My Crohn's Diaries

After insurance gave me grief with increasing the frequency and dosing of my Remicade infusions, I finally talked to my doctor at the end of March. Instead of pushing back again, we decided to divert course to Rinvoq.

Secretly, I’d wanted to switch to Rinvoq from the start of my flare-ups while on the Remicade. I was sick of having to take so much time off work, of having to clean my entire apartment before the nurse came over, of all of the coordination and mental effort that came along with feeling like I needed to entertain my nurse, as lovely as she was, while getting my infusions. I was sick of the deliveries, of the massive amounts of trash, of the low-level pain that comes along with IVs.

I was glad to be switching to a daily pill. I was glad to lift some of the mental load. I wasn’t glad to be back at square one with insurance.

I settled in for a long haul, resigning myself to having to go back onto Prednisone to tide me over until the approval came through. I braced myself for pushback, for weeks and months of fighting, for the difficulty that always seems to come along with anything and everything lately.

Somehow, though, that didn’t happen. Only a few days after talking to the doctor about switching to Rinvoq, they reached out to say it was already approved! I was shocked! And relieved! And astonished! And all of the words!

Within days, I had a call with the CVS Specialty pharmacy to organize the delivery. A week later, my first bottle was delivered! Yay!

It was, unfortunately, quite expensive. The first bottle was $250 with my insurance. But then I signed up for the savings card and I’ve since not paid a single cent for the medication. So, if you’re starting Rinvoq, sign up for the savings card!!

I’ve been on the starter dose for two months now and, so far, it’s working. Knock on wood, right? Knock, knock, knock. It’s working. I’m less tired, I’m in little to no pain, and I’m able to eat and eat and eat without an issue. I had a call with my doctor’s PA a few weeks ago, and, based on a symptom questionnaire we went over, he said I’m close to being in remission. Obviously, it’s still early to say for sure. After this month, I’ll switch to the maintenance dose, so I’m crossing my fingers that it sticks even on the lower dose. But I’m hopeful!

I’ve been traveling! I adopted a new cat! I got a tattoo! I got my ears pierced! I had my birthday, and I got to enjoy it! Really enjoy it! I’m living my life again. After six months of Prednisone and flare-ups and insurance issues, my world is expanding beyond those things to allow for more. More fun, more laughter, more everything. I’m feeling less suffocated by this disease. I’m thinking less about it. I’m trying really, really hard to live in the moment.