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2023 Already Got Me Down

So I wrote my blog post for last week, scheduled it to post... and then found myself in absolutely the worst autoimmune flare I have experienced since diagnosis back in 2008. I never thought I would find myself back in the space of health blogging, but here I am.


I'm April of 2020, I was struck with the dreaded Covid. There were no tests available, but there is no question in my mind or the minds of my doctors that the multi-month saga that caused massive changes in my body was that darn bug. It also caused my body to stop responding to Cimzia - one of the best biologics I had been on. I was so sad to say goodbye.


I switched to Otezla in fall 2020, excited to give up injections, but also excited for a selective immune modifying medication during the pandemic. It worked really well on my skin, but my digestive tract absolutely hated it and my joints were only moderately controlled. I stuck it out until fall 2022 - I was fed up with the side effects.


At this point I tried out Tremfya - a new class for me but back to injections. Sadly, after a few months I started to flare in ways I hadn't seen before. I woke up one morning with my jaw out of place - a new and extremely painful event. Shortly thereafter I found myself struggling to open and close a fist. Last week, I couldn't do it at all. After a steroid burst, I was still struggling and feeling completely defeated.


This week, I started Inflectra (a biosimilar for Remicade). I was super nervous about the switch to an infusion but it was so much easier than I thought it would be. My first infusion had only one hiccup - on placing the IV I had a vasovagal reaction (where my blood pressure drops and I feel faint). This is fairly common for me with injections, and all we had to do was raise my legs and I was back to normal.


It took about 4 hours start to finish, and I go back for my next loading dose in 2 weeks. I don't know if this will get me back on track, but I am thinking positive. Remicade has been magical for so many of my friends - I hope it will be the same for me!



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