This post is all about the “Big Gun,” Solaris. This is the medication that is supposed to do the trick. A big prayer that this treatment is the big fix. There was talk of other treatments after the PLEX and IVIG, such as next steps if they didn’t work. But there has been no talk of treatments if the “big gun” doesn’t work, so that’s scary. Let’s pray this is the fix, the fix for the rejection, and the fix for the rate. The rate is most definitely on the back burner till after these treatments, at least.
Solaris is being used off-label for the treatment of Amanda’s antibody mediated rejection (AMR). The transplant pharmacist, the one who looks like she’s barely out of high school, said most medications to treat AMR are used off-label. The intended use of Solaris is for paroxysmal nocturnal hemoglobinuria, a rare blood disease, and also a mouthful.
As I mentioned it is expensive, our cardiologist said $100,000 a dose, but I think he meant treatment. After looking it up, it is roughly $25,000 per dose with the amount she is receiving. Either way, we can all agree, too expensive. It was listed as the 7th most expensive drug in the world in 2023. On average, for annual treatment of its intended use, it costs over 3/4 of a million a year. While researching the drug, I found articles on how it is too expensive, with many governments with socialized medicine not offering the life-saving medicine because they weren’t able to negotiate reasonable prices with the maker. There is a good article and video on that aspect of the drug here. In 2023 Solaris ranked as the 7th most expensive in the US.
The pharmacist also went over the risks of the drug. The top of the list was the risk of meningitis. Amanda found an article stating Solaris increases your chance of contracting meningitis 2000 times. The patient safety card that we received and are supposed to give to any healthcare provider or ER we go to said the meningococcal vaccines should be given two weeks prior. They also listed meningococcal symptoms to look for and advised healthcare professionals to test for meningitis if presenting with any of those symptoms. Since they are starting the Solaris now, Amanda will be receiving penicillin twice a day for the entire course of treatment.
The meningitis risk is for 3 months after the treatment. We aren’t going to isolate ourselves for that entire time, but we will be very careful. So, if you are thinking of giving Amanda a big hug or kiss once you see her when we’re finally back home, don’t. No, really, steer clear of her; don’t even look at her if you have a sniffle, either! I told her we are going to have to go back to post-transplant during COVID protocols.
She’s planning on working and still leading worship. We were asking if treatments needed to be exactly a week apart. Friday would be a terrible day, being two days before service and the day before worship practice. Either way, she will have to be careful with big crowds and stay far away from everyone with symptoms of anything short of joy or happiness!
Okay, buckle up. I’m about to get deep, really deep, into how the rejection is being treated by Solaris. The transplant cardiologist rounding in the ICU this week was the transplant director. It had been a while since we’d seen him, back in the transplant days. One of the first things he asked Amanda was to tell him what they were doing. Amanda said, cleaning out the bad antibodies. He agreed but said not anymore. Since that wasn’t working, they scratched that plan of attack and started this new one.
He is an assistant professor at the Baylor College of Medicine. I imagine he is a great one because of the way he explained things to us. Then, he went into great detail about exactly how Solaris works. Before, we were trying to get rid of the antibodies, but that approach didn’t work. Now, we are trying to stop their attack on Amanda’s heart on a molecular level. After he left, I did a ton of research and felt like a light bulb had been turned on afterward.
Bear with me; I’ll bring it all together in a bit. So there are things called complements, which are a group of proteins in blood serum and plasma that, in combination with antibodies, destroy antigens (like bacteria and foreign blood particles). The complement system overall is part of the natural immune system that enhances (complements) antibodies. Even though it is part of the natural immune system, it can be brought into action by the adaptive immune system. In our case, they essentially adapt to destroy the new heart. The complement cascade is kind of like a family tree. We’re looking at the C complex, specifically. It starts with C1, then C2, then start adding letters C3a, and so on.
As our pastor says, when he gets deep and everyone is quiet, “Are you still with me?” So when we get to C5, that’s where things become a problem for us. C5b and C6-9 all go on to attack the grafts to Amanda’s new heart. So now I’ll quote Wikipedia: “It (Solaris) is a humanized monoclonal antibody functioning as a terminal complement inhibitor. It binds to the complement C5 protein and inhibits activation of the complement system, a part of the body’s immune system.” I had read that days ago, but it made no sense until the cardiologist today explained the complement. The Solaris stops the cascade at C5, thus stopping the attack on the heart.
The AMR development pic really helped me to understand this. This is just a summary of what I’ve been researching all day. I have strong GoogleFu, and it served me well today. I know I dive deep into these things, but I like to be informed. This is Amanda’s life, which we’re talking about here, after all. I wanted to share things on the “big gun” since that’s what today is all about. I’ll update on how today went later on.
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