Hello - I'm looking for some advice from those Avonex users out there. I just had my 3rd injection last night (Friday). Each time I have my injection I wake up about 6-7 hrs. later with the chills (have to put on sweats and cover w/ down comforter), then wake up about 2 hrs. later with a fever of about 102. Saturday and Sunday have been very unproductive because of the achiness, headache, nausea, and exhaustion.

Before each injection I take 3 advil and before I go to bed I take 2 tylenol. I also read to stay hydrated, so I work on drinking lots of water. I know the side effects to Avonex are flu like symptoms, but I wasn't anticipating being out of commission for most of the weekend.

Does anyone have any tips that might work, or how long has anyone else experienced side effects?

Looking for words of wisdom! I just got the job of my dreams and am trying to finish my masters. I have to find a way to make this work!

Thank you for your advice!
Corine

Corine, since no one has answered you as of yet, I figured Id try to help. Im on Rebif, which is the exact same drug as Avonex...and the symtoms- the flu like stuff is exactly the same, too...the biggest difference being I do my shot 3 times a week and its sub-cu, not in the muscle...but I know where you are coming from.

From experience, and Ive pased this on to many Avonex users who have thanked me...try Aleve. Aleve is a 12 hour over the counter medicine- lasts twice as long as Tylenol or Motrin and for some reason seems to work better on flu like symtoms. My advice is to take 1 pill 1/2 before the shot, and take another one about 4 hours later...eventually youll only have to take the first one..and sometime after that, you WILL adjust to this drug and not need to take anything....avonex seems to be alot worse then the others as far as how long it takes to get used to it....with Rebif, into month 4, the side effects stopped completetly. Now, at year 2, I can do my shot and walk out the door, like brushing my teeth! No side effects at all....and this will come, what you are describing is very much the typical Avonex side effect. We have one poster here who said it took her up to 7 months before the side effects stopped, but now she is doing well....hang in there, as long as it is doing what its supposed to do, preventing relapses- then its okay for you..try Aleve. Really, it works better!

Nikki

Hello,
I have been on Avonex since Feb of this year. It looks like you are doing all you can do.

Did you start with the full dose? Many doctors will have their patients start on a titrated dose. Maybe 1/4 dose the first week or two. 1/2 dose the next couple of weeks. 3/4 the next two weeks and then the full dose.

My doctor started me on 1/2 dose for the first two weeks and then the full dose. That was too fast for me so she backed my up and started to build back up again.

Titrating helps your body adjust and makes the side effects a little more manageable.

I still have a few side effects. Aching and chills mostly. But it is much better.

You should let your doctor know how rough things are right now and see if titrating is an option.

LA

Hello - I'm looking for some advice from those Avonex users out there. I just had my 3rd injection last night (Friday). Each time I have my injection I wake up about 6-7 hrs. later with the chills (have to put on sweats and cover w/ down comforter), then wake up about 2 hrs. later with a fever of about 102. Saturday and Sunday have been very unproductive because of the achiness, headache, nausea, and exhaustion.

Before each injection I take 3 advil and before I go to bed I take 2 tylenol. I also read to stay hydrated, so I work on drinking lots of water. I know the side effects to Avonex are flu like symptoms, but I wasn't anticipating being out of commission for most of the weekend.

Does anyone have any tips that might work, or how long has anyone else experienced side effects?

Looking for words of wisdom! I just got the job of my dreams and am trying to finish my masters. I have to find a way to make this work!

Thank you for your advice!
Corine

Hi Corine,
I use to take tylenol, and panadol. Nothing worked for me.
Nikki gave me the advice she just gave you. I also take 1 aleve 1/2 hr before my Avonex.
It honestly lasted the 12 hours as stated on the box. I can sleep through the night now. The odd ocassion i would wake in the morning feeling crap. Just popped another and that was it. My flu symptoms also lasted 6-7 months. They have pretty much gone. hang in there. you will get through this.
I'd also like to know if your on full dose too. i started 1/2 dose for my 1st month before going to full dose. I let my body adjust.

Thank you all for your advice. I believe my dr started me on a full dose. He never said anything about starting with 1/4 or 1/2 of a dose. I will try the aleve next week. If that doesn't make a difference I'll contact my dr. This process just seems very frustrating because while I'm going through the chills, fever and feeling lousy, I have the tingling (some of my original MS symptoms) in my legs, feet and hands. Hopefully time will work all this out!

Thank you again -

Corine

MOST of the people I have seen post about Avonex were started on a titrated schedual. Some people can take the full dose and do fine.

I am not sure if Aleve would do any better than Motrin or Advil because I can not take Aleve but maybe it will work for you.

Good luck!

Thank you all for your advice. I believe my dr started me on a full dose. He never said anything about starting with 1/4 or 1/2 of a dose. I will try the aleve next week. If that doesn't make a difference I'll contact my dr. This process just seems very frustrating because while I'm going through the chills, fever and feeling lousy, I have the tingling (some of my original MS symptoms) in my legs, feet and hands. Hopefully time will work all this out!

Thank you again -

Corine

Hello! I think I'm the one Nikki wrote about who took 7 months for the side effects from Avonex to go away. I inject on Fridays too; I used to be completely floored by it every Saturday, but it's so much better now. Now I have some fatigue, sometimes a headache, and sometimes a little achiness. It gets better by the hour.

I would try Aleve too; it didn't do much for me but it helped a lot of people. Motrin works better for me. I think the one thing I do that makes the biggest difference is staying hydrated. I drink a ton of Gatorade on Friday and I limit my caffeine intake, which is HUGE.

I started on the full dose, and I wonder if that's why I got sick for so long. Who knows? Just know that there is a light at the end of the tunnel!

I had the chills too, and for me that was the worst side effect of all. I would wake up in the middle of the night freezing, shaking so bad I thought I was seizing. My husband would hold me like a strait jacket, and that didn't even help. There were lots of nights like those where I'd try to walk to the bathroom and couldn't because my legs were shaking so bad. Then I'd wake up in the morning sore because of it. It is really a crummy way to feel. I began taking a Klonopin before bed to help me sleep through the night; sometimes it worked and sometimes it didn't.

I sympathize with you about those lousy days when you're sick from Avonex plus your MS is acting up. Those days are the worst. There were months when the treatment was worse than the disease for me, but now it's much better. I think I'd rather have a bad MS day than go back to that first month on Avonex! I did talk to my doctor when it came to a point where I felt the side effects should be going away, and they weren't. He advised me to give it more time. I'm glad I did now!

II had the chills too, and for me that was the worst side effect of all. I would wake up in the middle of the night freezing, shaking so bad I thought I was seizing. My husband would hold me like a strait jacket, and that didn't even help. There were lots of nights like those where I'd try to walk to the bathroom and couldn't because my legs were shaking so bad. Then I'd wake up in the morning sore because of it. It is really a crummy way to feel. I began taking a Klonopin before bed to help me sleep through the night; sometimes it worked and sometimes it didn't.

He advised me to give it more time. I'm glad I did now!

April... The exact same thing has happend to me in the past. I swear i had the same experiance. I thank the stars those days are over. :D
Well as long as I remember my Aleve.;)

For what its worth, I used to be as dependent as you guys on Aleve with my Rebif...and it DID Work, which is why I passed it on to so many people, but one day- I forgot it...and found out I didnt need it anymore.

Rebif must be slightly easier to adjust to, maybe because you do it 3 time a week as opposed to once a week, I dont know- but honestly, the side effects do stop entirely at some point and pre-injection meds will no longer be necessary at that time. You wil know when you stop having side effects, but from all of your posts, Id say the average time frame is more like 6-8 months, as opposed to Rebif, which is 3-5.

As long as its working for you, as long as the "big picture" is good- we get thru the bad to get to the better...right?;)

hugs to you all and happy healthy weekend.
Nikki

Thank you everyone for your replies. It's just good to hear that what I'm experiencing is not out of the norm. I will try all the tricks that you have all mentioned. I already had someone pick up some aleve for me. I haven't met with the nurse yet, maybe she will have some good ideas as well.

Thank you again, will keep you posted!

Corine