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thnkpos · 07-26-2005, 04:37 PM

hi,
i will be starting avonex very soon, and need open and caring feedback,

i read the thread, do u ever get used to injecting,

i'll take a thousand needle sticks, before one stick with unknown

side effects, im so afraid of the side effects and not the needle stick (anyone with me on this?)

can any/all avonex users give me some advise/stories? are most of the side

effects manageable? i know everyone is different, but input helps, (calm the

nerves for a short time anyway)

how long after do your effects hit? how long does it last? are your

side effects so frustrating enough to want to quit?

is aleve better then say tylenol or advil? what works for you?

and did you have side effects first shot?

anyone start it for sensory ms symptoms?

good and bad stories wanted.....

thank you so much for your input....... greatly appreciated
p.s. i hope im the "one" in a trillion that after all this worrying wont have any side effects.........lol (fingers crossed)
take care, thanks

racefan8 · 07-26-2005, 08:50 PM

There have been many posts on what some do to ease the side effects. I haven't found the trick that will work for me yet. Some weeks nothing, and some weeks, MACK TRUCK AND BASEBALL BAT THERAPY!! Yes, I did just take my shot today around 5:45pm or so and about an hour ago, the Mack Truck driver came and beat me with a baseball bat!! I drank water all day long, took 2 800mg advil, and here I am, looking for support myself! I get through the side effects now, knowing that in the long run it will be worth it. That's what I keep telling myself anyway. The weeks when everything is good keeps me going as well. I have turned it into a game with myself. Wonder what's going to happen this week??? Yes, it is kinda silly, but it keeps me taking the meds. I have not encountered side effects so bad that I want to stop taking Avonex. But you can bet all the money in your bank that I will be on the phone first thing in the morning with my support specialist at Avonex!! I hope you get the info you are looking for. KelliD <---

is also on Avonex and is the greatest "pick me up" on these boards. I go back and read her response to one of my posts a while back very often. Hopefully she will stop by here and unload all of her spirit and knowledge for you!! Keep smiling!!

purple2067 · 07-26-2005, 10:35 PM

I was on Avonex for a while and I did get very bad flu-like side effects. I used to get really really achey and extremely tired (moreso than usual) and sometimes I could not get out of bed. We eventually realized that it wasn't working too well for me, and my neurologist switched me to Rebif. I have much fewer side effects. Most of the time I don't even have to take any pain relievers. It is different for everybody. Some people have no side effects, some people are like me and get bad ones. The only way to find out is to try it and see. I recommend that you choose a day of the week to inject when you know you are going to be off the next day. I always injected on friday nights right before bed, because I knew I would be off on saturday and I hoped that doing it at bedtime would mean I could sleep through most of the side-effects. Nothing would ever make me stop using one of the injectables though. Even if I ever went go off of Rebif, I would make sure I was on something else. I would not go without treatment.

As for injecting, I got over that fear real quick! It is annoying, but not terribly painful. I got used to it. It makes me feel empowered. I am doing something to help myself, to take control of the disease.

president · 07-27-2005, 02:29 PM

I have been on avonex for 16 weeks. The 1st injection I had some minor flu like symptoms. There was only 1 other week that I had a bad flu reaction and was a time when I tried to inject in the side of my thigh. The Doctor thinks I got some in the blood stream. Other than that I have tolerated it very well.

The actual injection is a none event. I take 1 aleive and I ice the site prior to injecting. I can't feel anything at all. Maybe I have more numbness in the thigh area.

Good Luck!!

Sharon Grace · 07-27-2005, 09:54 PM

Hi! There are lots of folks out there on Avonex so you will get lots of good info hopefully!. I was on Avonex for three years before switching to Rebif. The side effects really do vary from person to person so you'll have to wait and see. I can share my experience but it may be quite different from what you will go through. I did have the flu-like symptoms, sometimes worse than others. I was told to take Advil (or Tylenol) one hour prior to injecting and another Advil (or Tylenol) two hours after the shot. Also, if you inject in the evening, you can sleep through some of it. Although sometimes I wake up in the middle of the night with terrible shivers anyway. Also, it helps to keep a journal of your injection sites written down so you can rotate sites as much as possible. Even with injecting just once a week ( I do my Rebif three times a week) you do build up a lot of scar tissue so keep moving it around. Hope this helps and best of luck to you! Sharon Grace

JulieDe · 07-28-2005, 01:45 PM

I've been on Avonex since Oct of last yr. I've had a hard time managing my side effects but I've been taking 2 Voltaren (script from doc) about an hour before injecting. I inject Sat night. Last weekend, I woke up freezing and my bedclothes were soaked. If this is the worst they are going to be, I'll take 'em. I remember my first time. Symptoms were about the same but I was much more sore on Sunday. Just achy, but that went away as the day wore on.
btw- I am the person who posted about getting used to injecting. It is just still so surreal for me to give myself a shot. I don't have anyone else and truthfully, I would rather do it.
I just hope when I go for my follow up MRI next month that nothing has changed in the past year.
My advice- just try different things (advil, naproxen, etc) and see what works for you. The side effects are tolerable.

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