Erica Kane
11-02-2006, 07:05 PM
First, let me say, I've been on interferons for more than 10 years, jeez, probably close to 15 now. First Betaseron, then Avonex in a study, then Avonex ever since it's approval.
That said, I hate Avonex. I really do. I've been on it forever, and I still get very, very sick from it every week. I lose 2 whole days from that stupid shot. My doctor (who developed Avonex, by the way) always swore it was going to get better with time - but it hasn't.
I vomit, I get high fevers, chills, sweats, body aches that are so bad I can't even lay down without it hurting worse - all of it.
But this stuff is GOOD for me, right?:rolleyes:
Anyone else still sick with Avonex even after long-term use?
That said, I hate Avonex. I really do. I've been on it forever, and I still get very, very sick from it every week. I lose 2 whole days from that stupid shot. My doctor (who developed Avonex, by the way) always swore it was going to get better with time - but it hasn't.
I vomit, I get high fevers, chills, sweats, body aches that are so bad I can't even lay down without it hurting worse - all of it.
But this stuff is GOOD for me, right?:rolleyes:
Anyone else still sick with Avonex even after long-term use?
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AlabamaFan
11-02-2006, 08:23 PM
Erica Kane, Why did your doctor change you to Avonex. Did you have the side affects from the Betaseron, too? I am new to MS and started taking Betaseron about 4months ago. So far so good!! I hope I don't have to change my meds because I don't think I could handle the longer needle.
weeble99
11-02-2006, 09:59 PM
I started on Avonex when I was diagnosed in 1999.I stopped using Avonex in July of 2004.The fatigue was getting me down more and more.My depression was really bothering me to where I was scaring myself with the thoughts I was having.I am not taking any of the CRAB drugs and feel a lot better.Not taking any of these drugs may come back to bite me later,but that's my choice.I know
others who tolerate Avonex fine.There may be some other things you could use in addition to Avonex to help the side effects.Taking drugs for side effects of one drug and on and on.KEEP HOPE ALIVE!One day there will be something to stop this .
may peace be with you
Ken
others who tolerate Avonex fine.There may be some other things you could use in addition to Avonex to help the side effects.Taking drugs for side effects of one drug and on and on.KEEP HOPE ALIVE!One day there will be something to stop this .
may peace be with you
Ken
LaLady
11-02-2006, 10:08 PM
Actually I love it. I take my Advil before and after and have virtually no symptoms except needing an afternoon nap (NO problem!).
A year ago I had double vision, horrible headaches, was in a wheelchair, vertigo, slept 20 hours a day and was SERIOUSLY depressed. Now I have almost no symptoms except some balance issues.
Wonderful trade.
A year ago I had double vision, horrible headaches, was in a wheelchair, vertigo, slept 20 hours a day and was SERIOUSLY depressed. Now I have almost no symptoms except some balance issues.
Wonderful trade.
Erica Kane
11-03-2006, 11:20 AM
Thanks for the replies guys. I had the same side effects with Betaseron, so Avonex was the better choice, because at least I only had to deal with the side effects once a week.
I think it's helping my MS, which is the good part, but I really get nervous every week before the shot. I just know what's going to happen - that I'm going to be terribly sick in a few hours - and that's tough mentally.
All my bloodwork comes back clean, so the Avonex isn't affecting me adversely that way - just the worst flu imaginable every week - definitely better than not being able to walk - but still, not fun. I guess after all this time, there's no chance I'll ever "get used to" Avonex, so I'm sort of stuck with it.
I've tried every possible drug to combat the side effects too. Tylenol, Excedrin, Advil, Aleve, Prednisone and the list goes on. Nothing helps except sweet time. :)
I think it's helping my MS, which is the good part, but I really get nervous every week before the shot. I just know what's going to happen - that I'm going to be terribly sick in a few hours - and that's tough mentally.
All my bloodwork comes back clean, so the Avonex isn't affecting me adversely that way - just the worst flu imaginable every week - definitely better than not being able to walk - but still, not fun. I guess after all this time, there's no chance I'll ever "get used to" Avonex, so I'm sort of stuck with it.
I've tried every possible drug to combat the side effects too. Tylenol, Excedrin, Advil, Aleve, Prednisone and the list goes on. Nothing helps except sweet time. :)
Lisa_P
11-04-2006, 11:16 AM
I was only on Avonex for about 15 months, but I got off of it by choice -- a) because my insurance ran out, but mostly because b) I felt I was losing such a large percentage of my LIFE to the damn stuff! Like you, I had the flu every week and was just plain sick of being sick. I also had better luck with the powdered version you mixed yourself. So. I've been untreated for just over 2 years (well, for the last year I've been on Amantadine for the fatigue--helps sometimes, but not 100% anymore. Now we're talking about Provigil)) and am about to start Copaxone. Yes, it's a daily shot, but the chance for severe side effects like those I had before are ZERO, so... AND the needle is smaller and thinner and there is an auto-injector thingie so *I* don't have to being doing it to myself like before (I developed a bit of a phobia about needles after Avonex) I'm looking forward to it.
Erica Kane
11-04-2006, 02:43 PM
I was only on Avonex for about 15 months, but I got off of it by choice -- a) because my insurance ran out, but mostly because b) I felt I was losing such a large percentage of my LIFE to the damn stuff! Like you, I had the flu every week and was just plain sick of being sick. I also had better luck with the powdered version you mixed yourself. So. I've been untreated for just over 2 years (well, for the last year I've been on Amantadine for the fatigue--helps sometimes, but not 100% anymore. Now we're talking about Provigil)) and am about to start Copaxone. Yes, it's a daily shot, but the chance for severe side effects like those I had before are ZERO, so... AND the needle is smaller and thinner and there is an auto-injector thingie so *I* don't have to being doing it to myself like before (I developed a bit of a phobia about needles after Avonex) I'm looking forward to it.
Good luck with the Copaxone. I have a friend who's been on it for several years after giving up on Avonex. She still can't self-inject, so she goes to a nurse for her shots, but she's doing quite well on it.:)
Good luck with the Copaxone. I have a friend who's been on it for several years after giving up on Avonex. She still can't self-inject, so she goes to a nurse for her shots, but she's doing quite well on it.:)
maggie333
11-05-2006, 06:18 PM
I had th same side effects from Avonex. Finally had to quit. Lost 2 days to being sick and another dreading the shot. I switched to Copaxone, reluctanly, and have had no problems or side effects. Give something new a try and be strong
Erica Kane
11-06-2006, 08:46 AM
I had th same side effects from Avonex. Finally had to quit. Lost 2 days to being sick and another dreading the shot. I switched to Copaxone, reluctanly, and have had no problems or side effects. Give something new a try and be strong
I would love to give Copaxone a try after reading this. Next appt. I'm going to ask about it. Thanks. :)
I would love to give Copaxone a try after reading this. Next appt. I'm going to ask about it. Thanks. :)
PghGuy00
11-06-2006, 01:28 PM
Just started my 6th month on Avonex. Every week is so unpredictable as to whether or not I'll be ill from it, I do not plan any special activities for the following day or two. Two weeks ago I had absolutely no side-effects. I thought finally, finally I'm over them. Well, it's now day #2 since I took my last shot and I'm just getting over the aches, joint cramps, chills. GRRRRRRRRRRRR.
Natatude
11-06-2006, 08:01 PM
i hated it too! i was on it for a year,, i had a full time job in my inlaws restaurant and pizza shop,, the stupid avonex made me bed ridden for damn near 3 days,, so they gave me weekends off, i took my shot on fridays and was in bed till monday morning,, everytime i had to use the bathroom my hubby and daughter had to pretty much carry me because i couldn't get up and walk myself,, i got a bad fever and had huge headaches and muscle tightness and couldn't move.
Lisa_P
11-07-2006, 07:01 PM
Yep, that sounds about right. Were your chills so deep you could barely move?