Living with rheumatoid arthritis is tough, with many challenges. One big challenge is finding the right treatment. A lot of people ask me what medications I’m taking. The question may seem straightforward, but the answer is anything but.
Each case of rheumatoid arthritis differs vastly, meaning what works for one person may not for another. I often refer to this as the “arthritic rule of thumb” — no one-size-fits-all solution exists for treating this condition.
Notably, everyone’s arthritis differs in its severity. Rheumatoid arthritis ranges from mild to severe, with each level necessitating a different treatment approach. My rheumatoid arthritis is on the moderate to severe side — seropositive — which also means I have a lesser chance of achieving remission and a reduced responsiveness to drugs compared to someone with seronegative rheumatoid arthritis.
So, while I can share specifics about my current medication, it’s important to remember that the journey toward finding the right treatment is often complex and individual.
The Beginning of My Medication Journey
The day I was told I’d need to rely on medication for the rest of my life, I was filled with fear. Not only was I grappling with my diagnosis, but also with the reality of taking medication every day. Before this, I had never needed medication for an illness on an ongoing basis.
Previously, a brief doctor’s visit and a week-long prescription were usually enough to clear up whatever was ailing me and restore my health. But things were different now. I was facing a life where I would be dependent on medication for the rest of my life. Needless to say, it was a bitter pill to swallow.
At the time of my diagnosis in 2015, I knew very little about rheumatoid arthritis, autoimmune diseases, and medications. But over time, thanks to my own experiences, active participation in arthritis research, personal learning, and listening to others’ experiences, I’ve learned a lot about these topics.
The Shock: A Common but Serious Disease
I wasn’t oblivious to arthritis, but I was not aware of the severity of arthritis. Before turning 30, I never imagined needing to worry about the diseases often mentioned in pharmaceutical commercials, with their daunting list of side effects.
When I watched those advertisements, I wasn’t focused on the disease, rather on the disconcerting sight of people appearing happy and carefree while discussing side effects like diarrhea, vomiting, cancer, stroke, and even death.
Now I understand that pharmaceutical companies must list all potential severe side effect reported, even those reported by just 1 in 100,000. It’s an important fact to consider when taking any medication and reading that long list of side effects.
A Story of Medication Improvement
My aunt was diagnosed with rheumatoid arthritis several decades ago, back when gold was used as a treatment option. Unfortunately, the disease caused her to become wheelchair-bound and suffer from hand deformities — a common symptom of RA. She also endured comorbidities like diabetes and heart disease.
Tragically, she passed away due to the disease complications (heart disease) the same week I was diagnosed with RA. Naturally, I feared that I would experience a similar fate.
Thankfully, advances in medication, especially biologics, have helped make what happened to my aunt less common. While treatment is not a perfect cure, it has greatly helped control this aggressive and progressive disease. Treatment for RA now also aims to reduce heart disease risk factors, helping to prevent people with RA from developing heart disease.
The Goal Is Remission, But What Is Remission?
Remission in rheumatoid arthritis is a state where the disease is well-controlled and there is no active inflammation. The goal for any patient with rheumatoid arthritis is to reach this sate. There are different criteria used to define remission, but typically, it means fewer symptoms, no signs of inflammation, and no joint damage for at least six months.
Early diagnosis and prompt treatment can significantly increase the chances of achieving remission. Unfortunately, it’s important to note that not all patients with rheumatoid arthritis achieve remission, even with effective treatment.
Personally, I have come close to remission but fell short due to trauma and stress. It’s crucial to point out that during this period, I did not just rely on medication. I was regularly exercising, eating healthy, reducing stress, and giving myself adequate rest.
Rheumatoid arthritis is a progressive disease, so over time it does get worse, another tough pill to swallow.
My comorbidities, such as fibromyalgia, depression, anxiety, and osteoarthritis, complicate my journey toward remission. The lengthy duration it took for my diagnosis further adds to these challenges.
Location Makes a Difference
It is worth noting that rheumatologists sometimes tailor RA treatments based on their location or personal drug preferences. For instance, my rheumatologist avoids prescribing corticosteroids like prednisone due to their long-term effects. Painkillers, or analgesics, are also typically avoided because of the risk of dependency, with the expectation that our other medications should provide sufficient pain relief.
The range of available RA treatments can vary greatly depending on whether one lives in an urban, suburban, or rural location. Insurance coverage also significantly influences treatment options. I am fortunate enough to have both provincial and federal disability coverage, which usually covers the cost of my pricey medications. However, in Canada, the medication guidelines tend to emphasize starting with more affordable options, such as Disease-Modifying Anti-Rheumatic Drugs (DMARDs) and Nonsteroidal Anti-Inflammatory Drugs (NSAIDs), even for patients who may need stronger medication. This approach can be unfortunate, as timely and effective treatment is critical for maintaining quality of life for those with RA.
While no blood test currently exists to determine precisely which RA medication a patient might need, the field of precision medicine is actively being studied. It promises to be a major breakthrough when it becomes a reality.
Why I Switched My Medication
There are various reasons for stopping a medication, with side effects and effectiveness being the primary ones. It’s worth noting that these side effects are temporary and disappear after a few weeks once the body adjusts to the new medication. However, if they persist, it’s crucial to consult with your doctor.
Main side effects why I switched medication:
- Nausea and vomiting
- Anxiety, depression, and suicidal thoughts
- Hair loss
- Stomach pain
Other reasons I have stopped a medication:
- After awhile they did not give me enough relief
The Medication Journey Is Not Always Easy
My first RA medications were methotrexate and naproxen, which are standard treatments. However, neither provided relief, and I experienced uncomfortable side effects, including hair loss from methotrexate, which significantly impacted my self-esteem. Despite my rheumatologist’s prediction that sulfasalazine and leflunomide would also be ineffective, the drug guidelines required me to try them.
After a year of unsuccessful drug trials, my rheumatologist initiated the process for me to start biologics. This year was exceptionally difficult due to both my disease progression and the loss I was grieving. I also endured uncomfortable side effects from medications that weren’t providing me any relief.
Overwhelmed, I went into denial.
For six months, I neglected my disease and the necessary medications out of frustration with the medication process and under the influence of misguided opinions suggesting that my medications were worsening my condition and overall health.
Eventually, the pain from my rheumatoid arthritis became unbearable, compelling me to return to my doctor and restart a treatment plan. She gently explained that many patients become frightened and discontinue treatment — I wasn’t alone in my concerns. Unfortunately, not all return for further treatment.
Medications Are a Personal Choice
“How can you take those medications if they have all those side effects or risks?” is a question I often get from those who lack firsthand experience with this disease.
I take medication to manage my RA because without it, I cannot function. Leaving RA untreated heightens the risk of permanent disability, extensive organ involvement, and severe comorbidities.
The decision on how to treat your rheumatoid arthritis ultimately lies with you. However, before making any decisions, it’s critical to educate yourself using credible sources about the disease and the consequences of leaving it untreated. Rheumatoid arthritis is a systemic autoimmune disease, which means it involves much more than joint pain. It can affect multiple parts of the body, including the heart, lungs, skin, eyes, and more.
I opted for the medication route because medication helps significantly with the quality of my life living with rheumatoid arthritis.
I believe a holistic approach to RA is also important, but again you have to do your research because some holistic methods can be harmful for RA patients. For example, because individuals with RA have an overactive immune system, we should avoid immune-boosting supplements and foods like echinacea, ginseng, and spirulina, as well as grapefruit due to their interactions with many medications. Having an autoimmune disease like rheumatoid arthritis means we already have an active immune system and we don’t need to stimulate it further. We need to suppress it.
Biologics Changed My Life — But Not Right Away
My first biologic was self injection. It helped control my inflammation, but I had quite a few side effects, including nausea, dizziness, and a never-ending cold. Being my first biologic, I was not fully aware of how they would impact the cold and flu season, and how important vaccines could be for someone in my situation.
Next, my rheumatologist prescribed a biologic known for milder side effects, which was delivered in a 30-minute infusion. However, I developed a severe pelvic infection, which nearly caused me to go septic. This was due to a misplaced Mirena IUD that had caused a wound, which led to infection. Given my compromised immune system and the use of biologics, things escalated quickly. I learned the hard way that infections and biologics can be a dangerous mix.
This particular biologic failed to alleviate the flare triggered by the infection, so my doctor prescribed a different biologic, which seemed better suited for my lifestyle and had fewer side effects. This infusion was delivered once a month and lasted an hour. I was prescribed the infusion version because it provides a stronger dose than the self-injection form.
I had minimal side effects with this biologic, and it was effective in controlling my inflammation. It even brought me close to remission. I remained on this biologic for four years until a traumatic event threw me into a flare. Physical and emotional trauma, as well as stress, can trigger an immune response and cause our medications to fail us.
My current biologic is in pill form, taken once daily. It has reduced my need for naps and lessened my pain, but it has been difficult to getting back to the same way active level and feeling I had on my last biologic. This is due to the process of healing from the trauma and coming to terms with the the progression of my RA.
How I Tell if My Medication Is Working
- I’ve given it the appropriate amount of time it takes to see a difference. This can be three to six months for some medications. I suggest tracking your symptoms and side effects with an app to monitor your drug effectiveness.
- I require less naps or no naps in the day.
- I have a reduction in joint swelling and pain.
- I can handle more in a day, like being on my feet more or using my hands to do more.
- My sleep improves, and I do not require going to bed earlier than 9 pm.
- Regular lab monitoring (bloodwork) shows my inflammation is low.
How I Tell if My Medication Is Not Working
- I can handle less.
- I need frequent naps.
- Pain happens early in the day or for no reason.
- Inflammatory markers in my monthly bloodwork.
What You Should Know About Rheumatoid Arthritis Medications
- What works for one may not work for another.
- It’s ok to be afraid of medications and needles, but they may help you.
- Early treatment for RA has a better outcome.
- Comorbidities might make you think your RA meds aren’t working, advocate for more testing in areas of your pain. Fibromyalgia and osteoarthritis cause a lot of similar pain and fatigue as RA. Anxiety and depression have physical symptoms and change our perception of pain. In other words, they make our RA pain worse.
- Understand that irreversible joint damage can cause pain even when your labs come back fine.
- Research has shown that regular exercise makes our medications work better.
- You can not only rely on medications or just your rheumatologist. You have to learn to self advocate and make adequate lifestyle changes.
- Never say you failed the drug — the drug failed you.
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.