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Old 08-18-2011, 11:14 AM #1
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Default What's been your experience on betaseron?

I've been on Copaxone since 2007. and am now switching to Betaseron, and from what I'm reading about side effects I think the cure is worse than the disease! I'm already taking three meds for clinical, chronic depression and I just can't imagine taking something that may make it worse. Right now I don't want to take any DMDs. Just the preparation of the medication sounds like a pain, and all the extra blood tests, and the worry and stress over my depression, I'm a nervous wreck and I haven't even started the med yet.

What's been your experience on betaseron?
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Old 08-18-2011, 11:27 AM #2
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Like you, I started out on Copaxone. When it didn't work for me I switched to Betaseron. It made me so sick I had to stop taking it. I was also getting new lesions showing up on my MRI's. I stopped the Beta and have been on LDN now for several years. It was the best thing for me. Some folks can tolerate the DMD's and seem to respond nicely to them. I was just one of the ones who didn't.
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Old 08-18-2011, 12:20 PM #3
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Betaseron didnt like my liver, but while I was on it, I was extremely impressed at the lack of side effects. Like my MS all my damage was silent.
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Old 08-18-2011, 12:28 PM #4
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I didn't do Beta but did Avonex and the side effects are pretty much the same....I couldn't take them..

I suppose you could try it, but get off of it when/if you feel your quality of life deterriate.
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Last edited by SallyC; 08-19-2011 at 12:09 PM. Reason: said could instead of couldn't
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Old 08-19-2011, 06:55 AM #5
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I was on Beta for eight years, and I can't deny that the side effects were nasty, but not all the time. I could go for a few weeks without the side effects bothering me after the first few months.

Then of course they came back if I didn't remember to take paracematol - or sometimes they just came back because they felt like it. They were really harsh and it often made me feel like I had walked under a truck - like having a really bad hangover every second day.

The good news was, that Beta pretty much stopped my MS in its tracks. I am using Tysabri now, I couldn't handle the side effects of Beta anymore and it was doing things to my system that I didn't want (liver).

I wish you all the best in whatever you choose - I think the power that is needed to stop this stupid disease means that no option is without risk.

Good luck in whatever you choose

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Old 08-19-2011, 05:59 PM #6
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hi Catch,
if you look at my siggie you will see how long I've been on betaseron. It worked for me and the only side effects were the flu like symptoms which, while lessening in frequency, continued. 2 tylenols took care of that.

I never had any really bad symptoms from betaseron and when I started it in 2000, it was with the full dose.

been off the beta since 28 June due to elevated LFT's but will probably go back on it or rebif after next neuro visit in September.

don't be afraid of it Catch. I know I'm an anomalie since I went from disability scale of 3.5 to 0 and no relapses in going on 11 years, but it may work well for you too
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Old 08-20-2011, 03:55 AM #7
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I was on Beta for about 5 years. Just now changed to Copaxone. I did well on Beta. Tapered up when I first started. It really slowed down my exacerbations. Never did affect my liver. I was lucky. But the last few months I've developed new lesions. Guess it has just run its course with me. So my neuro switched me to the Copax. Hope you have good luck.
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