DRAFT TODAY, POST TOMORROW: Some posts may be in draft status until I (aka procrastinator extraordinaire) get around to posting them.

Thursday, March 19, 2009

20s/30s Squad 3/12/09

Tonight's squad meeting was at the new Chapter location. Dr. Hendin talked about trials and explained the phases very well. Phase 1 is animal trials, Phase 2 is healthy human trials for safety, Phase 3 is unhealthy human trials for efficacy (does it work on the people that need it?), then the drug is released for use. If trials need to be run to use an approved drug in another way, that is Phase 4. This is not done if the cost does not show enough benefit. For example, Provigil is approved as a narcolepsy drug. It is sometimes prescribed for MS fatigue but that is not the approved use. If the drug company wanted to get that use approved, they would do a Phase 4 trial. It is unlikely they will do that trial since the benefit is small. Many doctors prescribe drugs for another (off-label) use.

Several attendees are participating in trials. I spoke with one person who is getting the annual injection. He got a rash during the first one, which is every day for 7 days. He will have a 3 day injection after a year and then is unsure what happens after that. This is the drug that can cause large blood blisters, which if not treated, lead to death. Yes, all the drugs have side effects, and the more efficacy, the higher the risks. It's a huge burden to everyone with MS to make these decisions about their own treatment. Their doctors help, but makes it very important to get the right doctor, maybe second opinions, and be very informed about options, treatments, and risks.

I thought it was funny (not ha-ha) that Dr. Hendin said the oral drugs are for (among other things) people who do not like injections. Who likes injections? Buehler? Darin said I need to call Betaseron to get the other pieces to the autoinjector that they don't send automatically. They allow more shallow injections. I'll add it to my to-do list. I also need to follow up with Phil about volunteering with the Chapter. I will be calling newly diagnosed in the 20-30's age group.

The next 20s-30s group is June 4 at Skateland.

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