In my last post about my challenge in getting my rheumatoid arthritis under control, I announced that I was stopping methotrexate and continuing on with the Plaquenil…
Well, that lasted around four weeks.
Four weeks off the methotrexate and BAM! Labs went zooming back up, way past my previous levels of inflammation… The pain got much worse, my eyes got all blurry and irritated again. So I went in for my RA visit and the doc asked how I was doing. I reminded him that I had stopped the methotrexate and he said “You mean that you stopped the Plaquenil, right?” and I corrected him… As it turns out, my labs turned up something interesting. Ok, interesting really isn’t the right word. As it turns out, my labs were the first step in what would become a monumental event. Perhaps you have seen commercials for it on NBC. It’s called “The Event”.
Yes. I am joking about the NBC thing.
My monumental event, or rather series of monumental events, are bigger than that show (though I must confess, I am enjoying NBC’s “The Event”) and the impact of the discovery that was made through that one little blood test has changed my life, and my family’s life, forever.
The little blood test was for a G6PD level and my rheumatologist tacked it onto my usual blood work as he had recently started me on Plaquenil. When I had the test, and when he informed me that I had to stop the Plaquenil immediately because I have G6PD deficiency, I will admit that I knew next to nothing about G6PD deficiency. All I knew was to stop the Plaquenil. He wanted to start me on Cimzia immediately so that I would hopefully see some relief from my RA symptoms (which were totally kicking my butt as far as fatigue and pain go). I mentioned that I have a swollen lymph node and he called off the Cimzia and told me to see my primary or a surgeon to have it biopsied in case it is a lymphoma.
A lymphoma? No panic. RA puts me at a higher risk for developing lymphoma. So I called my primary doc when I got home and they saw me within the hour… I gave them copies of my labs, pointed out the G6PD stuff, and left with a course of antibiotics to see if the swollen bit was an infection or if we had to go cutting me up.
A few days in and I felt like crap…Shortness of breath, more fatigue… I read up and that is when I started to learn the truth about G6PD deficiency and how much of my life it had already impacted and how to prevent further near-death, permanent damage causing experiences.
I learned, in that first week, that I would have to educate my primary care doctor, as in that very first day he prescribed an antibiotic that is contraindicated in people with G6PD deficiency. They did prescribe a new antibiotic, and the swelling did decrease and nobody seems concerned about it anymore. I should be starting Cimzia as soon as the insurance approves it for self-injection (they did approve it for injection by a nurse, but they would only allow it if I went to a cancer center 45 minutes from here… HA!)
Little did I know, in that first week, that this one little enzyme wasn’t just a key player in the functioning of the human body, and why mine had malfunctioned so many times along the way, but my sudden, new awareness of it would save a life, potentially save other lives, and bring a confusing and abrupt end to an important relationship, that has brought me clarity, as painful and perplexing as it is to accept that.
So we have been having more drama than any TV program… And in the next few entries I will share the mystery, the miracle, the pain, and the triumph.
For now though, I must sleep.