I Started Rinvoq, So I Finally Have Meds Again

Posted on by Grayson

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.

EULAR Education Disrupting the Status Quo: Advancing LGBTQIA+ Inclusion in Rheumatology Practice and Research EULAR Webinar with HPR Wednesday June 24 2026 17:30-18:30 CEST Photos alongside the following names Dr. Codie Primeau Grayson Schultz Dr. Benedetto Giardulli Dr. Simon Stones Dr. Simone Battista

Free EULAR Webinar June 24

Posted on by Grayson

If you missed my ACR presentation and wished you had made it, I’ve got great news!

My colleague Codie and I are presenting alongside Dr. Benedetto Giardulli to present on improving LGBTQIA+ care and inclusion in research. Our session is being moderated by Dr. Simone Battista and Dr. Simon Stone. I admire these three guys so much and have for ages. It’s really an honor that I get to work with them on something so important.

Below is some information about this FREE presentation:

LGBTQIA+ individuals face unique challenges in accessing affirming, quality healthcare and are often underrepresented in both clinical care and research. These communities experience higher rates of chronic health conditions, including arthritis, yet their needs are frequently overlooked. Discrimination, negative healthcare experiences, and social determinants of health disproportionately impact LGBTQIA+ communities, often leading to delayed or avoided care and poorer health outcomes. In rheumatology, as in many specialties, these disparities are also reflected in research practices that do not fully capture the diversity of LGBTQIA+ experiences and in clinical settings that may benefit from enhanced inclusive practices. This session will explore how inclusive care and research practices can improve experiences and outcomes for LGBTQIA+ individuals with rheumatological conditions.

This EULAR webinar starts at 5:30 pm CEST, which is 11:30 am ET. You can check what time this is in your time zone here.

Learn more about the webinar & register here.

ACR Releases New JIA Treatment Guidelines

Posted on by Grayson

Below is a press release from ACR dated May 13, 2026:

The American College of Rheumatology (ACR) released updated guidelines for the treatment and management of juvenile idiopathic arthritis (JIA). These guidelines are companions to previously updated JIA guidelines released by the ACR in 2019 and 2022 and this update covers several types of juvenile idiopathic arthritis including polyarthritis, oligoarthritis, TMJ arthritis, enthesitis and dactylitis. Juvenile idiopathic arthritis related uveitis was also addressed as well as selected topics in non-pharmacologic management and imaging.

“The guidelines encourage early use of DMARDs with attention paid to risk factors that would suggest the need for early escalation of treatment. To that end, use of biologic DMARDs without the requirement of “failure” of conventional synthetic disease-modifying antirheumatic drugs (csDMARDs) was supported. Any required waiting period is too long if a child is not doing well,” said Karen Onel, MD, Chief of the Pediatric Rheumatology Division at the Hospital for Special Surgery in New York and the lead investigator of the guidelines. “Balancing treatment with careful screening for side-effects will allow for the best outcomes.”

The overarching goals of the updated guidelines are to promote early and aggressive treatment of JIA that preserves function and maximizes quality of life, encourage timely screening and monitoring to prevent articular and extra-articular damage, and facilitate effective shared decision-making among clinicians, patients, and caregivers.

“Many children in the US and around the world do not have access to expert pediatric rheumatology care. These guidelines should assist not only pediatric rheumatologists but adult rheumatologists and pediatricians in choosing best treatment for children with JIA.” said Dr. Onel. “Recommendations supporting the use of oral over subcutaneous methotrexate is a change from previous standard of care. Continued decreased reliance on NSAIDs and glucocorticoids has been emphasized. Recommendations have been made for mental health care in keeping with recent ACR guidance.

Like many other ACR guidelines, the updated guidelines for JIA were developed using Grading of Recommendations Assessment, Development and Evaluation (GRADE) methodology, which creates rigorous standards for judging the quality of the literature available and assigns strengths to the recommendations. The papers containing the full list of recommendations and supporting evidence are available on the ACR’s guideline page.

Lupus Identified as a Leading Cause of Years of Potential Life Lost in Young Women

Posted on by Grayson

Below is a press release dated May 7, 2026 from ACR:

New research using death certificate data from 52,942 females, reveals that systemic lupus erythematosus (lupus) is a leading cause of years of potential life lost among young women in the United States, underscoring the disease’s significant and often underrecognized public health burden.

The study, titled “Lupus, a leading cause of years of potential life lost in young women: implications for public health priorities and research funding,” published in ACR Open Rheumatology, finds that lupus disproportionately affects women during their most productive years, contributing to premature mortality and long-term societal impact.

Years of potential life lost (YPLL) is a key public health metric that measures premature death. The study shows that lupus ranks among the top causes of YPLL in young women. This study adds to the authors’ previous work that showed that lupus is among the leading causes of death —particularly among Black, Hispanic, and other historically underserved populations—highlighting persistent health disparities.

“These findings reinforce what the rheumatology community has long observed: lupus is not only a chronic disease but a life-threatening condition that cuts lives short,” said lead researcher Ram Raj Singh, M.D. at the David Geffen School of Medicine at the University of California at Los Angeles (UCLA).  “Despite this, it remains underfunded relative to its impact.”

Key findings from the study include:

  • Lupus is a leading contributor to premature mortality among women of reproductive age.
  • The societal and economic costs of lupus are amplified by its impact during peak working and caregiving years.

The authors emphasize that the findings should prompt policymakers and research agencies to re-evaluate funding priorities. Despite its high burden, lupus research funding has historically lagged behind other diseases with comparable or lower YPLL.

Advocates say the study strengthens the case for:

  • Increased federal investment in lupus research through agencies such as the National Institutes of Health (NIH).
  • Expanded access to early diagnosis and specialized care.
  • Development of safe, effective, and affordable treatments for lupus.
  • Public health initiatives aimed at reducing disparities and improving outcomes in high-risk populations.

“Addressing lupus requires a coordinated national strategy,” said Andras Perl, MD, PhD, Editor-in-Chief of ACR Open Rheumatology. “We have an opportunity to save lives by investing in research, improving access to care, and raising awareness of this devastating disease.”

Lupus is a chronic autoimmune disease in which the immune system attacks healthy tissues, leading to inflammation and damage across multiple organ systems. There is currently no cure.

Text states "The Patient Voice: What I Wish My Rheumatology Care Team Knew." There is a rainbow graphic on the slide alongside a photo of Grayson from 1993 where he is exhaustedly sleeping on the couch.

Presenting at #ACR25

Posted on by Grayson

In 1993, I was five years old. By mid-November, I developed an itchy rash of unknown origin along with fatigue, joint pain, and swelling.

It took 8 months — along with a host of misdiagnoses, including leukemia — before I was diagnosed with Systemic Juvenile Idiopathic Arthritis / Juvenile-Onset Still’s Disease.

My whole life has, for better or worse, been defined by having a rare condition. I had to become an expert in it in order to survive into my 30s… which is something I frankly didn’t count on for most of my life.

Tomorrow afternoon, I get to co-present a session at the American College of Rheumatology’s Annual Meeting alongside some of my favorite people. Presenting in the same space as the superheroes who take care of patients and change lives every single day is something I never could’ve imagined as a kid. It’s humbling and awe-inspiring and, honestly, something that’s been on my professional bucket list.

Our session, “Breaking Barriers: Advancing LGBTQIA+ Inclusion in Rheumatology,” explores how we can make rheumatology practice and research more inclusive. I’ll also share what it’s like living rurally with multiple rare conditions while being queer and trans.

We’ll be presenting virtually, and the session will be available on-demand for anyone attending ACR to view later.

This milestone means a lot to me, both personally and professionally. It’s also vital in the trying times we find ourselves in. If you’re attending ACR, I’d love for you to tune in if you can.

5 Months After Approval, I Still Don’t Have Ilaris – And I’m Not Okay

Posted on by Grayson

I’m an expert on Still’s Disease, both as a researcher and as someone living with it since childhood.

Despite this, I’ve spent the past six months fighting to access the biologic medication that keeps my rare autoinflammatory disease in check. Short of explaining all the ways Still’s Disease is terrifying, this medication literally keeps me both stable and alive.

After six month of fighting, I still don’t have it.

My uncontrolled disease is running rampant. The excess inflammation is worsening the bulging cervical discs I have, causing immense pain on top of endless frustration.

Between a self-funded insurance plan through my spouse’s employer, the plan’s administrator Employee Benefits Service Center, delays from the pharmacy benefit manager TrueScripts, and a lack of urgency from those with the power to help, I may not receive my medication before traveling to Spain next week for the OMERACT meeting — a meeting focused on improving health outcomes for rheumatology patients.

Despite my relentless efforts to navigate the system, I’ve been met with silence, slow responses, shifting responsibility, and even apathy.

This never should’ve happened in the first place.

I was previously receiving Ilaris from the Novartis patient assistance program. They ended these programs for anyone with private insurance at the end of 2024, leaving countless patients like me without a safety net and in excruciatingly declining physical and emotional health.

If someone like me — someone who knows the disease, the system, how to advocate — has this much trouble accessing essential care, I can’t help but wonder how many others are quietly struggling or have been forced to switch back to a medication that was not effective. Despite how people view me as positively stubborn, I’ve been struggling with feeling forgotten, dismissed, and being too exhausted or in pain to handle all of this.

I don’t know what else to do anymore. The hundreds of hours I’ve spent coordinating between my provider, the PBM, the insurance plan administrators, and even my spouse’s HR representative all feel like they’ve been for nothing.

What I do know is that this isn’t right. This system must change, and it has to prioritize people’s lives over profits.

Patients deserve better. I deserve better — especially when the consequences of not having medication can be fatal.

If I die because of this ongoing lack of treatment, scatter my body parts in front of all these company’s locations.

Note: Everything I share here reflects my personal experience and views — not those of my employers, collaborators, or any organizations I am affiliated with. I’m speaking for myself, sharing a deeply real, painful, and ongoing struggle that has taken an immense toll on my health, my hope, and the joy I had for this year.

Where I’ve Been

Posted on by Grayson

Many of you may know that I have hypermobile Ehlers Danlos Syndrome (hEDS). For the last 6 months, I’ve been dealing with a complication of this condition, called Craniocervical instability (CCI).

May be an image of text that says 'Hyperextension Hyperflexion KGEE Sprain or strain of cervical tissues'
Image description: An image of neck hyperextension and hyperflexion, which can both lead to sprain or strain of cervical (neck) tissues. (source)

My neck, my legs, and my pain levels

In December, I wound up with what we figured was a pinched nerve. One of my healthcare providers told me this was just unprocessed trauma showing up in my body. It took me switching to a new primary care provider who also has EDS for my neck issues to be taken seriously.

I had an MRI on April 1st, which showed that I now have two bulging discs in my neck.

Complicating matters is that it’s taken FIVE MONTHS for my insurance to agree to cover a medication for my Still’s Disease. I don’t have it yet, but hopefully I will this next week. They don’t want to cover this medication because it’s expensive. It’s also one of only 3 medications that treats this rare disease. I’ve already been on one of the others which stopped being as effective for me after having been on it for nearly a decade.

The extra inflammation in my body because of not having my medication is making my neck MUCH worse, to the point where the discs are booping my spinal cord. This happens occasionally, but more often than before. On top of the nerve pain this causes — which can’t be touched by any pain medication — my body is less coordinated than normal. I drop things a lot and run into things more often. The nerves in my back begin to fire all at once if I get overheated or do too much without taking a break, especially if I’m using my arms a lot. Like I said, there’s no way to attack that pain with medications.

The only way out of it is through. Sometimes that means sitting down for 5 minutes or writhing in pain for an hour.

 

Surgery isn’t really an option – yet

Because of having CCI and hEDS, surgery to fix this won’t fix the underlying issue. I also have Mast Cell Activation Syndrome, which reacted so badly with general anesthesia when I had top surgery that I nearly died.

So, surgery isn’t an option… for now. It won’t be until this gets completely unsustainable. And that’s if I could find a surgeon who would be knowledgeable about my conditions and willing to take on the risks.

I’m working with my EDS-focused physical therapist and my primary care doctor on what to do now. CCI often benefits from physical therapy. I’m not able to see my EDS PT as often as I need to, though. I also see her virtually, which is usually great. For this, though, I need to find someone to see in person. That person needs to know how to handle CCI and be willing to learn about EDS. Otherwise, I’m putting myself at risk of further injury.

 

How I’m doing

Again, I’m dealing with a lot of pain. I’ve had chronic pain since I was 5, but this is a whole different ball game. With my neck being unstable already and the lack of access to my medication, I already wasn’t going out and doing a lot. Now with the bulging discs, though, I have to be very mindful of how I support my neck. I generally have a maximum of 2 hours of sitting upright in me before I have to rest and make sure that I’m supporting my neck by using a neck brace, propping up my neck with my hands, laying down, or leaning back against a chair or couch.

This is also causing a lot of muscle spasms. I have to roll out my leg muscles every single night before I go to be on top of taking a muscle relaxer. This has eased up slightly with starting a number of vitamin supplements, but is still an ongoing issue. If I don’t do these things, my leg muscles lock up and I can’t sleep.

I’m… very tired. I’m tired of fighting insurance on getting my medication covered. This is something they said they would do back on January 30, but keep putting roadblocks in our way. I’m exhausted from having to constantly think through what I want to do and consider if it will cause my body issues. Though, I’m also just as frustrated about trying to do things and not being able to or causing myself pain in the process.

A photo of Grayson face-on. He is sitting on a couch with his left arm supporting his neck.
Image description: A photo of Grayson face-on. He is sitting on a couch with his left arm supporting his neck.

I’m very grateful to have the best two helper dogs in Hank and Dean.

Hank (left) and Dean (right) look out the front window of our house while on the couch. They are black-and-white smaller sized mixed breed dogs.
Image description: Hank (left) and Dean (right) look out the front window of our house while on the couch. They are black-and-white smaller sized mixed breed dogs.

I’m also honestly feeling worried about my spouse. This is a lot of stuff all at once. The balance between being a partner and a caregiver is a hard one to deal with. It’s overwhelming for me, absolutely. I don’t have the added helplessness of not being able to do anything about it.

 

Moving forward

We’re heading to Spain in a few weeks. I’ll be attending the 2025 OMERACT conference.

I’m honestly not sure how traveling will go, let alone attending sessions.

Thankfully, I’ll be among friends and world-renowned rheumatologists. It’s probably one of the best places to be with how my body is right now.

If I know you in real life, don’t stop inviting me to things. I can’t guarantee I’ll be able to attend anything, really. But, I still appreciate being included.

If I don’t know you in real life? IDK. Send happy thoughts my way, maybe?

a red-filtered hand in pain with text next to it: "Unifying SJIA and Still’s disease"

Unifying SJIA and Still’s disease

Posted on by Grayson

EULAR and PReS have published a journal article detailing “the diagnosis and management of Still’s disease, comprising systemic juvenile idiopathic arthritis and adult-onset Still’s disease.”

This combination will help to solidify that SJIA and AOSD are the same disease. It will also help clarify what treatment should look like, for those who have decent access to healthcare. The author issue 14 recommendations, with 3 on diagnosis, 2 on treatment timing, 3 on treatment options, and the rest focused on complications and issues to watch out for.

Check out the Medical Xpress article that goes into a high-level look at the article. You can also check out the full open-access article itself.

DeepCure’s AI Platform Creates Novel Brd4 Inhibitor

Posted on by Grayson

The following is an excerpt of an article on Drug Discovery Trends, dated 9/9/2024:

The company’s first AI-generated drug candidate, DC-9476, a selective Brd4 BD2 inhibitor, embodies this approach, showing promise in preclinical models of autoimmune diseases like rheumatoid arthritis (RA) and Still’s disease. In RA models, DC-9476 demonstrated superior efficacy compared to standard treatments, including TNF-alpha inhibitors, IL-6 inhibitors, and the JAK inhibitor tofacitinib. DeepCure recently announced a collaboration with the Leeds Institute of Rheumatic and Musculoskeletal Medicine (LIRMM) to test DC-9476 in RA.

Read the full article here

ACR Encourages Patients to Implement Self-Management Strategies #RDAM

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The following is a press release from ACR dated September 9, 2024:

The ACR Encourages Patients with Rheumatic Diseases to Implement Self-Management Strategies to Improve Quality of Life

American College of Rheumatology (ACR) experts identified research suggesting that patient self-management is not as prevalent as it should or could be despite the improvements patients experience when implemented. This is due, in part, to many patients lacking awareness and motivation to self-manage and thinking the only way to control their disease is by taking their medication.

Today, the ACR launched its patient education campaign, Self-Management for Patients Living with Rheumatic Conditions for Rheumatic Disease Awareness Month (RDAM). The campaign addresses the current knowledge gap, educates patients about self-management techniques, and encourages them to collaborate actively with their rheumatology healthcare team to manage their rheumatic condition.

The campaign does not delve into self-care practices yet focuses on self-management strategies for managing a patient’s rheumatic condition.

“One thing that is important to note is that self-management is often used interchangeably with self-care, but they are different. Self-management is an individual’s day-to-day management of their chronic conditions over the course of an illness,” says Bhakti Shah, MD, a rheumatologist with Crystal Run Healthcare in Middletown, N.Y., and the campaign’s medical spokesperson. “Self-care consists of those tasks performed by healthy people to prevent illness rather than manage an existing illness.”

The campaign highlights five overarching strategies patients can incorporate in their lives. They are:

  • Stress Management –Rheumatic conditions can impact a person’s physical and mental health. Patients can create relaxation practices like meditation, self-reflection, or journaling.
  • Medication Adherence –Patients should partner with a clinician to understand their medications, what aspects of their disease they treat, and the importance of continuing these medications.
  • Lifestyle Changes –Regular exercise and eating a healthy diet are essential for general well-being and may help improve symptoms.
  • Communicate and Collaborate with a Healthcare Team –Patients should maintain open communication with their rheumatology healthcare team, including the rheumatologist, physical therapist, and other specialists.
  • Maintain a Support System—Patients should ask family or friends for help when needed, especially during a flare.

“Each patient encounter is an opportunity for rheumatologists (and rheumatology health professionals) to remind patients to incorporate self-management techniques in their lives. During my patient visits, I try to review topics such as medication adherence, physical activity and quality of life and I remind them that we are a team and collaboration will lead to improved outcomes for them,” Dr. Shah continues. “We hope this campaign will empower patients to take a more proactive role in their treatment journey.”

Rheumatic Disease Awareness Month is recognized each September, drawing attention to more than 100 conditions under the umbrella of rheumatic diseases. Rheumatoid arthritis, osteoarthritis, and lupus are some of the most commonly known. Others include Sjögren’s syndrome, gout, scleroderma, and psoriatic arthritis. More than 53.2 million American adults—one in four—have been diagnosed with rheumatic disease.

To view the full self-management toolkit, visit www.RDAM.org.