What it’s like to treat an autoimmune disease as a teenager. | by Austin le

I have an autoimmune condition — VKH. It’s a type of inflammation that attacks your immune system. My version of VKH is only the ocular version aka it attacks my eyes.

If you’re on medication like Humira or Methotrexate, you might already know of major side effects. For me, it was a spike in my liver enzymes. Not a little blimp — a big spike. Basically, my liver was a walking red flag. Here’s the story of what happened and how it happened.

But first, we need to know. — what are good Liver enzyme count?

ALT (Alanine transaminase):

Normal range is usually about 7 to 56 units per liter (U/L) of blood.
AST (Aspartate transaminase):
The normal range is usually about 10 to 40 U/L.

When these numbers are higher than usual, you should be concerned. Your doctor should be concerned.

Why?

It’s because the liver is an important organ that detoxes your body. No need for $200 juice cleansers. They’re scamming you. Your body does the real detoxing free of charge.

My liver is working normally minus the fact my enzyme count sits at 168. If you don’t yet understand that is nearly 3 times the amount it should be.

My liver could die. Probably. Maybe. I don’t know. It’s not ideal.

The weird part isn’t failing liver. It’s that it happened when I was currently on Humira. The biotic drug, the sister component to her brother Methotrexate.

Methotrexate is an immunosuppressant with the most notable side effect — it attacks your liver. If I remember correctly, I was on methotrexate for a few weeks to a couple months. My liver count enzymes shot up to around 130–140.

Expected.

I got off methotrexate and my liver count returned to around 51 ALT. Roughly back to normal.

After I got off methotrexate, my rheumatologist transitioned me to Humira. A safer option than Methotrexate. It does the same thing, slowly suppressing my immune system. 1 shot every 2 weeks. I was doing pretty good. No issues. No side effects.

Did a blood test a week before my next visit, and everything went back to normal.

My ALT shot up to 160 U/L

What? That makes no sense. Humira is not capable of doing that on these levels, even the rheumatologist was concerned.

The weirder part is that my vitals were great.

My blood pressure — 119. Almost perfect.

My pulse was stable.

My temperature was normal.

I had no clear signs of liver failure. That’s not how liver damage typically presents. This likely suggests that my liver is working somewhat normally despite the enzyme increase. Somehow.

My rheumatologist was like “We need to see this goddamn liver”

He did not actually say that but I do need to get an ultrasound of my liver and multiple blood tests just on my liver.

My injured liver.

Humira. What are you doing? You’re killing my liver even though it’s suppressing my inflammation at the same time.

Imagine that Humira is like a gangster who protects you from criminals but also kills your relatives.

That’s basically what’s happening.

The funny part is that Humira can elevate liver enzymes but the problem is that it doesn’t spike it up to 160 U/L. That is higher than what Methotrexate did and it is known for liver toxicity.

How can the safer option somehow do more damage than the drug that is known to attack your liver? That’s not how it works.

I am literally a walking anomaly.

I was given a 3-page packet order for liver blood tests. Three pages long? 6 tests in total. You know how big that order is. It’s massive. You’ll lose quite a bit of blood. Maybe a tablespoon or two.

Nothing too bad.

It’s a tedious process trying to deal with an autoimmune condition like VKH because a lot of medications just have so many side effects that harm you as well as trying to help you.

Constant balancing acts with doctor appointments, blood tests, and managing symptoms.

What I don’t appreciate is parents being like, “You don’t exercise or eat your vegetables.”

NO.

That’s not how it works. Not in 3 months. I hope not in 3 months.

No exercise doesn’t dictate short-term major spikes.

So yeah, my liver problems are still ongoing at this point in time. I have not yet seen an ultrasound of my liver or my order of blood tests. I’m not a quitter because my ego wouldn’t allow it. I’m making it through it test by test.

If you’re dealing with something similar, hang in there. And if you learned something new, good job. Don’t hesitate to ask questions and seek out support.

Knowledge is power even when your body is fighting back.

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