August 20, 2025
Tate had a busy medical week with Wednesday, Thursday and Friday being infusion days for Saphnelo and two long IVIG days. Tate is especially battling bad headaches/migraines this round. Each month is slightly different in response and severity of side effects. Ivig is a donor blood product that takes thousands of donors and pulls out the antibodies to support Tates immune system. So you never know quite what you’re getting. It kind of stirs the pot and Tate feels worse for a few days with headaches, body pain and fatigue. Then things level out.
Initially we started IVIG when Tate was 10 to fight against the antibodies attacking her brain. As her disease processes became more systemic and she remains so immunocompromised, we find it also helps her fight off viruses which the saphnelo infusion now adds further susceptibility towards. Tate has had over 200 IVIG infusions alone over the years.
We had a rheumatology appt last week Friday to update about Saphnelo response. The amazing news is it has basically taken away Tates sun sensitivity which caused nausea and rashes and an overall systemic inflamed response = miserable. This is HUGE for Tate’s quality of life where even sunny car rides were tough.
Saph is a lupus med and we knew it wouldn’t help all, but are disappointed that Tates cell destruction isn’t much better and she actually has climbing inflammation markers meaning although lupus is a BIG issue for Tate, its not the sole driver of the whole body inflammation. (We did know this but were hopeful.) But…we’ll take this win. We’re headed for a FL Birthday trip re-do in Sept. that we had to reschedule due to hospitalization this past Jan-April. And THIS means Tate can actually enjoy it. We’re so excited!
Fun Fact….this weeks 3 infusions alone cost around $135,000. We give continual thanks for great insurance that allows us to access these lifesaving treatments.