Stupid little pills. (Treatment post #4)

We went to the doctor today for a follow-up. (Yes, doctors need doctors too.)

His name is Dr. Jaffy, and this was only our second visit to him. I was supposed to see him five months ago, but I stubbornly put it off until things got worse. (Doctors also make the worst patients.)

"Worse" is what my hands look like today. As soon as I sat down in the clinic chair, Doc Jaffy took my knobby, red hands and gently tapped on the joints as he counted. "Looks like all your PIPs are inflamed." 

Proximal Inter-Phalangeal joint. PIP. Such a cute word but whenever my doctors bring it up, the context is never cute. "Where else?" he asked. I said, my knuckles, elbows, knees, and toes, and then felt kinda stupid for reciting them to him in this order like a kid. He put his finger to his masked chin and thought for a while.

"Mag-biologics na nga tayo," he said. Biologics are a class of drugs meant to suppress my immune system and keep it from attacking my own joints and skin. The one he recommended, the only one readily available in the Philippines, comes as a once-a-month injection into fat tissue, "like Ozempic." 

"How much is it?" I asked.

"18,000 pesos per shot. You'll need one shot per month." 

I glanced at Rap, my husband, who was sitting on the edge of the patient bed, his knees dangling down the sides despite his height. He replied with a supportive look of, If you need it, you need it.

"What are the alternatives?"

"Well, we can increase your dose of oral methotrexate." 

More methotrexate? I wanted to cry.

I've been living with psoriatic arthritis for about 15 years now, though the diagnosis hasn't always been clear. It used to be idiopathic juvenile arthritis, then juvenile rheumatoid arthritis, then rheumatoid arthritis, and now psoriatic arthritis. I actually document the start of my illness journey here. 

Just like any chronic illness, there are good days and there are bad days. On good days, I have energy, I can exercise, work, cook, clean, do chores and stuff. On bad days, I lay in bed for most of the day and doomscroll, and what I'm seeing on my phone hardly registers in my brain because of brain fog. 

Though I can categorically say that the worst days are behind me (my fingers used to be so rigid that I could not put on clothes, open doors, handle utensils). Getting the correct diagnosis and treatment has meant the world in moving forward. 

The mainstay of treatment involves taking the aforementioned methotrexate, an anti-cancer drug that also benefits patients with autoimmune arthritis. Like biologics, methotrexate effectively suppresses your own immune system so that it doesn't attack your own joints. 

Even though it's a cure, methotrexate is the absolute bane of my existence. I take five tablets every Friday, then I feel like a truck hit me the entire weekend. And now Doc Jaffy is telling me I need to take more of it to achieve remission. More stupid little pills. More weekends spent being run over by trucks. 

I must have been silent for some time because Doc Jaffy offered an alternative.

"If you don't want oral," he said, probably sensing my distress, "we can do methotrexate injections."

The stupid little pill, now in liquid form. Hmm. "I'll think about it, doc." 

After some more back-and-forth on the treatment plan, we decided to continue with oral therapy for now. He gave me the number of an agent I can contact when I do want to try the injectables. 

On the way out, Rap asked me, "Why are you hesitating with the injections?" They did seem to be the obvious next step.

I sighed. There was no logical answer to this, but I tried my best to explain.

I've been living with this disease for fifteen years now. I know I'll be living with it forever. Remission seems like some made-up, unreachable fantasy to keep me going, like the concept of world peace. But even though my condition makes life difficult, I've kind of learned to live with it as background noise in my day-to-day life. Often, I even forget that I have it. 

But hearing that it might actually be time to step up treatment is not just a stark reminder that I am indeed sick, but that I have actively failed, time and time again, at containing my sickness. 

To me, it's even proof that not only am I NOT getting better, I'm actually getting much worse. 

Maybe that’s the hardest part- not the pain, not the pills, not even the price - but the quiet, stubborn grief of having to admit that what you’re doing might not be enough anymore.

And maybe I would rather avoid acknowledging that miserable fact. Maybe I would even like to keep taking my stupid little tablets every Friday, if it meant preserving this little fantasy that everything is the way it has always been, and nothing is changing. 

So, we got home, had lunch, cleaned up. I took out a blister pack of Methotrexate, popped some tablets out, and gulped them down. As usual, I chased this down with my favorite bar of chocolate. I often give myself sugary treats after taking my meds because I will literally GAG if I rawdog them. But maybe subconsciously, I've also forced myself to learn a simple lesson in a stupid way: that often in life, you have to get through the bitter to get to the sweet.

. . . 

This post was inspired by my fellow arthritis warrior and public health advocate, Jofti Villena. If you liked this post, check out her upcoming series documenting her own disease journey in the context of Universal Health Care with NCD Alliance. Salamat, Jofti!