The Fibromyalgia/Lupus Patient, Remicade Infusions, and the ER!

The Fibromyalgia/Lupus Patient, Remicade Infusions, and the ER!

If you follow me on Twitter, you will probably be aware that my wife suffers from Fibromyalgia and Lupus, which frequently sends her to the emergency room, when the pain gets too unbearable. Our medical insurance company, Blue Cross, Blue Shield of Kansas, are pushing for us to go to an urgent care clinic; which we have done before, they take $75 of our money, only to tell us to go to the ER as they cannot help, so we cut out the middle man. Our local ER department, Wesley Woodlawn has been amazing, getting my wife’s pain under control and sent home quickly, thank you everyone at Wesley Woodlawn.

My wife, Erin was diagnosed with Fibromyalgia and Lupus a few years back, and she started Remicade infusions about 7 – 8 months ago in an effort to tame the frequent Lupus flares as my wife was visiting the ER every 6 – 8 weeks with extremely painful Lupus flares. After her first infusion, I noted that her visits to the ER had increased in frequency, to every 2 – 3 weeks. I pointed this out to Erin, and she dismissed my concerns; saying that it’s going to take time to work, at least 4 – 6 months. But with every Remicade infusion, she was visiting the emergency room more and more frequently, to the point where we are at the ER every 7 – 10 days. I’m no doctor, but I understand cause and effect, but what do I know?

Last night, we were at the Wesley Woodlawn ER again for Erin’s sixth big flare of 2021; and it’s only February 16. Her third visit since her last Remicade infusion, three weeks back, which had an immediate effect on her body, causing her joints to be inflamed instantly, which, in turn, triggered a Lupus flare, ending in a visit to the ER after her regular doctors could not help her with the pain.

Three ER visits ago, January 25, 2021, I was finally vindicated, when an ER doctor confirmed what I had been saying about Erin having a bad reaction to the Remicade treatments. The doctor told her to look into the half-life of Remicade in the body; saying that until the Remicade is out of her system, she is going to be visiting the ER frequently with flares. I take no pleasure in being right, but the vindication is nice.

Every day it breaks my heart to see my wife in pain, constantly, and I do mean constantly, just the intensity of pain varies. I feel so helpless, not being able to do anything to ease her pain, other than to drive her to the emergency room on a weekly basis. Erin’s RA doctor is going to try another infusion, I don’t know which one, I just hope that it works. I would like to be able to be a husband, instead of a caregiver. I spent my teenage years being a caregiver for my mother, it’s frustrating to have to do it again for my wife, especially as we are still relatively young, in our mid-40s. Erin is the love of my life, what else can I do?

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