Living with chronic illness is hard and exhausting. However, at times, dealing with insurance issues and the conversations that come along with chronic illness can be even tougher and more draining than the illness itself. I live with Crohn’s disease and spondyloarthritis, and these past few weeks have been particularly rough due to insurance issues to get my medication. 

The Constant Reminders 

About two years ago, I switched from injections every eight weeks to weekly injections, and in the past few months to three injections weekly. At first, I liked the switch because it felt validating and more attuned to everyday life with chronic illness. Three injections a week seemed to align with the way my symptoms, like pain, joint stiffness, fatigue, and frequent trips to the bathroom affect my daily life. Yet, over time, I started to feel like the perpetually “sick kid,” with no break from my chronic illness.  

Deep down, I just yearn to be “normal,” without the injections and other constant reminders of my autoimmune diseases. But I also know that these injections are essential for keeping my symptoms in control, so I keep my head up. It only takes five to 10 seconds three times a week, and the injection is over.  

Little did I know, that just a few short months after getting comfortable with the three injections, I would have to face another daunting task — the old-fashioned vial and syringe. 

My Treatment Plan 

So how did I get to this point? Here’s a little background. For roughly a year and a half, I’ve been on the same medication combination of a biologic and methotrexate 

A few months ago, I began to notice a slight wear-off of the methotrexate, feeling ready for the next dose about a day or two before each injection. My rheumatologist, whom I admire and who always has great suggestions, recommended spreading out the doses a few days apart instead of taking both at the same time. This way, I would get a “hit” of medication twice a week. This worked for a bit, but after a few months, I was still eager for the methotrexate each time it was due. At that point, my rheumatologist suggested increasing the dose of the methotrexate as the next step.  

Avoiding the Methotrexate Hangover 

Now, here’s where it gets a bit tricky. You may have heard of the infamous methotrexate hangover — the side effects that mimic the symptoms of a regular hangover, including nausea, headache, and fatigue. Unfortunately, I experience these pretty intensely after taking methotrexate, even though I take other medications to help ease the effects.  

To cope, I often find myself using regular hangover remedies like chugging water and eating a big carby breakfast. I’ve been hesitant to increase my methotrexate dose for years due to these hangover-like symptoms. However, given the wear-off and my rise in symptoms, it seemed like the time to bite the bullet and make the necessary adjustment.  

My doctor suggested increasing the dose from 15 mg to 20 mg, but we can split it into two doses for the week at 10 mg each, which will likely reduce the hangover effect. I thought this was genius. I felt so lucky to have a doctor who takes my concerns seriously, listens to my feedback and worries, and comes up with simple solutions. I hear from so many in the CreakyJoints community about being dismissed by doctors or not having a say in their treatment. I feel like I struck gold with my supportive and understanding rheumatologist.  

But Then There’s Insurance 

My health insurance did not like this idea. At first, I could only order a two-week supply from the specialty pharmacy, which was strange since I had always been able to order a month’s supply of medication. But I didn’t question it, as long as I was getting the medications I needed. 

However, about a month and a half later, my prescription got delayed. When I called the specialty pharmacy, they said they needed a new prior authorization. I’m still not exactly sure what happened, but now six weeks have passed and I am spending four hours per week on the phone trying to get my methotrexate. I finally learned (after begging a phone representative to help me figure it out) that the way they were processing the claim exceeded the limit on the prescription. They were adding up all the doses for the month, which made it appear as if it exceeded the 10mg prescription limit. What should have been simple math turned into a complicated mess.  

A Daunting Task 

I thought we finally had the answers, and my doctor could submit the quantity prior authorization they asked for, but there are still issues. My doctor messaged me, asking if I am open to trying vial and syringe to create the split doses at home instead of using the prefilled pen. I froze when I saw this message. I’ve been on biologics since 2016, so you can do the math on how many injections I’ve had to do. Why did this intimidate me so much? There’s something about the vial and syringe that feels like a very medial and traumatic way to take my medication. Coping with the impact of doing injections three times a week is already a challenge, and adding this new element makes me feel like the perpetually “sick kid” all over again.  

Taking the Power Back  

Sometimes I feel like a pro at chronic illness. I work at the Global Health Living Foundation/CreakyJoints, I have education in public health, and I have friends with my conditions who I can talk to. I know it all, right? But then there are moments like this, when suddenly, insurance starts dictating how I experience my chronic illness, and I feel like I’ve lost all power. I seem to have little choice but to give in to the demands of the insurance, especially when my symptoms worsen each week. 

So, to take that power back, with teary eyes I opened up my computer to start writing. First, I replied to my doctor, telling her I am willing to try the vial and syringe just to put an end to this insurance battle. It has been six weeks without the methotrexate, and I wow can I feel the effects of being under-treated.  

Next, I began writing this essay in hope that it will help me process what’s happening. While I wish no one else had to go through these insurance battles either, I know it’s the reality of taking these medications. So, I hope that writing about my struggle will bring comfort to someone else dealing with a similar situation.   

Treatment Day Rituals 

So now, as I wait to see what happens next, I’m pondering how I can make the vial and syringe less scary.  

  • Continue to embrace my injection-day rituals: I will treat myself to a sweet treat, take a relaxing bath, and watch a favorite show. I’ll make sure self-care is the main focus of the day. 
  • Hydrate: I’ve noticed that drinking plenty of water really helps with the side effects, so I’ll be sure to stay well-hydrated. 
  • Lean on support: I will reach out to my friends with chronic illness, seeking their advice and commiserating over the feeling of not being in control.
  • Count down: To reduce hesitation, I’ll stick with my practice of counting down from five to do my injection while also focusing on deep breathing. 
  • Remember it’s okay to not be okay: I will remind myself of a recent article titled “It’s Okay to be Okay” written by patient advocate Angie Ebba. I will remind myself that it’s okay to feel uncomfortable from this change and even though a vial/syringe may not be a big deal to someone else, it is okay if it is for me.
  • Keep a log of how I’m feeling: I will keep track my experiences and emotions and be honest with by doctor if I find this method too challenging and we need to try other options. 

Be a More Proactive Patient with ArthritisPower

ArthritisPower is a patient-led, patient-centered research registry for joint, bone, and inflammatory skin conditions. You can participate in voluntary research studies about your health conditions and use the app to track your symptoms, disease activity, and medications — and share with your doctor. Learn more and sign up here.

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