It reminds of the menu at a Holiday Inn

Mike & I attended a dinner/lecture sponsored by Betaseron on Thursday evening. We've only been to one other of these drug-company sponsored events, one last fall that had been sponsored by Avonex. The amount of whining/complaining/totally irrelevant questions being asked at the end of the program, during the supposed Q & A session, turned me off to whole the idea of these programs. It was bordering on soap-opera-drama. But I digress. We decided to attend the one on Thursday because it was being sponsored by the drug I'm actually taking, and we thought we might actually get something out of it. Another crappy chicken dinner, for starters. :) I was underwhelmed by the speaker, though I had high hopes for him, a doctor from Wake Forest. He gave a presentation on the most basic aspects of MS, things I had learned within the first 24 hours of being diagnosed. Lots of boring slides with pie charts and bar graphs and tables, oh my! But I did learn one interesting and important thing. They are currently doing trials of Betaseron at a double dose level, and that is working even better than the standard dose. In fact, since the double dose is well-tolerated, this particular doctor was already prescribing some of his patients the double-dose level of Beta, which apparently any doctor could do right now. You basically just keep titrating up like you do when first start Beta. Since I have officially been at a full dose of Beta for a week now, and I haven't had a single flu-like symptom, pain, or any other problem, this sounds really promising to me. If I could just keep titrating up, knowing that it's giving me even more effectiveness, I'd just keep going! The doctor said that Berlex is designing a program where they will pay for the second dose entirely, at least until the trials are over and they get final FDA approval for the double-dose administration. At that point, I guess all Beta patients would be prescribed the double dose strength, but I'm not sure about that. Anyways, the program would help patients pay for the double dose until that time. Sounds pretty good to me. I'm content with what I'm on right now, but if that program is up and running by December, when I go back to Dr. Specialist for a check-up, I'm going to ask about it.

Comments

[Jessica]

I'm just catching up on checking out other's blogs - and I love your new color scheme!

:)

Thanks for sharing the info on the seminar. I knew about the trials on double-dose, but I didn't know that Berlex might be paying for us to get on it until it's approved! I don't know if I'd do that until it is approved, although I'm confident in the mechanics.

We shall see!

[mdmhvonpa]

"The amount of whining/complaining/totally irrelevant questions being asked at the end of the program, during the supposed Q & A session, turned me off to whole the idea of these programs."

Annoying, eh? One of the biggest reasons I dropped out of the support group. I just didn't have the will power to sit through an hour of that.

[MossManor]

I have been to a few Avonex sponsored seminars, and found most of the questions to be pretty banal.

But every now and then there is a bright spark and I actually learn something new!

So I guess I will continue to attend.

Kind of like panning for gold.....