New MG research

[Smedy]

http://www.sciencedaily.com/releases/2007/12/071220170334.htm

[cynwldkat]

Do you know who I would contact to possibly get my sister on this list when and if it does happen?

[Kayak]

Science Daily has a tendency to publish, uh, "quickly" and a word of caution is that it would not be a bad thing to see if there are follow-up articles. Some of the articles could benefit from more "peer review", and it's good to check and see if the author or perhaps a pharmaceutical company has an interest in the wider use of a drug.

There's just an outside chance that the possibility of huge sales could cloud their judgment about the efficacy of a medication, and we who are ill, have been known to grasp at any straw.

Today, for example, none of the 4 articles about how wonderful Enbrel is make any mention of lawsuits in cases where people have died from infections. Enbrel is hot stuff, but there are side effects when one's immune system is suppressed so effectively.

I'm just recommending optimism and caution together.

[cynwldkat]

I understand and agree. You are also right about being so desperate to grab on to anything that might help! I guess that is where I am right now. But, as you mentioned, there could be problems associated with any new drug. I know I am leaping before looking but how does one control that emotion when in such a bad situation? It's so hard being patient and at the same time watching my sister slip away! I know most of you are probably in or have been in similar situations and I admire your strength. Maybe through reading these posts here I too can gain some of your strength.

[Kayak]

Well, there's nothing wrong with contacting the doctors or hospitals mentioned in the articles and seeing how they are handling referrals. Because I'm a cynic and because the pharmaceutical houses want excellent results, you may find that they are "cherry-picking" their candidates. It does not hurt to try. The worst that will happen is that you know more than you know now. How bad is that?

[Raechel]

Smedy, Thank you for finding this. It is a great find.

Kayak, I have to disagree with your take on this article. This research has been done by a University, not by a drug company. While a member of their team is from Alexion Pharmaceuticals, that's just a pretty standard thing to have. What they have found is actually quite promising and exciting. Does it really matter what journal it is in? The findings are also published in the Journal of Immunology. Dr. Henry Kaminski is highly respected, as are his colleagues. I rather doubt they are under undue influence of the drug companies.

I certainly understand your sketicism of drug companies. They often put drugs out there without proper evaluation and then end up with lawsuits due to bad side effects. Even ones that have been on the market a long time, like Imuran, still have nasty side effects. This situation is different. This is a research University that has discovered something that could change the course of MG and other autoimmune diseases. I am very encouraged by what they have found!

It is very early on in the process so who knows what drug can come of this. I think there is always reason to hope there will be something better out there for MG patients. It doesn't affect me because I have CMS but I was misdiagnosed with MG at first, so I know a lot about it.

Cynwldkat, I hope your sister and her doctors can find something to give her some relief of symptoms. It wouldn't hurt to contact St. Louis University and ask when they might be looking at clinical trials. They usually don't like to put patients on clinicial trials who are not stable. Every clinical trial has it's own set of "rules" about what patients, what drugs they are on currently, etc. Good luck.

Raechel