Alyssa’s medications have been keeping her illness at bay. Numbers have come down beautifully, such as her protein in urine, which is what I originally celebrated. However, there are other markers for her illness that have hit a wall. One is a test for antibodies, and it is still in her blood, so we are soon facing a tough decision in her treatment. Frankly, our nephrologist doesn’t know what to do, because Alyssa has a rare subtype of C3G. Specifically, she is anti factor H antibody positive, and has nephritic factor. He called the doctor we saw in Cincinnati, and he also was unsure of next steps. We may possibly need to continue her immunosuppression therapy until these antibodies go away, such as 10 years, similar to stuff like MMR vaccine needs to be redone every 10 years because body lost it’s antibodies. We need to wait for her antibodies to go away, to stop her body from dumping proteins to hurt her kidneys.
We are still waiting on a test’s results because of an unpleasant experience. Whenever Alyssa goes in for labs, the techs mess up her order, because some samples need to be sent out to Cincinnati for special tests. Each time they make a different error but this last time they drew like, EIGHT vials of blood. And NONE of them made it to Cincinnati. We had waited so long and it took a while to realize the samples were lost, that the nephrologist said to not bother running a repeat blood draw and just wait for the next routine blood draw, which is very soon. Al reported this to manager of labs, and will call for manager to let them know, “Hey, Alyssa’s coming.” We’ll also be running a test to see how fast she metabolizes her main immunosuppressant, Cellcept. There’s a question to see if she’s metabolizing it fast and may need to go from twice a day dosing to three times a day dosing.
So back to the antibodies. We don’t want to keep her on her high dose steroid, prednisolone, as it has been taking its toll on her. It raises her blood pressure, forcing her on a sucky low sodium diet. It raises her cholesterol, and she is on Crestor (rosuvastatin), which is only reducing her cholesterol a little. It’s also making her hungry, and she’s been putting on weight fast, plus it gives her moonface. We originally thought treatment would be for 6 months, but we are already reaching a year’s marker of when she started last March. So we worry about her development.
Our next option is Soliris (eculizumab), a complement inhibitor. This is a $300,000/year medication that thankfully, insurance should cover it. It’s known to work well the first time, but if discontinued may not work well the subsequent time (not sure if this is true?), which is why we would like to delay this option if possible. So it’s possible once she starts it, she may stay on it for life. It’s a monthly infusion (SUCKS!).
We think it’s time to pursue a 3rd opinion in Iowa, and our appointment is next month. Iowa is known for putting their patients on eculizumab, so we figure they are more experienced with it and may give us more information about it. We hope this is a fruitful trip. After eculizumab, there’s investigational drugs.
No matter what, Alyssa chooses to be happy. It’s beautiful to see. In fact, lately she’s having fun making YouTube videos of her stuffed animals. She wants more subscribers to her channel. 😂
One in a Trillion: Alyssa’s medical journey 