Last month, when I asked for people with chronic illness to share the ridiculous things that healthy people have said to them, the one that I heard over and over again was something along the lines of, “[illness] isn’t that bad. At least you don’t have cancer. Stop complaining.” This is one that I have heard multiple times, too. In fact, in 2013, I got an anonymous question on my Tumblr saying, “Arthritis isn’t a big deal. Stop complaining about it.” At first, I was furious. But then I realized that this was a wonderful learning opportunity for anyone who thinks that.
Arthritis is an autoimmune disease where the immune system attacks the joints, causing pain ranging from mild to excruciating and, if not managed, it permanently damages joints. A day with arthritis involves experiencing stiffness for a little while after waking up, feeling the exhaustion from being in pain, taking pills, and doing your day with pain. Some people have trouble dressing themselves because they can’t do buttons, or they can’t open jars or prescriptions, or they struggle to tie their shoes. Some people can’t walk more than a couple of blocks, and others can’t drive. Some struggle to get out of bed in the morning, whether because of how difficult it is or they are depressed because of their pain.
But its effects don’t stop there. Inflammatory arthritis can spread to the organs – that’s we call systemic – and can kill that way. And because it’s an autoimmune disease, the medications suppress the immune system, so it is much easier to get sick and much harder to get better. We’re the people who get pneumonia from a common cold. It can kill that way, too.
Let’s talk more about medications. Not only do most of them suppress the immune system, but they also have not-fun side effects. This ranges from potential bone damage if you’re on steroids long-term to feeling nauseated and everything in between. You have to choose between having a health stomach lining or being in extra pain. Or you choose between lower quality of life from medication side effects or lower quality of life from higher pain. How do you make these tough decisions?
And another thing about medications: many patients are on at least one type of chemotherapy. Methotrexate is an incredibly common treatment of inflammatory arthritis because it is a DMARD (disease modifying anti-rheumatic drug), meaning that it works against the disease itself and not just against the symptoms. The U.S. National Library of Medicine says, “Methotrexate is also used to treat certain types of cancer including cancers that begin in the tissues that form around a fertilized egg in the uterus, breast cancer, lung cancer, certain cancers of the head and neck, certain types of lymphoma, and leukemia (cancer that begins in the white blood cells” (Source). Oh, and if you want to know how serious this medication is without going to that site, check this out: “Some people who mistakenly took methotrexate once daily instead of once weekly experienced very severe side effects or died” (Source).
So why are we talking about this today? Because I’m going back on Methotrexate. Let’s back up a little so you get the whole picture.
When I was first diagnosed with psoriatic arthritis (my first diagnosis) in 2010, I had 58 joints affected. My rheumatologist immediately put me on an oral dose of Methotrexate. Over the next couple years, I tried 5 other treatments before finding a combination that worked: weekly injections of 1 cc of Methotrexate with 2 infusions of 1000 mL of Rituxan every 6 months. Web M.D. says, “Rituximab is used alone or with other medications to treat certain types of cancer (e.g., non-Hodgkin’s lymphoma, chronic lymphocytic leukemia)” (Source).
But once that combination started working, I decided to go off of the Methotrexate injections because the side effects were so awful. Long story short, I felt like I had the flu 3-4 days every single week. It just wasn’t worth it any more. My pain was still high – much better, but still high – and I felt miserable half the time.
I’m still on Rituxan infusions, but I now have 1 of 1000 mL ever 4 months, which reduces the amount of time without the infusion working. This is the first time ever that I’ve been on a working arthritis treatment without my knee dislocating and causing flares on a regular basis. But what I’ve found is that the Rituxan “alone” (aka with the 25 pills I take a day) isn’t doing the job well enough. While I don’t experience excruciating pain every day, I now have moderate pain in many, many places.
The pain everywhere isn’t anything new; like I said, I had 58 affected joints when I was diagnosed. But the pain in these “secondary” joints is higher now. It used to be excruciating knee pain with mild to moderate pain everywhere else. Having pain at a 4/10 is great, but having 50 joints be between 4/10 and 6/10 is not great.
At the end of the day, the studies show that Rituxan works better while the patient also takes Methotrexate. I refuse to ever go on the injection dose of Methotrexate again, but I can handle the pill form. My hope is that the side effects will be less on this dose, and that they will be manageable. If we can reduce either the number of joints that are affected or the pain levels in the joints that are currently affected, it will be worth it.
Once again, why should you avoid saying that arthritis isn’t a big deal? Because it’s an autoimmune disease that can make its sufferers miserable and because it or its side effects can kill. In order to reduce my pain and hopefully prevent further joint damage, I take 2 types of chemotherapy and take 25 pills a day (29 on Methotrexate days), and I’m not alone on taking chemotherapy or lots of pills. Oh, and my arthritis caused me to quit my job. So I dare you to tell me honestly that arthritis isn’t a big deal.