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Crohn's, Covid and Paxlovid

After going nearly two and a half years without one single positive covid test, we were ready to have custom made t-shirts stating, "NEVER HAD COVID," or something to that tune. As a family of 5 we were proud of avoiding the deadly virus, and not contributing to the lethal spread taking over the world. Well, we ate our words. Extreme diligence, masking, compulsive hand washing and avoiding situations that would prove too risky wasn't enough. Our kindergartner ended up bringing covid home on the last day of school. Talk about dumb luck.

We demonstrated that testing positive for covid is all about when you test, what type of test you take, and number of times you test. It was a Thursday morning, and I gave our 6 year old an at home test. It couldn't be more negative. My gut instinct told me not to trust the stark white window because her symptoms displayed otherwise. She was running a fever of 104, and overall felt miserable. Plus, we had just been around a lot of other families and their kids without knowing their vaccination status. Bad move. Rather than sit in urgent care surrounded by a waiting room of other sick people, I drove her straight to the ER. I don't mean to minimize the care offered at UC clinics (great for certain circumstances), but in our situation having two littles not eligible for their covid vaccines, and me being immunocompromised, time was of the essence in order to get desired results.

Sure enough, two hours later, and the answer I dreaded for over two years became my reality. Her test was positive. How did this happen? We had been so careful? We let our guard down, and put our trust in others to stay home when sick and get the appropriate testing done. After our daughter's first test came up negative though, it got me thinking. If a huge majority of people are relying on at home tests, and only test a few times, the probability of spreading covid like wild fire is incredibly likely.

We were extremely hopeful that the virus would be contained to just one of our 5 family members......but that hope faded quickly as one by one, we all started to fall ill. Our eldest bounced back the quickest, but the two youngest and unvaccinated got very sick. 105 fevers, labored breathing and more trips to the emergency room. My husband was also hit very hard. We were thankful to be vaccinated though because we couldn't imagine the alternative, and how things could've been far worse, and played out very different. Then, there was me. I have Crohn's disease (autoimmune) and take Humira which is an immunosuppressant. Getting covid was my worst nightmare. Needless to say, we were scared.

On day 3 of being very sick, I was prescribed Paxlovid. "The FDA has authorized the emergency use of PAXLOVID, an investigational medicine, for the treatment of mild-to-moderate COVID-19 in adults and children (12 years of age and older weighing at least 88 pounds [40 kg]) with a positive test for the virus that causes COVID-19, and who are at high risk for progression to severe COVID-19, including hospitalization or death, under an EUA. PAXLOVID is investigational because it is still being studied. There is limited information about the safety and effectiveness of using PAXLOVID to treat people with mild-to-moderate ​​​​​​​COVID‑19." (Pfizer website). Read more about Paxlovid HERE.

I was very hesitant to start this medication. I did my research, and was mostly nervous about the "covid rebound" phenom that I kept seeing. Read a great article from The Hill, on the rebound effect HERE. It doesn't happen to everyone, but in some cases, after taking these pills, covid symptoms can return. Like all other medications, diarrhea was listed as a side effect, and although I didn't like that, it's pretty common on several scripts. Based on the way I felt, I decided to get on board with Paxlovid. Winding up in the hospital wasn't appealing, so let's go for it, right? Not even 24 hours later, and I was doubled over in pain with severe abdominal cramping and terrible DIARRHEA. So.....not only did I have covid, but now these horrible GI affects from Paxlovid as well. I got on the horn with my gastroenterologist and the pharmacist because it's always critical to consult with your care team before abruptly stopping any medication. We collectively decided to stop the 5 day treatment. I ultimately came to the conclusion that I rather fight covid than risk having yet another Crohn's flare. I recently declared remission after the worst flare of my life, so to go right back to the hell I was in, wasn't an option for me. I have a lot of fight in me, but even warriors need a reprieve from battle.

If you have Crohn's, or any other disease that falls under the IBD umbrella, I implore you to do your research and have candid conversations with your medical team before starting any treatment. Everyone is different, but I'm here to tell you that there can be serious implications from taking Paxlovid if you already have GI issues. Yes, it works for many people, but in my case it put me in a worse situation than prior to starting it. Know your options, discuss them, and make an informed decision based on your personal criteria. As a patient advocate, I encourage you to take the wheel. NEVER ride in the back seat.

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