Big News

I've been looking into clinical trials for Soliris worldwide, and hadn't come up with anything quite yet. I wanted to be armed with information and then present it to Brian's team of doctors and start to "fight" for him to get the drug. At least to try it out!

So imagine my surprise when Brian phoned me from the hospital yesterday to tell me that his favorite Hemotologist told him he was going to start on Soliris in the very near future! With the complications Brian's been having at PLEX treatments (allergic reactions to human plasma, lack of a good response to synthetic plasma, numbers being very low despite blitz treatments, etc) the doctors have been running out of options. And Brian, I would think, would be a good candidate for a "trial run" of Soliris based on the fact that his kidneys are still functioning at 80%. In terms of aHUS, 80% kidney function is huge! Most often, the disease isn't caught until kidney function is almost at zero.

They hope to start treatment at the end of August. In the meantime they have to get a few things sorted out. For starters, they have to get IN WRITING that the drug company has agreed to put Brian on Soliris. So far it's only been a verbal agreement. Today Brian is getting the meningitis vaccination that is required for treatment. Soliris lowers resistance to infection, especially meningitis.

Brian has only been approved for three months of Soliris, being that it is such an expensive drug. When the three months are up, they expect the disease to return. Soliris is not a cure, it is a treatment option. But while he is on Soliris, here's what he can expect: Normal platelet count, without PLEX treatments. Lowered blood pressure, without medication. A return to normal hemoglobin, and creatinine levels. Woohoo!

Life will look VERY different for those three months. And at the end of those three months, his doctors can always re-apply, especially if Brian does really well! A few other things are going to have to change while Brian is being treated. Being that he is prone to infections, we will have to stay VERY far away from sickness