Happy Arthritis Awareness Month! If you follow me on Instagram, you’ve probably already seen me sharing information and personal anecdotes in honor of the month in my stories. I thought I would get a little personal today and share how I treat my RA and how I got there. I’m doing this to demonstrate in detail how messed up the finding-medication-that-works-for-you process is (trial and error!), to help bust the myth that you just need to take Advil to automatically feel better, and more.
Disclaimer: I’m not a medical professional. I’m merely explaining what I know about rheumatoid arthritis treatment and what my medical team has done for me.
At the beginning – I was officially diagnosed with autoimmune arthritis (originally psoriatic, but later changed to RA) in July of 2010. I had been on the waiting list for rheumatology for a few months, and I got off of it when I woke up one morning and couldn’t open my mouth more than 8 mm. I started off on a small pill dose of methotrexate, a form of chemotherapy. Methotrexate is in a class of medications called Disease Modifying Anti-Rheumatic Drugs, or DMARDS. They work to calm the immune system. Additionally, I was still on 500 mg of naproxen – aka Aleve – twice a day, which my ankle surgeon put me on after my ankle surgery in January of 2009. (Fun fact: this was the same surgery that I just had, only it was in my left ankle. It was also when they confirmed that I had arthritis. We just thought it was osteoarthritis, which tarsal coalitions can cause.) Additionally, when I had flares, I was put on a dose of prednisone. Prednisone is a corticosteroid that is used to reduce RA symptoms and inflammation, but they don’t go after the disease itself.
I tried this for a couple of months. After that time period, the dose of methotrexate that I was on was clearly not doing much. We doubled it. While I felt few side effects on the lower dose, on the higher one, I felt rather crummy. Methotrexate is taken weekly, and like many chemotherapies, it made me very nauseous for a few days. To combat this, I started taking folic acid every day. Eventually, even that pill dose wasn’t doing enough, so I switched to weekly injections. Throughout all of this, America was in a methotrexate shortage. Filling my prescription became a very nerve-wracking process, as I sometimes had to get it filled at other pharmacies, but I lived in the dorms at college and didn’t have a car. Luckily, I was able to turn to co-workers and friends who did have one so I could go pick up my medication.
Another problem I dealt with was that I got sick all. the. time. Because rheumatoid arthritis is an autoimmune disease, my medication(s) suppressed my immune system. And as I lived in a dorm and was an RA, I felt like I was constantly sick. And because my medications were immunosuppressants, if I got sick, I had to go off of them.What finding a treatment for rheumatoid arthritis can look like. Click To Tweet
Turning to biologics – By the time my summer break rolled around in 2011, it was very clear that methotrexate alone wasn’t doing much of anything. This meant that it was time to turn to biologics. According to the Arthritis Foundation, “These drugs are a subset of DMARDs. Biologics may work more quickly than traditional DMARDs, and are injected or given by infusion in a doctor’s office. Because they target specific steps in the inflammatory process, they don’t wipe out the entire immune response as some other RA treatments do. In many people with RA, a biologic can slow, modify or stop the disease – even when other treatments haven’t helped much” (x). Examples of biologics include Humira, Enbrel, and Orencia, which I all tried. Basically, all the medications you see advertised on TV. These are injections that I gave myself once a week, so I was actually giving myself two injections a week for this time period.
I want to make a quick note here: for many RA patients, this is where they can sit for years. For many, these are the medications that work for them. I’m weird – or, as my rheumatologist has said, “You’ve proven to be a … difficult case.” – so for me, this round was not successful.
Triple therapy – We then turned to a treatment that felt (kinda) like going backwards. After failing at various biologics, I started triple therapy, which was sulfasalazine (a pill), Plaquenil (a pill), and methotrexate (an injection). It felt like going backwards because it was mostly pills instead of mostly injections. My rheumatologist is very into data and studies, and some were coming out that saw success in patients for whom biologics didn’t work. I gave this a try, and it was a very welcome change.
Another note: for most treatments, RA patients have to test them for 3-4 months before they can be declared as working or not working. This is very frustrating as a patient who didn’t respond to these treatments, but it’s unfortunately required. Due to going off of medications when I got sick – and then having to restart the whole 3-4 month process – it took me a year and a half from when I started biologics to when I started on my infusion, which I’ll get to now.
Onto infusions – After this point, my rheumatologist came to the decision that I don’t respond to TNF-inhibitors. This refers to how these medications work. Humira, for example, works by inhibiting the TNF. Given that I didn’t respond at all to any of these, my rheumatologist figured that it didn’t make sense for me to try Remicade infusions because Remicade is a TNF-inhibitor. Instead, we turned to a B-cell-inhibitor: Rituxan. As you’ve probably figured out, Rituxan works by inhibiting B-cells. I started this in December 2012 and it was almost a miracle drug.
Cutting back – Once the Rituxan kicked in, my rheumatologist gave me the okay to stop methotrexate. By March 2013, the side effects of methotrexate were so terrible that I basically had the stomach flu for 4 days a week every single week. My quality of life from methotrexate was much poorer than my quality of life while on Rituxan. From December 2012 to November 2014, I had two Rituxan infusions two weeks apart every six months. But what was happening was the Rituxan was running out at four-and-a-half months. From when it ran out to when the next infusion kicked in was over two months, meaning I was miserable for four months out of the year. To avoid this, we switched to one infusion every four months. This cut the time in between down to three weeks per infusion cycle, so it went down to one-and-a-half months in the entire year.
Going back – Things were okay (minus a knee surgery) from this time to late summer 2015. Then, my symptoms were causing enough problems that my rheumatologist wanted me to go back on methotrexate. Because of how bad my side effects were last time, I stayed on a low pill dose. And even then my symptoms were bad for two or so days a week! But methotrexate has the added bonus of making other treatments – aka Rituxan in my case – work better, so I gave it a shot.
Making changes – By early 2016, though, I still wasn’t doing as well as we wanted, so we decided to try something different. Like I mentioned, I was originally diagnosed with psoriatic arthritis. We wondered if that was what was going on after all, so I tried Stelara. Because Stelara is a T-cell-inhibitor, we weren’t sure how I was going to respond. Not only did it not work, but I also developed endometriosis in this time period. This essentially confirmed that I do have RA and not PsA, so I was able to restart Rituxan in June 2016. But I still wasn’t responding to my treatments as well as we wanted, so in early 2017, I switched from methotrexate to Arava. Arava is another DMARD, and studies show that it works just as well as methotrexate, if not better. Because of a wide variety of reasons (the main one being don’t take Lupron if you’re on Rituxan, kids), it took a while for use to see if it was working or not. In fall 2017, I increased my Arava dose. It’s definitely working, and I feel so grateful for that.
Currently – Currently, I take 1000 ml of Rituxan once every four months; 20 mg of Arava every day; 500 mg of naproxen a day; 12 mg of methylprednisolone, a stronger version of prednisone, every day; and 4,000 mg of sulfasalazine a day, in addition to other medications for my other chronic illnesses. But I’m still not responding to this as well as we would like. I’m focusing on the future. In the 8 years since I was diagnosed with arthritis, so many medical advancements and treatments have been discovered or approved. What will become available in the next 10? What about 20, or even 50? When I feel frustrated or down, this is what I focus on.
A final note: this post is entirely about medications and medications alone. I have made lifestyle changes. I have done a wide variety of things to treat my pain in addition to medications. Please do not comment with suggestions of that kind. I’ve been living with this diagnosis for almost 8 years and I have tried pretty much everything that is out there or my medical team and I have decided that it is not the right fit for me for any of a wide variety of reasons. Also, you shouldn’t be commenting with unsolicited medical advice anywhere on the Internet, and here are some questions to ask yourself before you ever do that (which you should not).
What rheumatoid arthritis treatments have you tried?
Like this post? Check out:
What You Need To Know about Arthritis, Beginner’s Guide: Seronegative Rheumatoid Arthritis, So Someone You Know Was Diagnosed with Inflammatory Arthritis, The Lifestyle Changes I Made for My Rheumatoid Arthritis