Why I’m Stopping Treatment for my CVID

I write a lot about my invisible chronic illness to help inform folks who may be Google searching for answers or just commiseration. I’ve been struggling with Common Variable Immune Deficiency for about six years, though I’ve only been aware of it for about two.

I’ve had ups and downs with the only treatment available, which is the infusion of immunoglobulin from blood plasma donors. But the weekly infusions were emotionally draining and the monthly infusions have become physically unbearable.

Over the past year, I’ve experienced an increasing amount of fatigue. I have daily low-level fatigue which makes it difficult to wake up early and generally requires me getting into bed around 7 p.m. I develop bouts of intense exhaustion which last 2-3 days and have become more frequent – at least once a month at this point. If I add in the 3-4 days it takes to recover from my monthly blood plasma infusion – which puts me into an absolute stupor – I’m losing a significant amount of time to, well, live.

Over It.

On the plus side, since I’ve been on the infusions I’ve had significantly fewer infections and needed less antibiotics – a big deal as antibiotics almost killed me!

But I also can’t be sure that these infusions aren’t harming me more than helping me. Before I was on them, I walked around with chronic sinusitis but still had the energy for Crossfit competitions. Now I am at the point where I’ve had to quit my gym altogether – a demoralizing defeat after eight years of building both strength and community – and relegate myself to an elliptical machine.

There’s no reason to believe stopping treatment will increase my energy. My doctor and I are both pretty convinced I have Chronic Fatigue Syndrome, which has no treatment or cure. BUT, if I can suffer the CFS without adding in the emotional and physical burden of the debilitating infusions, it’s at least worth a try.

If I begin to get significant infections again, especially as the next winter sets in, we will have to explore starting infusions again. But for now, I want to experience the freedom from staring at the next infusion date on the calendar and wondering how many days I’ll have to keep open, freedom from fighting with insurance companies and specialty pharmacies every six months, freedom from worrying about immunoglobulin shortages, freedom from the pre-meds and prednisone and hydration drinks and needles and the stupid pump that keeps shutting off and saying there’s an air bubble when there definitely isn’t.

Managing CVID and CFS is going to be a journey with a lot of trial and error. So I’m trying this for now. Sometimes the treatment is worse than the disease.

Here is another CVID’s patient take on her struggle with immunoglobulin treatments.

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