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in Health · September 4, 2015

Is Arthritis a Big Deal?

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.

Is Arthritis a Big Deal?

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.
Inflammatory arthritis can spread to the organs

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).

Living with Arthritis

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.

Kate Mitchell

Kate Mitchell is a blogger, chronic illness patient, and advocate who helps people understand chronic illness and helps chronic illness patients live their best lives.

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Comments

  1. Seersucker Sass says

    September 4, 2015 at 1:48 pm

    I can’t believe that someone would tell you arthritis isn’t a big deal! I went to the doctor for months trying to get some kind of treatment for my joint pain, which was when they found that I had cancer. (They think it was caused by the infusion I take for my chronic illness.) I hope that your body adjusts quickly and pleasantly to your new doses of medication. I’ll be praying for you! Please remember that you are not alone!

    XX, SS || A Little Seersucker Sass

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    • Kate Mitchell says

      September 10, 2015 at 6:45 pm

      I know! I was livid. Thank you so much for the kind words. I’m glad that they were able to find the cancer! My hope is that this medication gives me the little jump that I need. Thank you for the love!

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  2. BlueWren says

    September 29, 2015 at 11:19 am

    Very, very well-written, thoughtful, and accurate account of how PsA and RD works in the body, and how it and the drugs that help control it (sometimes) affect our lives. Wow, Kate! You’re more than (almost) great! 🙂

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    • Kate Mitchell says

      October 13, 2015 at 6:17 pm

      Thank you so much! I’m glad to hear that – it makes me feel like I’m helping people to hear those sorts of things 🙂

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  3. Shellyyum says

    February 21, 2016 at 3:46 pm

    hugs, it’s what we have to do in order to manage the pain and survive. I know I have to take 8 different meds with various side effects and most are very dangerous owing to the fact they mess with the brain. Like mental illness, physical illness is just as important and worth recognizing for the fact that it can harm someone. Arthritis is a big deal and bigger than I imagined it to be, so thank you for being brave and posting this. All sorts of illnesses should be recognized especially arthritis. You are braver than you realize, you know?

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  4. Cherish. says

    February 21, 2016 at 6:53 pm

    58 affected joints?! Oh my goodness I am so sorry to hear that. I, however, LOVE that you are using it as a chance to educate the public on healthcare!!

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Trackbacks

  1. Yes! Arthritis Is a Big Deal! - My Front Porch Life says:
    September 10, 2015 at 10:29 am

    […] First, this post was inspired by Kate at https://katethealmostgreat.com/.  You can read the original article here. […]

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  2. Holistic Hair Products That Work says:
    September 16, 2015 at 8:00 am

    […] usually it’s more like I deal with keeping it healthy while I’m on medications. Since I started Methotrexate again last week, I’ve been losing significantly more hair than usual. The last time I was on it, I had to cut […]

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  3. Arthritis Info: Everything You Absolutely Need To Know says:
    May 4, 2016 at 8:00 am

    […] It’s just related to your joints, right? Nope! Autoimmune arthritis can spread to the organs and complications from arthritis can lead to death. You can read much more about how arthritis can be a big deal in this post. […]

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  4. 8 Ways To Help Arthritis Sufferers | Kate the (Almost) Great says:
    May 9, 2016 at 8:00 am

    […] Educate yourself – People believing incorrect things is annoying (or sometimes hurtful) enough as it is, but when it comes from someone close – a friend, family member, etc. – it hurts much worse. If you believe that arthritis isn’t a big deal and the person with it is exaggerating, please read this post. […]

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  5. Kate the (Almost) Great | Boston Lifestyle Blog - What's the Value of the Affordable Care Act? | Kate the (Almost) Great says:
    February 21, 2017 at 8:00 am

    […] medical treatments, which means extreme high pain (and potentially my arthritis going after organs because that’s a thing). Between physically living as well as having any kind of quality of life, my life depends on my […]

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  6. Kate the (Almost) Great | Boston Lifestyle Blog - Problems from My Inflammatory Arthritis + How To Deal with Them says:
    February 26, 2018 at 8:01 am

    […] people but don’t have the energy to do it yourself, you can share these posts with them: Is Arthritis a Big Deal? and What You Need To Know about […]

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Having decades-long health problems sometimes mean Having decades-long health problems sometimes means coming across something in your health history that you completely forgot about⁣
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Here are some ways I practice self care, aka talki Here are some ways I practice self care, aka talking care of myself AND who I am as a person separate from illness⁣
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On the one hand, you should always believe what pe On the one hand, you should always believe what people tell you about their bodies.⁣
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On the other hand, I’ve had so much ridiculous and unconnected health things happen that I do understand why people might not believe me.⁣
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Last week, I talked about how it surprised me how Last week, I talked about how it surprised me how systemic autoimmune arthritis can be. But something else that surprised me was how much pain can be caused by small things.⁣
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In this picture, I was getting ready to have an MRI on my knee. It has been bothering me a fair amount the last 6+ months, so I'm trying to do something about that. ⁣
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Unsurprisingly, some of the tissue is damaged, but it's not bad. What's probably causing it to bother me so much is a teeny tiny cyst. ⁣
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Baker's cysts are a type of cyst in the knee that are generally caused by arthritis. But having a cyst in my knee means that it's causing pressure on that damaged tissue. ⁣
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If I met my newly diagnosed self for coffee ... ⁣
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I tell her how things would get worse before they got better. ⁣
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I'd tell her to stop eating gluten, dairy, corn, soy, and eggs immediately (although that would have been a lot harder in 2010, more than it even is now). ⁣
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I'd tell her that she still needs to keep advocating for herself. ⁣
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I'd tell her that having a diagnosis unfortunately doesn't mean everything automatically falls into place. ⁣
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I'd tell her that she'll develop many more illnesses but her quality of life will actually get significantly better. ⁣
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I'd tell her that she would eventually have to get her right foot fixed, although she does expect that.⁣
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I'd tell her that using a cane is not a sign of failure, but a tool to make life better.⁣
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(I did a sort of tongue-in-cheek post about this a while ago and thought I'd post a more serious one).⁣
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The thing that surprised me the most about autoimm The thing that surprised me the most about autoimmune arthritis is how systemic it is. ⁣
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Like with most things, it's one thing to know the fact and it's something else to experience it. ⁣
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Yes, my joints are affected (a lot). ⁣
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But I've had enough serious infections thats I have to see an immunologist because we need to be aware of my antibodies and I sometimes need help recovering from illnesses. ⁣
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And, yes, I see pulmonology because of my asthma, but we also have to keep an eye out on developing rheumatoid nodules in my lungs. (So far so good!)⁣
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Not to mention that, when I developed POTS, the hospital admitted me to run every heart test to make sure that, at 26, I wasn't experiencing heart failure. ⁣
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Plus, when I developed endometriosis, I also went through a number of GI tests because one theory was that I had ulcerative colitis. ⁣
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Anyway, RA is so much more than "just" joints. If it wasn't, I wouldn't have to kill my immune system every 3 months like I am in this picture.⁣
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I’m Kate, a chronic illness patient and advocate sharing what my life is like with 7+ chronic illnesses. Follow me for more and check out my blog at katethealmostgreat.com⁣⁣⁣⁣⁣⁣
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