Clinical effectiveness

amelia · Posted: Fri Dec 02, 2005 9:44 am Post subject:

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.

TheTysabriBull · Getting to Know You... Joined: Aug 15, 2005 Posts: 18

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.

HarryZ · Posted: Fri Dec 02, 2005 10:35 am Post subject:

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

amelia · Posted: Fri Dec 02, 2005 2:26 pm Post subject:

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.