Side Effects longer than 24 hours

[MomtoMiracle]

Hi there,

Has anyone had side effects that lasted longer than the usual 24 hours while on Avonex?

I'm having debilitating fatigue for at least four days after the shot. I just took my 3/4 dose and my doc is having me do the shots every other week. Is this somewhere in any realm of normal??

I'm really struggling with caring for my family and wondering if it's even worth it. Has anyone else gone through this and if so, did it go away?

[BigA]

When I first started, I was down for the whole weekend. But it did get better slowly.

[Special Kay]

When I first started on Avonex, I felt sick for most of the week -- worst the first day and then a little less each day and then it was time for the next shot!

It took some months (maybe a year?) before my side effects were confined to the first 24 hours and sometimes they linger a bit even now (6 years in), but they're nowhere near as bad as the first year.

[MomtoMiracle]

Update in case I scared anyone thinking of going on Avonex

Well, the doc isn't thinking that my prolonged issues are from the Avonex. He thinks it's a flare. Starting Solu-Medrol later this week.

This may sound bizarre, but I'm trying to look on the positive side of this... if it's a flare (hopefully short term), then the medicine (likely long term) isn't causing the week-long misery.

[pinkimartini]

Ah...finally a post that speaks to me. I, too, have the same issue and was told that my body was still adjusting to Avonex. I was also told that once I went to a full dose - I would start building a tolerance for it. I call it my Avonex 'hangover.' I was never a big partier back in college but I certainly feel like I'm making up for it. I do my injection on Thursday night but have zero energy the entire weekend. I tried going back to doing yoga but I don't even have the drive to do it.

[BigA]

Yes, that is one of the only "positive" things doctors will say because there is some data behind it - but it does not make it true for every individual.

I did not get used to it in a few months. It took a few years, so I may be the extreme example, but I did stick with it and am no longer afraid of my shots.

Also, I do morning shots, so you can try something different than the nurses recommend - they haven't tried it, nor has your doctor. Also, depending on your metabolism, you will take longer or shorter than others. Experiement, but if you stick with it, it will get better eventually.

[saturngirl]

When I first started it took about 48 hours for me to feel better.. but still not good. I was very fatigued until it was almost time for the next injection. It took about 4 months for my body to adapt.. then it was only 24 hours.. now, after 18 months, I'm down to about 12 hours and just tired the next day.

Try some of the tricks you will find on this site... taking it out of the fridge all day, cocktail of pills, drink lots of water on injection day, etc. They work!

Also, I have read that if you are in the middle of a flare up when you start treatment, you will feel even worse before you feel better. My symptoms got a lot worse when I started Avonex, then went away all together and my body adapted. It was strange.. i just woke up one day with minimal symptoms.

Good luck and hope you are able to find your mojo with this whole injecting thing soon!

[Spydre]

When I was on Avonex, I would be down for 3 - 4 days with side effects. The nurse line told me the side effects should have gone away after about 12 weeks, but they didn't. They assumed it was because of my fibromyalgia that it didn't happen, but I never knew why. Finally ended up going off of it a year in because the side effects kept me in bed so much.

[Tracelyn]

I used to have the "hangover" for days after my shot. However, as time went on, I pretty much only deal with it for 24 hours.

Typically these days within the first 8 to 10 hours after the shot I find myself waking up chilled to the bone and hurting like I had been hit by a MAC truck, but once I take more Aleve and get back into bed and cuddle under the blankets like a Eskimo after another 4 or 5 hours of sleep I am great.

One important thing to remember is to keep yourself hydrated. I typically start the afternoon before my shot by drinking a lot of water.. and then follow up the next day.

[pinkimartini]

I was reading the leaflet inside the Avonex box and there is a portion where it says that is doses over a certain time and the peak dose is withing 48 hours. It makes sense since I get the worst side effects around that time and generally at the very early hour of 4am. I wasn't working when I was diagnosed back in March so I've had pretty much spring/summer to adjust but so far nothing.

I did have to do a 3 day solumedrol this week and was told to just go my normal injection tomorrow. Still, I hate that zombiefied/hangover feeling. My neuro reduced me to the 2/3 dose since the other pretty much put me out. I know at some point I will have to go to a full injection *sigh*

[Kenmore]

Hi there,

Has anyone had side effects that lasted longer than the usual 24 hours while on Avonex?

I'm having debilitating fatigue for at least four days after the shot. I just took my 3/4 dose and my doc is having me do the shots every other week. Is this somewhere in any realm of normal??

I'm really struggling with caring for my family and wondering if it's even worth it. Has anyone else gone through this and if so, did it go away?

It isn't abnormal. But make sure you drink a ton of purified water (10-12 cups) and take 2 ibuprophen every six hours for at least a day. That should help a lot. I have hardly any side effects; mostly just a slight headache.