I have been meaning for a while to update this blog.
At some point in February, we finally switched Phoebe to Soliris. We were watching the factor H autoantibodies decrease. We were given hope that her autoantibody level would go to zero. They started at above 2,500 and they decreased to 2,000, and then1,200, and then 300. At that point, we still decided to switch to Soliris for several reasons:
1. Plasma was scaring us, and it was taking 12 hours 2-3 times a week.
2. I started to think that I would rather have her on Soliris for several months after reaching zero with the autoantibodies. As much as I had hoped to be done with it, I didn't want it to manifest again and cause Phoebe permanent problems.
Soliris has been really great. And the company has been very good. We had some issues with getting room at the hospital to receive it. Plus, no one there had seen the stuff and they didn't know necessarily how to handle it. Our doctor's nurse had to come to the hospital to administer it. But our case manager helped us arrange home health, and Phoebe is now receiving Soliris in the comfort of her home. So we are happy with that.
In early March, Phoebe's autoantibody count climbed to 800 and then to 1,200. It has been at 1,200 now for almost 8 weeks.
We are stilling giving her Prednisone and Cell Cept, but my wife and I are looking to get a second or third opinion of what to expect from this point forward. Should we keep suppressing her immune system with the hopes of eradicating the autoantibodies? Should we stop the immune suppression? That is the issue we are working with at the moment.
We are still waiting for Phoebe's genetic test to come back. We sent it out on January 7.
I will update again at a later date.
All of Phoebe's numbers besides the autoantibody level were good before we switched to Soliris, but the numbers got better and have stabilized. It does seem to be a miracle drug. I wish it didn't necessarily have to be an infusion every other week, but from our experience of three months of plasma, it is 100% better than that.