Methotrexate: Six Weeks & Counting

When I agreed to go back on Methotrexate back in April, I knew it would never be a long-term solution for me. I wanted to believe it could be successful, but I knew that whatever the degree of success it would always come with a price.

My experience with this drug is certainly not representative of most people’s. I know one woman who has been on it successfully for 18 years! I will be lucky if I make it to 18 weeks at this point. That’s actually a lie – I have no intention of being on this poison for 18 weeks. That’s one of the reasons being able to start Orencia was so crucial to my treatment plan: I simply don’t have the endurance to battle its side effects and still live the life I’ve set out to live.

I don’t know why I can’t tolerate it as well as so many others do, but the side effects have always crushed me. As a kid, my mother used to have to chase me around the house to inject me with my weekly dose. Every week I would try to bargain my way out of taking it – as if it were a punishment instead of a treatment. For years even the word “Methotrexate” would send chills down my spine as I remembered standing in the shower as clumps of my then waist length strawberry blonde hair collected in the drain.

But back in April I was just too tired to fight anymore. Physically tired from months of almost nonexistent sleep. Tired of the increasing pain and swelling in my shoulders, wrists and knees combined with almost constant chest pain. Mentally tired from the war being waged by my own body. So when Dr. A suggested it, I didn’t even balk. I reasoned with myself that it would be a short-term solution while we decided on which biologic drug to pursue next. I was never in it for the long haul.

The last six weeks have confirmed what I’ve known since I was 13 years old: the benefits of this drug will never outweigh the side effects for me. Ever. To a certain extent, I will choose pain instead taking Methotrexate.

I just can’t give up the things that make me ME, and it feels like Methotrexate takes them all. I might be able to deal with the stomach pain, nausea, vomiting, diarrhea (TMI be damned, I’m just keeping it real) and thinning hair, but it’s the loss of appetite and soul crushing fatigue that will never be worth it to me.

I love to cook. I own no less than 54 cookbooks which, until recently, could often be found spread across the kitchen table while I planned out grocery lists and menus for the week. Cooking, my kitchen – that is my happy place. I love food’s ability to nourish mind, body, and spirit. I approached weekly meal prep with the same passion reserved for hand rolling gnocchi and cooking down vegetable scraps for homemade vegetable broth. Whenever shit felt like it was falling apart, filling the refrigerator and freezer with homemade soups, sauces and dressings was my own form of therapy.

I took my first dose of Methotrexate on a Friday. The next meal I ate was the following Wednesday while the week’s produce started to wilt and turn in the crisper. Once the nausea and vomiting subsided, I found I had no appetite. None. These days eating feels like a chore. Something I do to satisfy the concerns of those around me, an item to check off my daily to-do list.

I find myself sleeping in later and later no longer possessing the energy (or the calories) to work out every morning. The pain I could battle through, but this kind fatigue is a new foe. Almost every morning I lay in bed contemplating calling in sick as I calculate how many PTO hours I have remaining. Eventually standing in front of the mirror, I notice my muscle tone dwindling. Months of work and sacrifice and commitment evaporated in a matter of weeks.

Screw that.

When my family and friends ask me how much longer I have to be on the Methotrexate, I generally quote them 6 weeks citing this weekend as the halfway point. This is assuming that my body starts to respond to the Orencia almost immediately, and, even if it doesn’t, I’ve already let Dr. A know of my plans to taper off the Methotrexate as soon as possible. I honestly expected a much bigger fight from her, but when I told her “I have no idea if it’s working. My joints hurt less, but that’s because I don’t do anything anymore. I don’t even go to yoga.” I think she finally got it. Even she knows yoga has always been my lifeline.

The last 6 weeks haven’t been all bad. I discovered Unbreakable Kimmy Schmidt on Netflix. I have revisited meditation with renewed vigor and have recommitted myself to my daily affirmations. I have reminded myself what it means to live gratefully even when it feels like I have nothing to feel grateful for. And Vin has reminded me what love means over and over again with every load of laundry, with every late night run to the 24 hour CVS, with every dish washed, with every meal cooked. My partner in the truest sense of the word.

With my first Orencia infusion now in the books, it’s a lot easier to look ahead to the day that I flush that bottle of little pink pills down the toilet. To the day that I close the door on Methotrexate for good.

7 Replies to “Methotrexate: Six Weeks & Counting”

  1. I am sending you prayers af healing & God’s grace. I am not sure I can ever go back on Methotrexate for these reasons and more so I am proud of what you’re having to endure so that you may better endure the Orencia. I have much faith in you through the determination you place in yourself:) Always here if you ever need a shoulder! 💕

  2. I’m so sorry that you’re experiencing. After 3 years on it, I stopped taking it once I started Rituxan and it kicked in. I explained to people that I essentially had the flu for 3-4 days a week, and even that seems to be tolerating it better than you have. I’m glad that your infusions started and I hope that you can say goodbye to it soon.

    1. Thanks, Kate! My experience is pretty much in line with my expectations (I was on it for ~3 years previously) so I’m not so much frustrated as I am just so SO tired! Despite how rough the last few weeks have been, I’m glad that I tried it again. Now that we know it’s not the best option for me, we can focus on moving forward with the Orencia + other meds. I’m positive I’m going to feel A LOT better in another 6 weeks!

  3. Part of the rules here in uk is that we have to be on mtx to be on a lot of the super drugs. I am intolerant to mtx but I wouldn’t have been able to try any other drugs without it. I’m now on a 2.5mg what’s the point in taking it dose, my doctor knows I can’t tolerate mtx but without it I am not allowed the other treatment. Hopefully in a few years we can have access to all medications without being on mtx as well 🙂

    1. Thank you so much for sharing your MTX experience. Most health insurance companies in the US are also requiring MTX for access to any and all biologic drugs. For my Orencia the requirements were to have tried/failed Methotrexate, Enbrel AND Humira within the last 130 days. Thankfully we will be able to say that I “failed” or “contradicted” the MTX due to side effects so that can be documented in my records. Either way, these requirements are absurd. The good news is that in the US individual States are beginning to pass legislation that limit the use of step therapy by insurers. Like you, I am optimistic for a future in which patients are able to get the access to the drugs they need as fast as they need them!!

      Thank you for reading, and I hope you are feeling well today!

      1. That sounds like a fantastic way forward. In the uk we are so lucky that we don’t have to pay for meds but the policy’s and protocols are much more strict. I had to try each biologic for 6 months before I could try another. I wish they would just stop messing around and just admit that biologics are the way forward and issue every new person diagnosed with the best medication available, no matter what the financial situation. I hope you start to feel better soon and you can leave the mtx behind. 🙂 xx

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