One of the most recent times I posted on here was back in May of 2025. I was in the middle of a six-month-long (at that point) fight to get Ilaris covered by my insurance plan. I finally received Ilaris on May 9, 2025. That and a steroid burst got me through my conference in Spain.
The rest of last year was pretty rough, though. I was able to access a couple more months of Ilaris and one month of Actemra. I thought we were in the clear, but…
With one business hour left in 2025, I was informed by TrueScripts (the pharmacy benefit manager) that both Actemra and Ilaris would no longer be covered by our insurance plan. The only one of the 3 FDA-approved SD treatments they would cover was Kineret. It makes sense, since they had tried throughout 2025 to push me back onto that. But, it wasn’t working well for me anymore, which is why I had switched to Ilaris in the first place.
To say I was frustrated is probably the biggest understatement I’ve ever made.
2026 So Far
By February of this year, I had pretty awful inflammation that I couldn’t get under control without meds or steroids. My eyes have been inflamed since then.
In March of this year, I spoke at the City Council meeting where I live. I highlighted the issues I’ve had with insurance coverage since joining the plan in 2023, which have been numerous. After this, I’ve spoken with multiple City Councilors and reporters about this absurd odyssey.
The extra inflammation in my body led to a nasty case of shoulder bursitis following subluxation in my sleep due to hEDS. Frankly, between insurance and waiting on provider availability, it took six weeks to get the bursitis taken care of. I’m hopefully wrapping up physical therapy this week for a tear in the supraspinatus tendon and resulting tendinopathy.
In mid-April, I met with City HR and the CEO of the Employee Benefits Service Center company that administers our health plan. Thankfully, they are covering a new treatment for me. Rinvoq (upadacitinib) is a JAK inhibitor. This finally arrived on May 11th… which marks the third year (out of 3) that EBSC-related issues have prevented me from accessing treatment until April or May.
Rinvoq
I’ve been on Rinvoq for two weeks.
Unfortunately, I’ve had some significant side effects since starting it, including severe GI issues that I reported to AbbVie as adverse events. It was bad enough that I wanted to stop this med three days in. I couldn’t really eat. I was nauseous, and had a horrible amount of bloating.
These do seem to be easing up, though the bloating is still here – just lessened. This required me to adjust supplements, start new ones, and severely limit my diet until recently, though.
Thankfully, the inflammation in my body has gone down a lot. We’ve had quite a bit of rain and storms, and my body has felt okay.
The End Result
Man, what a clusterfuck this entire thing has been.
My physical health was okay at the start of all of this. I was able to hike pretty well. And I was seeing a physical therapist to gain strength to combat my hEDS. (Specifically, we were working on shoulder strength, which would have prevented this most recent tendon issue.) Fairly quickly, my health changed. And, as I had to cancel engaging with PT, my subluxations got more frequent. I had fatigue and pain that I could not combat easily or well, leading to many days of just trying to make it to the end of the day.
My mental health has been rotten, too. My PTSD went from subclinical to incredibly active. Same with my depression. (Though the state of the world hasn’t helped with that, either.)
I’ve lost close to $50,000 since this started in lost work time, lost opportunities, time I spent doing other people’s jobs for them, and money I had to spend on medical aids, etc.
A lot of my friendships have suffered, too, since I’ve had very little energy to do things and spend time with people. Same with upkeep of this and the other sites I run. Thankfully, it feels like I’m on the other side of that – assuming the Rinvoq keeps working AND I continue to have access to it.
It is wild that this has been such a long and infuriating situation. If someone like me with a degree in patient navigation and a track record of pushing insurance companies to make better choices can wind up in a situation like this, I can’t imagine what people with fewer resources might be dealing with.
My Hope for the Future
The approval for me to access Rinvoq is active until October. All I can do is hope that this treatment remains on the formulary at that time, so I can continue to get this covered. If not, I get to call yet another audible and hope the side effects aren’t horrible.
Something about insurance and medication access has to change, for all of us. These companies should be focused on saving their members time, energy, money, and frustration like this – not causing it.