TRAPS Life Without Proper Medication – My Story

Written by Claire

I’m not too sure where to begin regarding my thoughts on no treatment or non-medical treatment for TRAPS (TNF-receptor associated periodic fever syndrome) and other autoinflammatory diseases. All I know is I have so much to tell you of the consequences of a lifetime without treatment. 

Hi, I’m a woman in my mid-50s with TRAPS. I was diagnosed approximately eight years ago .

As a child, I was sickly and spent a lot of time in Sick Kids Hospital in Toronto. Back in the sixties, no one knew what I had or what was going on except I always had blood in my urine and had issues with my digestive system. Then it seemed to have disappeared except for the rare flare at Christmas, Easter, or birthdays.  My mom always thought I was a delicate flower so too much excitement, too much of anything was very controlled.

I grew into my twenties and like most of us in my time, I got married and started a family. It was the healthiest time of my life! I had the energy of three people. I was on top of the world. Nothing could stop me or bring me down. Great family, awesome children, best career ever…I was unstoppable! 

Then I turned 35. 

I woke up one morning unable to move. My youngest son stayed home from school that day–his first time ever missing school. I was so weak I could not even sip or hold a juice box. My husband was out of town working so all I had was my young son. He ran to a neighbor’s house. They came over and could not believe how swollen and distorted I looked. Immediately, they called 911. The ambulance  arrived and they took one look at me and said,  “I hope she makes it to the hospital.” I was in total organ failure!  This was the beginning of my nightmare. I was in the hospital for weeks. That year I had three major flares. I had a hysterectomy and was  diagnosed with everything from lupus to a rare form of lymphoma. Needless to say, my life changed tremendously. 

The next decade and a half brought countless doctors appointments, most telling me, “we know something is not right” and others saying, “it’s all in your head.”  It cost me my marriage, my security, and life as I knew it. 

One day I was in the emergency room with a swollen rash everywhere and my c-reactive protein (an inflammatory marker in my blood) at 465. I honestly thought, “Today I’m gonna die not knowing why…perhaps during my autopsy they will figure it out.” Sadly, that gave me comfort. A young doctor, his first week on the job, walked by me, stopped, pointed, and said, “I know what you have. I’ll be right back.” I thought, “Buddy, you’re just another *bleep* who will get my hopes up and then call my crazy.” He came back with a rheumatologist  (who is still my doctor), and for the first time explained to me what they believed was going on and what we needed to do to prove it. So we did genetics, countless hours of documentation, and countless hours of submitting applications for biological medicine only to be denied.

TRAPS periodic fever syndrome
With genetic testing, small mistakes in DNA that can cause systemic autoinflammatory diseases can be found, which can lead to a diagnosis and better treatment for patients with periodic fever syndromes. Learn more about genetic testing here.

Eight years have passed since my confirmed diagnosis of TRAPS and my only effective medicine has been prednisone. I have tried Humira, Enbrel, and a few more that never helped me.  I was too far gone for those medicines. I have not been able to get access to the treatments that are more effective for TRAPS. The inflammation  with no proper treatment over decades put me in a very terrible position. I could no longer work and enjoy my lifestyle.

Amyloidosis, high blood pressure, kidney issues, eye issues, and liver issues were the first to crop up. During this time, I was still flaring and being treated with prednisone. Almost four years ago I had a flare, a  real bad one, and was on Enbrel at that time. I ended up blowing my L3, L5, and S1 in my spine. It was classified as catastrophic. I am still in therapy after learning to walk again and my bladder stopped working. I now have a pacemaker in my right bum cheek attached to my spine so I can urinate and use my bowels, plus I have a multitude of issues that come with a spinal cord injury. For a long time Enbrel was blamed, but with evidence from many  x-rays, we now realize that constant, prolonged, untreated inflammation was to blame.

Needless to say, I wish I could turn back time.

I’m telling you my story so you are aware that this is what happens when you are not properly treated or are not any treatment plan for autoinflammatory syndromes. It angers me to see parents go through years of doctors and tests and stress with their children, only to resort to tart cherry or diet*, or nothing at all.  If you have the option of a biological treatment that could stop unseen inflammation from destroying your children’s body in the future, why would you not try it? Treatment plans are not always convenient, easy, fashionable, or 9 to 5. They are designed to treat your child now, so that in the future they can live a happy, productive, and healthy life.

I share my experience to show what happens when treatment is never given or comes too late. 

*Research has shown the most effective treatments for TRAPS are biologic medications that target the cytokine Il-1. Tart cherry supplements and diet are not proven treatments for any periodic fever syndrome. Read more here to learn about TRAPS.

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