The decision to take medication for any chronic illness is personal and should be made with a licensed physician. This is my story and why I started medication for my rheumatoid arthritis. I am choosing to share to inspire conversations between patients and physicians. If you are seeking medical advice, please see a physician. You may read my entire disclaimer here.
I will never forget the pain I felt for nearly six weeks before being diagnosed with rheumatoid arthritis. During that time, the thought of being diagnosed with another autoimmune disease never crossed my mind. I thought my pain was expected since I had just given birth to my son, not even four months prior. Perhaps having to do with the hormone changes. I thought I was overworking my body when I should have been resting.
I will never forget the lack of care and respect at my first rheumatologist appointment and being laughed at for wanting to make lifestyle changes, such as changing my diet. When I asked about other potential diagnoses, the two physicians left and talked poorly about me behind what they thought was a well-insulated door. I will never forget that feeling I had leaving that appointment and the determination and will to prove them wrong. At that moment, I decided to tackle my new illness holistically, and I vowed never to take poisonous drugs. But then something changed. A lot changed.
If you had asked me in June 2019 if I would be where I am today, I would have given you a firm no way. I was set treating my rheumatoid arthritis holistically. Unfortunately, that mindset, being stubborn and proving someone wrong, never works out in the end. As humans, we need to be fluid. We need to ride the waves and be okay moving and shifting. I learned this and am still learning the many lessons taught in the waves when I practice cold water therapy. Who knew the timing of me swimming in cold water would prepare me for this next step in my healing journey.
Why I started medication for my rheumatoid arthritis
At the end of December 2021, I completed an x-ray on both hands, wrists, ankles, and feet. The radiologist discovered permanent damage and erosion that I will never be able to fix on three joints in each hand and three joints in each foot. Medication won't be able to fix it. A few days after my X-rays, I discovered a few small cyst-like bumps starting on my right wrist. These are signs of disease progression and changes in the body. My new rheumatologist warned me that the cysts could attach to a tendon, cause tendon rupture, and lose the ability to use my ring and pinky finger. The thought of not being able to help tie my daughter's shoelaces, hold a chef's knife, or be able to perform daily activities, which could have been avoided by taking medication, made my stomach hurt.
Around the same time as my x-ray, I started to wake up in the mornings with a stiff neck. The pain is different from sleeping on your neck wrong or using too fluffy a pillow. It was deep in my neck. I would still be able to move my head, but the range of motion was limiting. I discovered that pain was in the atlantoaxial and atlanto-occipital joints. These two joints are in the cervical spine and lay dangerously close to the brain stem. Because of the location, any inflammation and swelling need to be treated as soon as possible.
This was one of the newest signs of disease progression and, honestly, quite scary. I decided I couldn't wait for the next wave of new symptoms to start, and these three significant changes, the x-ray results, stiff neck, and cysts, were enough for me to take a step back and say, okay, it is time for help. These were the reasons why I started medication for my rheumatoid arthritis.
What is methotrexate?
My rheumatologist gave me the run-down on the types of medication for rheumatoid arthritis. I went into my appointment, and I remember telling my mother that if she prescribes methotrexate, I'm not taking it. Of course, as the appointment went on, my rheumatologist came to the discussion of methotrexate and how my symptoms are advanced enough that I need to take it. I had flashbacks of my first rheumatology appointment, and I had this wave of stubbornness come over me- I didn't want to take it. Thankfully, my mom was with me at the appointment and stepped in when I said I wanted another option. At first, I was upset but then, I remembered my lessons from the water and told myself I needed to be flexible and flow with the changes. I walked out with a methotrexate prescription.
At this point, I'm sure you're wondering why I was so hesitant to take it. Methotrexate is a DMARD, a disease-modifying anti-rheumatic drug, and is considered "the "gold standard" of "RA medications and it is usually prescribed on the onset of symptoms. Methotrexate is also a chemotherapy drug. In high doses, typically 50 or more times the dosage of what a RA patient takes, it can kill cancer cells. Even though my prescription is a relatively low dose, I have been warned of the immediate side effects such as fatigue, headache, and vomiting. Some of the long-term side effects include mouth sores, losing my hair, lung inflammation, kidney failure, and liver failure.
Thankfully, science has evolved so much in the past 50 years, and the options for medications for rheumatoid arthritis are growing. The majority of medications on the market today can alter the progression of the disease allowing patients to live a happy and pain-free life, including methotrexate.
How am I accepting this new chapter?
With lots of prayers. Also, I visualize myself healing and the medicine working well for me. I know some of you who are reading this think I'm pretty dramatic, and that's okay. We all have our things. For me, medication isn't of the 'things' that I take lightly. I am taking this medication with as much of a positive outlook as possible. I thank God I have access to healthcare the ability to afford medication, and I am thanking the medication for helping me and pushing me over the hump that I can't do alone. I'm approaching this new chapter with gratitude, and as I said above, I'm fluid and flowing with the changes. That's all I can do.
Why I am excited?
Waking up pain-free every day, talking freely, and not worrying about saying poor comments about my body in front of my children is what I'm most excited about. I also look forward to not having my day evolve around being sick or having anxiety when I sleep at night, not knowing how I will feel the following day.
I will be writing a series on my experience with methotrexate for rheumatoid arthritis. I will be sharing my journey along the way. In my next post, I will go into more detail on what exactly methotrexate is, what has to change in my life now that I take it and how well the medicine is working.
Do you take medication for your autoimmune disease? What led you to that decision? Was it an easy one or relatively difficult? Are you on methotrexate and have any words of advice for a newbie? I would love to know in the comments below.