Journey to ENT!

As I mentioned on my last blog post, December 28, 2021, was when my PCP put in an ENT Referral. Let me tell you, the process was a painful one. When I first called the ENT office, it had selections, press a number for new patients (do not recall which number it was), and I did press it, which prompted me to leave a message with my information and a representative will contact me within 48 hrs. I left my information but out of desperation due to the pain and swelling of the left ear, also led me to contact other ENT offices for any immediate openings. While in the process of calling several ENT offices, I learned that NOT all ENT specialists specialized in ear piercing cartilage infections. Which was a bummer. I put an end to my desperation since I was getting nowhere. I waited to hear back from the ENT office I was originally referred too but nada. So, the next day, I called again, but being in so much pain I decided to select the option for established patients and was able to speak with someone. I explained my situation, my pain and the swelling of my ear and told the receptionist I needed an appointment ASAP. Which thankfully, she understood and helped me out. By, January 7th, 2022, I was able to finally see ENT. 

The ENT specialist took a look at my left ear. Told me that the prior two antibiotics prescribed by my PCP were intended for skin infections and it would not have treated cartilage infections. Which in my mind made sense as to why my left ear was getting worse. I walked out with two more antibiotics to take, which included Ciprofloxacin, 500 mg, 2x daily for two weeks. But because that round of antibiotics also failed, I was then treated with Levofloxacin 500 mg, one tablet for 7 days. I always do research on the type of medications I take, and I got really nervous taking Levofloxacin - 500 mg, since it came with a black box warning. Regardless, I had to eliminate my options and see which medications would work and not work. 

When I followed up with ENT on 1/21/2022, I had finished Levofloxacin, my left ear did not get any better, in fact, my symptoms were starting to get worse two days prior. This is when ENT decided to put me on Prednisone. The regimen was as follow:

- 4 tablets a day for 3 days

-3 tablets a day for 3 days

-2 tablets a day for 3 days

-1 tablet a day for 3 days

I do recall her mentioning that if Prednisone does tend to work, that I may have an autoimmune disorder. I kind of laughed to myself and walked out of the office thinking that I was going to get better soon, that there is no way that I have an auto-immune disorder. My husband, waiting patiently in the car (this was when COVID came around and I had to go into the office alone for safety precautions) explained everything to him. We did not put too much thought into it because again, my way of thinking was, there is no wayyyyy this is going to happen to me. However, when I got home, I took my first dose of Prednisone and best believe that hours after taking it, I realized that I was laying down on my left ear, happily watching TV, with NO pain. Which previously, I couldn't do. Not even one strand of hair could touch my ear without feeling intense pain. But Prednisone worked. I felt so much joy. I felt happy that the pain went away. I was jumping up and down with excitement. What I did not realize at the time was that this little pill would eventually do more worse than good to me.

When I followed up again with ENT on 1/28/2022, I mentioned that Prednisone did help with my ear symptoms. She wrote on her notes "RP - but rare in her demographics". (By Demographics, I am a mix of Puerto Rican, Native American and Russian). By February 2, 2022, I was put on another round of Prednisone. The next day, ENT decided its best that I see a Rheumatologist to continue my care since she has done all she could at that point. By February 11, 2022, I went down to 10 mg on Prednisone and my pain came back as well as the swelling on my left ear. That is when ENT decided to increase my dosage back up to 20 mg. By March 1st, 2022, I went back to ENT for another follow up. By then, I finished my last round of Prednisone the week prior and once again, I was back to feeling pain and swelling of my left ear. Luckily, I had an initial appointment set up with Rheumatology a week from that day. And her note for that day stated: "Recurrent erythema and edema of the left pinna responsive to steroids consistent with relapsing polychondritis." I cried when she told me she thinks I have RP but wanted Rheumatology to confirm it as well. I could not believe that this was in fact, happening to me after all. She mentioned that I will no longer take any more medications until I get to meet with the Rheumatologist for a better view of how my ear looked and let them make the final determination if this was in fact RP.

See below for more photos: