I’m still looking for a factor product that works for me
The latest product I tried had disappointing results
Plan D. That’s what I’m working on now.
Last week, I learned that a factor VIII (FVIII) product I’m taking for my hemophilia has had some disappointing results. I can’t say I’m surprised about that, as I had a negative reaction to the medication, including feeling lightheaded and fatigued for days. While I suspected the FVIII from my plan C didn’t work, I’d really hoped I was wrong.
The first and only dose I took was used to test the product’s half-life to make sure it would provide me the length of coverage I need to prevent and treat bleeding episodes. The expected half-life was about 15-17 hours. I held my breath as I opened my online patient records to review the results. The tests showed a half-life of only six hours.
“I knew it,” I thought to myself, followed by, “I wish I hadn’t been right.” I wanted to cry. It was incredibly discouraging, as I’d been so hopeful for a different outcome.
That night, I turned to comfort food like french fries and ice cream, and I might’ve even baked four different flavors of meringue cookies over the weekend. (The cinnamon latte ones were really good!) Then I turned to social media, where I have an amazing group of friends from the hemophilia community. Being able to share my struggles with them is so helpful. It was a good reminder of the importance of reaching out to my community in moments like this.
Reaching out for support
It’s incredibly stressful when medications don’t work as expected. But I’m certainly not alone in this struggle. Connecting with others who’ve been in a similar situation is hugely comforting. It’s a testament to the power of sharing with others who’ve walked a similar challenging path. Good friends will laugh with you, cry with you, and curse with you!
I reached out to my hematologist, who was both supportive and empathetic. We went back and forth about my next step — my plan D — which will be the fourth hemophilia medication I’ve tried. I shared my thoughts and concerns, and she provided me with research insights to help inform my decisions. As I weighed my options, I shared with her my thought processes about the next product to test. I appreciated it when she affirmed my reasoning and logic.
Because the preauthorization process with insurance companies can take a long time, it’ll likely take several weeks for me to try the next medication. Two standard half-life (SHL) products have already failed for me, so I need to be using extended half-life (EHL) products. Some insurance plans don’t cover EHL products because they cost more. My care team must provide evidence that I “failed” with the SHL products in order to prove that I need the EHL ones. That’s known as “step therapy,” or “fail first.”
SHL products are usually taken every other day, while EHL products are taken twice weekly. But I’ve had to take EHL products every other day since my body clears them faster than expected.
As frustrated as I am, I remind myself that my plan B is mostly doing its job, so I can take the time I need to get to plan D. I also step back and have immense gratitude for the manufacturers who’ve created so many options for treating hemophilia. This diversity of products enables me to have critical conversations with my hematologist to determine the best treatment moving forward. Not all diseases have this many treatment options.
I’m confident we’ll figure this out, even if it takes more time than I’d like. I’m hopeful plan D will be the solution that works. If not, I’ll bake more cookies and figure out a plan E with my hematologist. Hope remains.
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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