Lisa_P
10-27-2006, 10:56 AM
I was on Avonex about a year (plus a few months), and now I've been off medication for just over two years... (I had to get off that stuff because the side effects were so debilitating and happened virutally every time that I figured I was losing half my life to self-inflicted flu and my body just wasn't getting used it it! But I wanted to live ALL the days of the week for as long as I could, so... I got off that med!! I've been on Amantadine for about a year to treat the fatigue but since I've had another BAD exacerbation this year, my doc and I decided it was time to try another MS med.) Now I'm trying to get into the Copaxone NORD assistance program (I lost my insurance about the time I quit the Avonex-- which was really a main factor in stopping taking it though Biogen also has a company program for assistance.)
What are your thoughts? Is this a good move? I had rationalized dropping Avonex with the thought that "if this is as bad as it gets, why go though all those side effects every week?" But it has gotten worse. To the point that I don't work anymore, and because of my vision I rarely read a book, I avoid driving whenever possible... I'm even trying to get on social security disability... But I worry that because Copaxone is not an interferon that it may not do much. Of course that is WHY I chose it-- no bad flu-like symptoms...
What are your thoughts? Is this a good move? I had rationalized dropping Avonex with the thought that "if this is as bad as it gets, why go though all those side effects every week?" But it has gotten worse. To the point that I don't work anymore, and because of my vision I rarely read a book, I avoid driving whenever possible... I'm even trying to get on social security disability... But I worry that because Copaxone is not an interferon that it may not do much. Of course that is WHY I chose it-- no bad flu-like symptoms...
Sponsor
Mickey32
10-27-2006, 12:46 PM
Hi Lisa. I used to be on Avonex, but switched to Copaxone a couple of years ago. I think it's the best decision I have made so far. Like you, I was having terrible side effects from the Avonex including depression, chest pains, flu like symptoms... While I was on Avonex I was also participating in the study for Tsyabri. After doing a lot of thinking, and after many visits to my dr, I decided to stop the study and the Avonex. I haven't had any problems with the Copaxone, except for maybe some site reactions. My last MRI was stable. So, I think Copaxone is a pretty good choice. I hope it works well for you.
Michelle
Michelle
newwoof
10-29-2006, 06:34 PM
Hi Lisa,
I am a 34 year old man. I have been on copaxone since August, this year. I had a couple rough days when I started takiing it.I stopped for 3-4 days and then started again. I don't think it is causing more than site reactions (sometimes). I like it for the ease of the routine. Everyday don't forget:) I myself don't work (can't). I just took my pension...oh well. 1st mri 8 lesions on the brain, 23 on the spine, last mri they stopped counting. A will post as I go and give copaxone updates. I am going to give it a year and see how it goes.
I hope it gets easier and my thoughts are with you.
woof
I am a 34 year old man. I have been on copaxone since August, this year. I had a couple rough days when I started takiing it.I stopped for 3-4 days and then started again. I don't think it is causing more than site reactions (sometimes). I like it for the ease of the routine. Everyday don't forget:) I myself don't work (can't). I just took my pension...oh well. 1st mri 8 lesions on the brain, 23 on the spine, last mri they stopped counting. A will post as I go and give copaxone updates. I am going to give it a year and see how it goes.
I hope it gets easier and my thoughts are with you.
woof
Lisa_P
10-30-2006, 10:20 AM
Thanks guys! I am looking forward to starting on it as soon as NORD comes through (can't afford it otherwise). I developed a bit of a phobia about needles when I was on Avonex so I'm glad Copaxone has the auto-injector!
ITSABOUTTIME
11-02-2006, 10:22 AM
I Was On Avonex Last Year For About 4 Months. I Was So Very Sick From It. My White Blood Count Also Was Very Low. I Quit Avonex And Started Copaxone About 5 Months Ago. I Feel Great. The Only Side Effect Is The Injection Site Swelling, & Itching. Does Anyone Have Any Advice On Injecting???. I Haven't Had An Mri Since Jan 06. I Will Be Curious To See If There Are Anymore Lesions. But So Far So Good.
Good Luck.
Good Luck.
MSNik
11-02-2006, 10:27 AM
My advice, which seems to be working, is ice it for a minute or two before the injection, and then another minute or two afterwards. I keep an ice pack in the freezer for this. I just hold it on the skin before and after. I have noticed that ice, more than heat, seems to work for me.
Also, there is a gel called Arnica- its a homeopathic gel (much like Aloe Vera) which is used for bruising and swelling, available at all healthfood stores- use it to massage the site afterwards, it feels wonderful and helps with red marks, itching, etc. I am on Rebif, and on some days use the autoinjector, others just the syringe...this helps quite a bit with both!
Good luck!
Also, there is a gel called Arnica- its a homeopathic gel (much like Aloe Vera) which is used for bruising and swelling, available at all healthfood stores- use it to massage the site afterwards, it feels wonderful and helps with red marks, itching, etc. I am on Rebif, and on some days use the autoinjector, others just the syringe...this helps quite a bit with both!
Good luck!
maggie333
11-05-2006, 12:24 PM
Lisa, I too tried Avonex for 6 months. Side effects never passed and I was losing 2 days a week to this. That and one day dreading the shot. I stopped and then a relapse forced my to consider Copaxone. I was fearful at first but went ahead anyway. No side effects. What a blessing. No relapses either. Go for it, hopefully it will work for you too.
Lisa_P
11-05-2006, 01:56 PM
Thanks so much -- that's encouraging. :)
maggie333
11-05-2006, 02:01 PM
Lisa, one more thing, get the autoinject if you can. Much easier, don't have think about it at all. Watch not to get a muscle if you can, you will only miss once, LOL.
Lisa_P
11-05-2006, 05:19 PM
They sent that to me before I am approved for the program (!!) and I saw their DVD about it, so I think the autoinject looks WONDERFUL!
I'll remember that about the muscle! :jester:
I'll remember that about the muscle! :jester: