The Truth About Taking Medications When You Have an Autoimmune Disease

Everyone has gotten sick in their lifetime. I’m not just talking about the sniffles or a touch of the flu here. I’m talking the knock-down, drag-out illnesses that spawned the phrase, “You look like death warmed over.” To which the reply is usually, “I feel even worse.” This is the type of illness I’m talking about and I want you to think of.

Now, what do you do when you’re that sick? Well, most people usually take a pill. And whether it’s aspirin or an antibiotic, eventually, we get better. Because these are the normal illnesses that come and go and happen to all of us. And the medicines are tried-and-true and effective. But not all illnesses are “normal” and not all medications are tried-and-true and a lot are ineffective.

So how does it work for those of us who have a chronic disease and don’t have the ability to take a pill that is well known to help us? It’s a crap shoot for one thing. It is basically a list of side effects with no real promise of anything because there’s no guarantee our bodies will react to this medication in the same way as anyone else’s. That’s what can happen with autoimmune diseases. The immune system does whatever it wants and we’re along for the ride. Throw a pill in the mix and it’s really just one big chemistry experiment.

But the issue most people don’t understand is the fact that medications that are intended to help those of us with autoimmune diseases don’t work in the same way most other medications do. They are intended to work at a specific and constant level in the blood and they take time to build up to that level, sometimes even months. It’s not like having a headache. You can’t take a couple of aspirin and it’ll be gone in 20 minutes or so. When you get Sjogren’s syndrome or lupus, or any of the 300+ diagnosable autoimmune conditions, your meds could take six months to a year to kick in and they must then be taken daily to maintain a therapeutic level. Forever. (Go ahead, “Sandlot” fans…)

That is, unless they stop working. Yup. They can stop working. Just like that. Another effect of having an autoimmune disease. You see, when you take a medication for the flu or a sinus infection, the medicine is fighting whatever is causing that illness. A virus or bacteria. And when that bug is gone, the illness is gone, and you can stop taking the pills.

But with an autoimmune disease, there is no “bug.” The medication is “fighting” your immune system to keep it from attacking you. The medicine essentially keeps parts of your immune system from getting too strong. But this is your body. And your body can learn and fight back. Your body can actually find ways to work around the medications that are supposed to be helping it, which means they won’t work anymore. So those of us with autoimmune diseases may have to stop taking them. And when we do, any good they are doing in terms of pain relief or other symptom relief could go away. We may go back to being fully symptomatic with nowhere to turn. Until the next medication can be tried…

Imagine living a life where the illness you have causes pain and attacks your body. There is no cure, but there are medications you can take. But you have to wait a long time for those medications to kick in if they are going to work. Then, if they do work, there is a chance they will stop working. Sooner or later. And the cycle will start all over again.

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Thinkstock photo by Cristi Nistor