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.
Jump to:
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.
August 30, 2021 January 18, 2022
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.
What's next?
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.
Ellen Beltz
Bravo Laur!
lovecheflaura
Thank you, Ellen!
Mary
Way to go Laura!
lovecheflaura
Thank you, Mary!
Nicky
I have just come across your blog and website . I suffer from Hasimoto for 20 yrs and zero negative arthritis for 3 yrs .Am on hydroxychloroquine and thyroxine . Methotrexate didn’t help me . Would love to support this naturally so any advice would be welcome !
lovecheflaura
Hey Nicky! I'm sorry to hear about the medications. It can be a trial and error process. I have lots of resources on my page and of course encourage a gluten-free and dairy-free diet.
Sarah
I have been taking Methotrexate for several years after being diagnosed with Psoriatic Arthritis. It has worked well for me and even though there are other meds out there and now the infusions I have stuck with the pills. I take 5 pills once a week. Never suffered hair loss or had any side effects from it. I have lab work every 3 months to check on my liver.
Thank you for sharing.
Sarah
lovecheflaura
I'm so happy to hear it's working for you. It feels so good to have relief and especially when that relief comes with little to no side effects. Thank you for sharing, Sarah!
Anne
Hi Thank you for being so brave. I have RA and am so scared of the medicine I have not started anything. May I ask what type of imaging showed your neck inflammation? I too am having issues with my cervical spine. I am sending healing thoughts your way. Again you are very brave, thanks for sharing your story.
Anne
lovecheflaura
Hi Anne, I completely understand your reservations about starting medication. I ultimately went off methotrexate because of the side effects I was experiencing. I felt sicker on it than I did off it. I had no imaging show damage to my neck. I woke up with neck pain and could feel physical inflammation. As of recently, I have taken some more drastic steps in my diet that have led me to find relief. I hope you can find relief soon. Please know you are not alone on this journey ❤️
anne
Hi Laura,
May I ask what added steps to your diet you have taken, because I want to stay off medication. Thank you.
Anne
Elisabeth
In the beginning, I didn't want medicine either. So I got steroids injections in my joints (hurt like hell). But I realized I couldn't keep doing that. My doctor wanted to give me MTX, but I was trying to get pregnant at this time, so it was not a good solution. So I got salazopyrin entabs, which worked great in the first couple of years. It was like getting my life back, after being sick for years. But then I got some infection and really sick and my rheumatoid arthritis went crazy. I tried steroids injections and pills again, but I had a allergic reactions to it and it made things even worse. So I got an over max dose of salazopyrin and malaria pills. It helped, but still not really good. I went like this for years, and I have now big changes all over my body and my fingers and hands and wrists and feet full of bumps, similar to what you have. Now I have been approved to start on biological medicine and I am scared 😟 and worried. I will have to go to the hospital every other week. I won't be able to travel or have freedom, because I need to go to the hospital all the time. Sometimes I think, I can't handle it anymore.
lovecheflaura
Elisabeth, I am so sorry your are going through this. Continue to research, talk to your doctors, and I hope you find something that works for you. I have found great relief with the carnivore diet and taking cold dips. Hang in there!
Joanne Dosh
Thank you for all the info, my husband has recently found that he has RA ! God's Blessings to all of you!
cheeflo
There are some biologics that you can learn to self-inject at home. Ask your doctor about it. It's easy ... I did it for years. I go for monthly infusions of Actemra now because my Medicare drug plan won't pay for the prescription, but Medicare will pay for the treatment (go figure). The anticipation can be unnerving. You will find that it is easier than it sounds. After a time, the choice of biologic and the frequency may change depending on how you respond. I hope it goes well for you.
Joanne Dosh
Thank you for all the info, my husband has recently found that he has RA ! God's Blessings to all of you!
cheeflo
I don't want to rain on your parade, but I must tell you that you will need to come to terms with the reality of RA. It's not going away. It will likely progress anyway even as you develop your treatment regimen. DMARDs will help slow and minimize the progression, but will not stop it. Your body will not heal. You will always wonder how your day is going to be ... some days are good, some aren't so good. But you can heal your thinking, lose your fear, and learn to accept and play the hand you've been dealt.
I understand your concerns about the medications, but the trade-off is worthwhile. Do not shut down your options. It can take some time to find the treatment regimen that works for you. After twenty years, I'm not taking methotrexate anymore, but I am on a monthly infusion of Actemra, and I take an NSAID, a muscle relaxer, and a narcotic pain reliever twice a day. It works for me.
Learn everything you can. Ask for help when you need it. Try to stay buoyant, because it's easy to fall into despair. The really hard part is choosing to carry on.
lovecheflaura
Hi there, I appreciate you leaving a comment on my blog article. I'm so sorry to hear you have been suffering with your disease. This is not an easy path and there's no one size fits all to how to live while managing. I have been finding incredible relief with apitherapy and was recently diagnosed with lymes disease. Finally have a root cause to my disease. I hope you continue to heal and find relief from your pain.
Leanna
I just came across your blog in search for any different lifestyle method to help cope with RA. I was diagnosed 3 years ago, failed Plaquenil with an allergic reaction, couldn’t take methotrexate yet because we were family planning. They put me on Cimzia (a biologic) and it was amazing! Until it wasn’t. I had my first child last year and after I was finished breast feeding (and several flares later showing the Cimzia was no longer working) , I started on methotrexate. I had such severe side effects (and felt like I was dying from the inside out) for almost 12 weeks we decided to discontinue it. Now I’m left with the decision to switch to infusion biologics. I’ve been doing cold water therapy and noticing a difference with my mental state but not my body. Just getting discouraged since I’m not even 40 yet and used to be extremely active until the RA hit.