Experiences with Leflunomide

By definition, leflunomide is a DMARD (disease-modifying anti-rheumatic drug) usually prescribed in daily maintenance doses of 10 or 20 mg. Leflunomide is the generic name of the name brand drug Arava. It is an immunosuppressant drug designed to decrease inflammation and in turn, the joint damage and disability from psoriatic arthritis. You will also need regular blood tests from your doctor to monitor your liver functioning.

My experience taking leflunomide

I was prescribed leflunomide after failing on methotrexate and I took it along with a biologic. I started at 10 mg and then after I experienced no major side effects my doctor increased my dosage to 20 mg. When I first started it, I did experience some stomach upset and frequent headaches, most often in the evening.

Things to know about taking Leflunomide

Timing is important

When I first started leflunomide, I took it in the morning, with breakfast. It took about two weeks for me to realize that it was putting me to sleep by midafternoon. I’m talking, literally can’t hold my eyes open, asleep. I couldn’t construct sentences. So, I figured it might be a good idea to take it with dinner. But I found that it kept me up past my bedtime, and the sleepiness didn’t affect me until 1 AM.

Finally, I landed on a time that would work perfectly, mid-afternoon. I set my alarm for 3 o’clock every day and now the overwhelming sleepiness comes at just the right time. Sure, it took me over a month to finally put all the pieces of timing together, but managing the timing has made such a big difference when it comes to managing one of the major side effects.

“Take with a meal” is more than just a suggestion

When I finally figured out that 3 PM was the right time, I thought I could get away with just popping my medicine and moving on. Boy, was I wrong. I ended up with pretty severe pain in my stomach, plus cramping and diarrhea. Because I am a little hard-headed, and partially because I take so many medicines, it took some time to put two and two together. For me, I HAVE to take leflunomide with a meal. It is certainly more than just a suggestion on the bottle. And a simple glass of milk won’t do it. You need to actually eat something.

Patience is a necessity

Leflunomide, in my experience, is certainly not like many medications that “normal” people take. Before becoming chronically ill, I really thought that if I was sick, I could go to the doctor, get medicine, and within a few days, get to feeling better. Being that I started leflunomide fairly shortly after my initial diagnosis, I still lived in that nice dream world. Thinking that within a few days, I’d start to notice a difference, that I might actually feel “better.”

Spoiler alert: I didn’t.

Weeks went by as I managed the side effects, and those turned into months. While I never did actually wake up feeling “better” overnight, little by little I noticed decreased pain in my hands and feet. And actually, it wasn’t until I went out of town and missed 2 doses of medicine that I realized how much it really helps me.

Adjusting to a new medication

In case you haven’t realized it yet, short of steroids, you will rarely find a medication to treat psoriatic arthritis that works “quickly.” Oftentimes, in order to really make a decision if a medication is working for you, it takes anywhere from a few months to even half a year. When you take leflunomide, like many medications for psoriatic arthritis, you will spend quite a bit of time making adjustments to your life for the side effects of the medication. Rather than a sprint, deciding if it actually works is certainly more of a marathon.

Talk with your doctor

Always speak with your doctor about concerns or questions you may have before, during, or after starting any medication. Information provided in this article is simply my personal experiences and observations about taking leflunomide. Please don’t assume it is medical advice or recommendations. Always, always, always speak with your doctor!