for a matter of 2-4 hours and then again twenty four hours later.

  • Glor

    I have been on Avonex since April 07 and my flu like symptoms went away pretty much after a few months, but as time went on they came back and sometimes with a vengeance. I wonder if anyone out there has looked into natural cures that have truly worked for them over a period of time. Even with pain reliever’s I suffer like a dog for a matter of 2-4 hours and then again twenty four hours later.

  • http://www.tinglyfeeling.com/ tinglyfeeling

    Glor — The flu-like symptoms have gotten a lot better for me, actually, but it still depends on the week. I do experience a bit of pain the day after my shot, but a couple of Advil and taking it easy usually helps to alleviate that. I overdid it yesterday, though, so today I’m completely whupped. The only remedy is an early bedtime, I think.

    I think the jury’s still out on any MS remedy, natural or otherwise, right? Since everyone experiences different symptoms and reacts to treatments differently. No shortage of opinions & advice out there, though…. ;-)

    Keep in touch–I’d like to hear more about your experiences!

  • http://www.tinglyfeeling.com/ tinglyfeeling

    Glor — The flu-like symptoms have gotten a lot better for me, actually, but it still depends on the week. I do experience a bit of pain the day after my shot, but a couple of Advil and taking it easy usually helps to alleviate that. I overdid it yesterday, though, so today I’m completely whupped. The only remedy is an early bedtime, I think.

    I think the jury’s still out on any MS remedy, natural or otherwise, right? Since everyone experiences different symptoms and reacts to treatments differently. No shortage of opinions & advice out there, though…. ;-)

    Keep in touch–I’d like to hear more about your experiences!

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