I was thrilled to read about Palforzia, the new peanut allergy treatment and therapy for people with my terrible incurable disease. I was actually in one of the initial trials, but was kicked out because my anaphylactic reaction was so severe that I needed to take oral steroids to stop my asthma in the days following my monster reaction. The news: Palforzia approved by the FDA. Finally. Something to ease the horror and anxiety of living with a crazy peanut-allergic immune system.
Digging a little deeper, all is not well with this new therapy. When I was participating in the trial, I had some of this experimental 'medication,' which is essentially just peanut protein. My personal experience was that it made my immune system go fucking berserk. I woke up itchy with deep red splotches the following day, and my asthma flared up so I had to take glucocorticoid steroid pills to breath and keep the skin inflammation down. I was unable to work for a couple of days. I was really fucked up. I felt really fucked up. Giving my immune system something that will induce self-destruct mode was not an easy therapy. I was subsequently kicked out of the study for taking the steroids.
I'm very glad that I tried to be in this study. I chose to tackle my fear and anxiety by doing the thing the one thing I fear the most. I literally chose to taste death. My last words to my doctor before the delayed onset anaphylactic reaction started was: "My only regret is that I have but one life to lose to fight peanut allergy." It is a powerful thing to want something so much that you are willing to die to get it. I want a cure for peanut allergies and I am prepared to die in the battle to make this happen.
A year later, I heard about another brave lady who participated in the study, but had to discontinue. The reason, she developed eosinophilic esophagitis from the therapy. That means her immune system is attacking her esophagus. She will have a sore throat for the rest of her life. That fucking sucks, and I pray for the good health of this courageous warrior every day. I'm not sure a peanut allergy therapy with a side effect of developing another dangerous auto-immune disease is worth it. It doesn't seem entirely safe.
According to a new meta-analysis that was published in 'The Lancet', Palforzia could actually do more harm than good. According to Chu et al., "peanut oral immunotherapy regimens considerably increase allergic and anaphylactic reactions over avoidance or placebo, despite effectively inducing desensitisation. Safer peanut allergy treatment approaches and rigorous randomised controlled trials that evaluate patient-important outcomes are needed" (Chu et al, 2019). People who undergo this therapy have increased rates of anaphylactic reactions!
Which makes sense, because I've tried the drug. My immune system to freaked out and made me itchy and completely miserable. I gobbled steroid pills like they were Tic-Tacs to extinguish the fire this drug started in my body.
I think the idea of this drug is good. I would have greatly reduced anxiety if I could be desensitized to peanut protein and I would be able to eat up to two whole peanuts. Imagine how my life would change, I would be able to eat Thai, Vietnamese, and Chinese food restaurants! Such deliciousness! I would save money on groceries by being able to buy food from the bulk food section in the grocery store. I could start living a more eco-friendly lifestyle because I would no longer need to buy things encased in plastic. I could start a 'zero-waste' Instagram, and delight the world with my planet-friendly lifestyle. I could be a green influencer. I would no longer have to wash off packages of food before I open them. Eating might be actually enjoyable instead of stressful. That all sounds great to me, but at what cost?
The truth is, while I am willing to die to destroy peanut allergy forever, I am not willing to take the risk of getting another auto-immune disease. My body's alright fucked up. I don't need yet another dread chronic illness to deal with. My plate is full and my cup runneth over already in those departments. The good scientific research available says that if I do choose to undergo this therapy my immune system will go bananas and I will be hospitalized more frequently for anaphylaxis. Which was my personal experience with this drug.
Sometimes I fantasize about awesome it would be to have a normal body, and be able to do normal things. The concept of Palforzia onced seemed like a trail to hike to get to a more normal body. It's not, according to science. I've decided against Palforzia, it is just too dangerous. I really hate the hospital and I'm not keen to visit the emergency room more frequently than absolutely necessary. I don't want to mess up my body more.
I'll stay vigilant, and I will wait for a safer treatment for my deadly peanut allergy.
