I'M DONE!!!

[Luv2Worship]

I have been on Copaxone, Rebif, Ty & now Betaseron and I'm done!! Its is bad enough that this disease is slowly eating away at my life, I don't need drug side affects to do it even faster & make me feel like crap while doing it!

I know, I know, its supposed to slow the progression. Well, I'm willing to take that risk because, with the exception of Ty which is the only one that actually made me feel better but I can't afford the $100 infusion center co-pay, they have all brought my life to a stand still!

The last dose I took was on Monday & I have more energy, less headaches, less aches period! I see my nuero this week, I haven't told him yet. I want to be tested for the Baclefon pump. I'm still on Lyrica, Ampyra, soma & norco for pain & Ambien.

[Tomjadg]

I understand.
i did Rebif for 7 months with no improvement, and I have done 4 Ty infusions with no change. I am going to give it a year, but if no change, I will stop that too.

I am lucky that my insurance covers everything, and I suffer no side affects. Great positives, huh?

If Ty is helping you, I would look into aid with the co-payments.

[Thinkimjob]

You've done your time. Enjoy your freedom!
I'm too scared to try Tysabri, Beta made me feel hideous, and I'm not getting much fun out of Copaxone.
Why don't I stop? Don't know, really. Fear, probably. Although to be honest, I don't believe Copaxone is doing me much good at all, so it's hard to see how it could be any worse if I gave it away.

[tommylee]

I just dumped Avonex this year after 12 years.
I still take care of myself in general but no more treatments that diminish my quality of life.

So far so good. I feel about the same. I just don't have the flu every week for 18-48 hours.....That is a big improvement in my eyes.

Good luck. I am not sure if the treatment is not just as bad as MS in the first place?

Would you like a fever, a head ache and abdominal cramping to go with the rest of your MS symptoms?
Just give us all of your extra money and we can make you feel worse than ever!

[Coriander]

I hear you

I was on Avonex for 2 years and continued to slide and have flares. I knew the odds of it working were less than a coin flip but options are limited with this disease and I am willing to try just about anything at this point. My neurologist concluded it was not working to try a different approach.

I have been on copaxone now for 7 months. I hope for the best but my expectations are low. I hope to heal more and not flare so hard otherwise I might be with you and just quit altogether. Resign myself to my fate and do the best I can.

[bigfoot14]

My wife tried both Beta-seron & Copaxone (about 18 months each) and gave them up years ago as they did nothing for her but make her feel worse....

She had the CCSVI procedure 3 months ago and is doing well, and has started to cut down on her other meds

She is currently on : cymbalta (down to 60 from 120)
Ambien (down to one pill per night from two)
Valium (baclefon didn't work for her) down to 30 from 40
lyrica

Good luck with your decision

[FEFaith]

I tried Betaseron 2 yrs, Avonex 7 yrs. No side effects but not one benefit and still progressed. Finally neuro admitted they are no help, too. $10s of 1000s spent with only many financial downsides to show for it.

[Nancy M]

I am also on copaxone and took me 6 months to get over the horrendous side affects. Now on ampyra. Even with the copaxone I had 2 relapses 6 month apart. Not sure the injections even work but my neuro says they do. Ampyra has helped my walking speed but does nothing for the vice like feeling in my right forearm and right calf. Such a dilemma taking all the medications that screw with the brain and probably don't work. Go with your gut instinct and stop if you want to. I'll probably quiz my neor next time I see her about stopping the copaxone which I don't think is doing anything for me.

[ms man]

I have been on Copaxone, Rebif, Ty & now Betaseron and I'm done!! Its is bad enough that this disease is slowly eating away at my life, I don't need drug side affects to do it even faster & make me feel like crap while doing it!

I know, I know, its supposed to slow the progression. Well, I'm willing to take that risk because, with the exception of Ty which is the only one that actually made me feel better but I can't afford the $100 infusion center co-pay, they have all brought my life to a stand still!

The last dose I took was on Monday & I have more energy, less headaches, less aches period! I see my nuero this week, I haven't told him yet. I want to be tested for the Baclefon pump. I'm still on Lyrica, Ampyra, soma & norco for pain & Ambien.

I hear and understand what you're saying but you're too young to give up.Have you looked into Gilenya the oral meds?

[CrazyCatLady]

I hear and understand what you're saying but you're too young to give up.Have you looked into Gilenya the oral meds?

That is what I was going to say. I started Gilenya on Dec 14, 2010 and truely the only side effect I have had is stess from the pharmacy LOL! It seems to be a pain to get but once it is ironed out all is OK. It is so much better then the Betaseron for my quality of life. I love not getting those flu like symptoms!

[pillbox79]

Hello there -
My apologies for tacking a totally unrelated (kinda) response to this thread but the one I wanted is archived and not allowing responses.

I was curious the name of the doctor your wife visited in Chicago for the angio?

I am in Chicago and have wanted to look into this for myself.

going to drop my generic email addy here as it doesn't seem to show up on my profile:
** E-mail address removed per MSWorld guideline #2. Your e-mail address can put in your profile for all registered, logged-in members to see. Add your e-mail address by going to User CP / Edit Your Details. Scroll down to URL's / Favorite URL's. Don't forget to Save! **


Thanks and hope you and yours are still doing well!

J

My wife tried both Beta-seron & Copaxone (about 18 months each) and gave them up years ago as they did nothing for her but make her feel worse....

She had the CCSVI procedure 3 months ago and is doing well, and has started to cut down on her other meds

She is currently on : cymbalta (down to 60 from 120)
Ambien (down to one pill per night from two)
Valium (baclefon didn't work for her) down to 30 from 40
lyrica

Good luck with your decision

[KarenR]

Hello there -
My apologies for tacking a totally unrelated (kinda) response to this thread but the one I wanted is archived and not allowing responses.

I was curious the name of the doctor your wife visited in Chicago for the angio?

I am in Chicago and have wanted to look into this for myself.

going to drop my generic email addy here as it doesn't seem to show up on my profile:
** E-mail address removed per MSWorld guideline #2. Your e-mail address can put in your profile for all registered, logged-in members to see. Add your e-mail address by going to User CP / Edit Your Details. Scroll down to URL's / Favorite URL's. Don't forget to Save! **


Thanks and hope you and yours are still doing well!

J

Pillbox,
Welcome to MSWorld!
I've added your email address to your profile for you.
We don't allow e-mail addresses in the body of posts to prevent some of those less than scrupulous folks from mining our site for the purposes of spamming!
Be well,