My Experience Using Methotrexate for 14 Years

The overturning of Roe v. Wade has highlighted the importance of methotrexate for the RA community. Here’s my experience using this medication.

When rheumatoid arthritis (RA) patients first hear about methotrexate, they can be very concerned — especially when they learn that it’s also used as a drug for chemotherapy or to induce an abortion.

It’s because of this latter fact that it has recently gained greater public attention since the overturning of Roe v. Wade. This decision meant that abortion was no longer a constitutional right, and access to drugs like methotrexate came under scrutiny.

You can read about methotrexate access since the overturning of Roe v. Wade here.

Methotrexate is a very important drug for many chronic illness communities. I used it from ages 15 to 29, with a very brief break at the age of 17. So, how did it go for me?

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Starting methotrexate as a child

When I was first diagnosed with juvenile RA, I was 10 years old. This was over 25 years ago now, and there weren’t as many medication options, especially for children.

The first medication I took was just regular naproxen. I took this for several years to manage the swelling and pain in my fingers where my symptoms first started.

When I was 15 years old, the RA moved into my knees and the naproxen didn’t work as well anymore.

My doctors said it was time to find a long-term treatment to get my swelling under control.

They drained my knee, gave me a steroid injection, and sent me home with methotrexate pills to start once a week.

I was very unaware of the side effects or even what type of medication methotrexate was, but they discussed it with my parents who decided it was the best option for me.

The doctors explained that it might make me feel a little sick or run down, so taking it on the weekends when I didn’t have school could be helpful.

The impacts of taking methotrexate as a child

I vividly remember taking those pills for the first time on a Saturday evening. I stared at them for a while wondering what they might do but hoping that they would cure my symptoms.

I woke up the next day feeling pretty tired, almost like I was recovering from an illness. I tried taking it in the evenings to avoid any nausea and also so I wouldn’t miss out on activities.

After only one month, I saw the benefits in my joints. I was able to move with more ease and it seemed like the swelling was getting better too.

I continued taking methotrexate all through high school. Many weekends I would forget to take it or I simply didn’t want to because I was with friends or doing some activity.

At the time, I had an ambivalent relationship with methotrexate. I was very thankful for it — yet also resentful. It was both a savior and a very constant reminder of my RA.

I could always tell when I skipped the medication because I would have a rough couple of weeks after.

The only side effects I had with methotrexate at this young age were feeling tired and nauseated.

Taking methotrexate again as an adult

I had a brief remission of RA at age 17 and stopped all treatment. When my symptoms came back at age 18, the first medication the doctor started me on was methotrexate. I knew it worked in the past, so I was willing to take it again.

They tried several other medications for me over the next few years, but I always kept the methotrexate as part of my routine.

At age 20, I started my first biologic. I went through a few different ones, including Humira and Enbrel, before settling on Simponi as the one that worked well for managing my symptoms.

My doctor also explained that methotrexate can cause birth defects, so I started taking birth control.

From that time on, I was on methotrexate pills weekly, coupled with a biologic and my birth control. This did well in managing my symptoms.

Around age 25, my husband changed jobs and our new insurance no longer covered the biologics. It was a very long road navigating a new medication, so I continued to stay on methotrexate. But it wasn’t working as well without the biologic, so my doctor switched me to weekly methotrexate injections until we could sort out the insurance issues.

I did so well with the injections that I continued using them for several years.

The impacts of methotrexate as an adult

I had the same side effects using methotrexate as an adult as I did as a child. I would feel very tired the day I took it and sometimes I would have an upset stomach.

When I switched to the injections, I did not have any stomach issues at all. But I would still feel tired and worn out later in the day after getting it, and sometimes the next day too.

But these side effects felt extremely minor in comparison to my RA symptoms being kept at bay.

There were other things to consider when taking methotrexate as an adult. I stopped taking it at age 29 when my husband and I decided to start our family.

And this is one of the biggest concerns I often hear from those considering methotrexate — whether it might hinder them from having children in the future.

My doctors have always assured me that stopping methotrexate in the right amount of time before having kids is perfectly safe. While it is not advised to take during pregnancy, there is no evidence to suggest that methotrexate would have any impact on future fertility.

I went to my doctor first before making any decisions, and she told me to stop methotrexate 3 months before stopping birth control. You can read about our journey of planning our family here.

Will I ever go back on methotrexate?

I am currently pregnant with my second child, so I have not gone back on methotrexate since we decided to start having kids.

After having children, I won’t have any problems going back on methotrexate if I need to. It worked well for me over the years for managing my symptoms. At times, it was also the only thing my insurance would approve.

Following the doctor’s instructions and taking it correctly insured I had a good and safe experience using it.

Using methotrexate has allowed me to maintain a quality of life that otherwise wouldn’t have been imaginable. For me, this was so important during my childhood. It allowed me to be a kid without pain, and I will forever be grateful.