I Advocated for Myself and I’m Proud
I’ve kind of been in a medical limbo since September. My biologic drug, Inflectra (a Remicade biosimilar) has stopped working at the capacity that it used to.
We upped me to the full dosage of every 4 weeks but I noticed no difference in the last 6 months. Naturally, I’ve been pretty frustrated with being a sick person and having nothing my rheumatologist and I think of actually work. Back in August before all of this, I even tried Cortisone shots, which did nothing as well.
It’s definitely emotional when a drug stops working and there’s seemingly nothing to do. I’ve seen my doctor more times in the last 6 months than I usually do in a year. The last few times his suggestions were to just stretch as much as possible.
I would leave his office upset because whenever I’m able to do yoga, it just hurts me more. I’m allergic to NSAIDS, so it always felt like I had run out of options, and I would be operating at this level of pain and fatigue forever. At my second last visit, he sent in the paperwork for me to get a new MRI to look for inflammation in my SI joints.
The results were upsetting
The results brought me back to how I felt at the beginning of my health journey. They came back fine. Of course, I don’t WANT inflammation, but when you’re in this amount of pain, you want some proof.
He had forgotten that I had cortisone shots already and suggested I try that. I said no because they did nothing and weren’t worth the pain. That’s when he again suggested the daily stretching, and I decided to speak up this time.
I spoke up and I’m so glad I did
I know a lot of people who are on Humira, and I’ve heard good things from them. I've also seen commercials for it on TV and I’ve thought a lot about it during the 6 months of unchanged pain I’ve been in.
After he suggested the stretching, he was getting ready to go. That’s when I spoke up and mentioned that I was actually thinking of asking him about Humira this visit.
I usually don’t speak up because I’m too scared to. I don’t like my ideas being rejected, so I’d rather not and stay quiet. But I had been quiet for too long, and the pain and fatigue were becoming too much for me to handle.
His reaction surprised me. He told me he wasn’t sure if insurance would cover the cost of the drug, but he would send in the forms in the off chance that they would. He immediately printed off the forms and got the nurses to help me with the rest of the work.
After the appointment
Even though I wanted that outcome, I went into our appointment not expecting it at all. My rheumatologist really got the wheels in motion, because within a week I’ve been signed up and sponsored to be on Humira!
I’m so proud of myself for speaking up when I really needed to. I knew what I had to say to advocate for myself, so I did it.
If you know something isn’t right with your drugs, please don’t hesitate to speak up. I’m currently awaiting my first dose of Humira, and I’m so thankful because I wouldn’t have wanted to stay on Inflectra just because my MRI didn’t show anything. Speaking up can bring the results you really want!
Other than back pain and fatigue, what is the most common symptom that AS patients experience?