Clinical effectiveness

A board to discuss the Multiple Sclerosis modifying drug Betaseron

Postby amelia » Fri Dec 02, 2005 8:44 am

That is an interesting subject. Harry, this guy's DR told him that Betaseron had NOTHING to do with his liver profile going bad. He called him an alcholic because he drank 1 or 2 beers once or twice a week! He said the alcohol was all of his troubles. Funny though that once he quit the Betaseron, his liver profile went back to normal. And yes, he still has a beer every once in a while. This DR is a MS SPECIALIST! That is why I push people to be comfortable with their DR and do research on their own. Our friend's liver profile was going bad for over a year before he pulled him from the treatment. I do not know if they ever tested for the anitbodies at all. It's a shame, because that testing if help for others down the line. Now I ain't knocking Betaseron, but like everything else out there, it is not the treatment for everybody. Copaxon works for Gary, we will try Tysabri, when available. As far the MRI on our friend, his brain is "like a large spider web". He is somewhat disabled; on a walker and motorized wheelchair. Gary is close in disability to him but a little better in most ways. Gary's MRI showed 5 leasions on the brain! We are having the spine done after the first of the year. I'm sure it will show much more there. That is where most of his attacks have been.
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Amelia I totally agree with you about MS therapies.

Postby TheTysabriBull » Fri Dec 02, 2005 8:50 am

If a therapy or med is working for that patient it's all well and good. Too bad way too many of us veterans can't get that satisfaction. I am in a well connected and informed group of MSers who will go back on Tysabri as soon as it returns. Like you said, our choice and that's what it's all about.

Regards
21+ year Veteran MSer, 10 Year ABCR junkie, and one lucky guy who is experiencing the magical wonders of Tysabri for MS. I maybe totally blind in one eye but, I can sure see straighter out of the other.
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Postby HarryZ » Fri Dec 02, 2005 9:35 am

Amelia,

Despite the FDA and Health Canada mandating that interferon users be tested often for NABs and liver problems, we continue to hear stories about docs who don't give their MS patients the time of day and follow them properly! And blaming your friend's liver problems on alcohol is shameful in view of the fact he had been using Betaseron for a couple of years and felt so lousy.

The more I read about the CRABs and how hit and miss they are for MS patients, the less I feel they do much if anything. You often wonder if the absence of any attacks while the patient is using one of these drugs is nothing but the natural behavior of the disease.

Harry
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Postby amelia » Fri Dec 02, 2005 1:26 pm

I totally agree with the fact of wondering if the drugs work or not. So many well meaning people say I heard this worked or that, you know, really wierd stuff and treatments. We know that more than likely the person's disease just went into remission on its own. But you are damned if you use them and may be damned if you don't. No one really knows. But people w/ MS and those taking care of and watching MS can better tell researchers what is really going on. Too bad they usually don't ask us.
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Postby Caralea » Thu Oct 22, 2009 12:48 pm

Within a two years of starting beta seron (I had been doing fairly well with basically no drugs for about 15 years, I had the episode from hell.
In a nut shell, it could have left me wheelchair bound or worse.

Now a year and a half after that one, I've got another episode. Worse than the ones I used to have but not as bad as the one last year.

That's my experience of beta seron...my neurologist wants me to do Tysabri which I am not comfortable with and the other guy in his office just says..."well you never know...with out the beta seron you could be doing much worse!" :roll: yeah...that's the thing about this disease...nobody can ever know....thanks doc.

I kept taking it because I didn't know what to do...change is scary with this disease. i am appreciating all of the great info about new and alternative options that I'm finding on this site and may take some info to my doc when he gets back into town to see what else he will help me do.
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Postby thornyrose76 » Fri Jan 29, 2010 1:27 pm

In 2000, at 24 I was put on Betaseron. Over the next five years I continued to deteriorate. Finally I stopped taking it in '05 bc as the neuro said when Ipressed her for an opinion on the matter "Well, it isn't doing anything." 2 years ago a nurse at the MS clinic said to me when I told her why I wasn't taking anything: " The injection drugs weren't quite as effective as we initially first thought." So not only did it not work for me but it didn't work for a few other people as well. Be forewarned. :cry:
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