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Disaboom » Health » Multiple Sclerosis » new in town,not to the MonSter

new in town,not to the MonSter

Last post Tue, Apr 29 2008 1:24 PM by Daniel502. 5 replies.


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  • charlie99 charlie99
    Posts: 2
    • permalink new in town,not to the MonSter

    • Posted: Wed, Apr 09 2008 5:37 PM

    • Hey guy's I'm real happy to find you,got a question that I'm hoping one of you can empathize with.I'm 52 and dx'd att 37 and for  14 of those 15 years I've taken beta seron for 3 yrs then copaxone for the past 11,just recently thanks to medicare part D I've had to give it up and my question to the board is have any of you gone long term,or short,then give it up and if so to what reaction's.Look foward  to your  reply's, thanks and God bless


    • Filed under: Medication
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  • iaminletgal iaminletgal
    Posts: 1
    • permalink Re: new in town,not to the MonSter

    • Posted: Wed, Apr 09 2008 7:38 PM

    • Hi Charlie, I'm sorry to hear you had to give up on your injections because of Medicare. Thats AWFUL! No one in our country should have to go without meds we need or medical treatments. I also have MS, 55 yrs. old and am on my last hope . Been on Betaserone for about 5-6 months. Have lots of site reactions and dont feel well taking it. Already went through Copaxone, Avonex, and Rebif. Didnt feel good on any of them after taking for 6 months to a year. Cant you write to company that makes drug and get on a patient assistance program?  I also wonder what will happen to me once I have to go off injections. Going to a Tysabi seminar next week to find out more about that drug but it kind of scares me to think of the side effects people have had with that. Makes me wonder if we are really better off taking injections with all the side effects??????? Good luck hun, Becky

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  • eryn eryn
    Posts: 83
    • permalink Re: new in town,not to the MonSter

    • Posted: Sat, Apr 12 2008 10:31 PM

    • Very difficult to answer this as we all know everyone's body will react differently to both starting the drug and going off of it. I have heard good and bad all along the boards on this subject. For me personally, I started on Rebif during the first two years of my dx. Biggest problem was liver enymes were always going up. I decided to ween myself off of it. I stopped the Rebif in 2002 and haven't had a major flare until right now. I have RRMS. I am now taking Copaxone. I hope you fight for funding somehow to get back on something soon. 


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  • KaraSwims KaraSwims
    Posts: 1,830
    • permalink Re: new in town,not to the MonSter

    • Posted: Sat, Apr 12 2008 11:20 PM

    • Hi Charlie-Just wanted to drop in and say hi and welcome to Disaboom! So glad you've found some people to give some feedback-hope to see you around! If you need anything, don't be afraid to ask. We're a friendly bunch! 


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  • charlie99 charlie99
    Posts: 2
    • permalink Re: new in town,not to the MonSter

    • Posted: Wed, Apr 16 2008 1:59 AM

    • Hi Becky thank's for the concern I think that I just needed to vent and know that someone was listening,thank's for the ear,as for my plight I think that I'll be Ok with it, it's in the Lord's hand now,where better to be. It's not like I didn't give technology a fair shake with 15 years of ABCs,7 years of plasma pheresis(plasma exchange) all the time hating the feeling of being a "cash cow" for the big boy's but the worst part is not being able to answer a simple question "is it working" damn I: hate the answer "the only way I'd know is if I stopped taking it" and that seemed too daring a move to entertain but now push has moved to shove and I'll have to face the fact's it hasn't worked for me so I'll take this as a good thing,heck at least I save 5000,00 in co payments.Talk soon

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

       

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  • Daniel502 Daniel502
    Posts: 431
    • permalink Re: new in town,not to the MonSter

    • Posted: Tue, Apr 29 2008 1:24 PM

    • I am on Rebif right now (my first treatment) and it seems to be working well. I have only had one flair up and it seems to have subsided now. I do get the injection site reactions, but they aren't too bad. It sucks that the only way to measure efficiency of one of the MS drugs is to monitor how many flare ups come and go. I have heard good things about Tsyabri, but am also afraid of some of the severe side effects that can accompany the treatment. I would also be concerned with giving up treatment all-together for fear of increased symptoms.


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