My journey to Rheumatology was about to begin. On February 3, 2022, was when the ENT Specialist felt it was time to get input from a Rheumatologist. Therefore, a referral was created, and my appointment was scheduled for March 9, 2022.
As I continue my journey with ENT, on February 11, 2022, I was still on Prednisone. As soon as I would go down to 10 mg, the pain and swelling on my left ear would return. Unfortunately, the dosage was increased back to 20 mg to give me some relief. It sure did help with the pain and swelling.
By March 1, 2022 - It's been a week that I finished the last round of Prednisone. Unfortunately, the redness and swelling on my ear, once again made its return. The ENT Specialist documented, "Recurrent erythema and edema of the left pinna responsive to steroids consistent with relapsing polychondritis." What an unforgettable day it was for me. I walked out the office confused, in doubt, still wondering what RP was, how did this happen, why did this happen, why me.
My appointment with Rheumatology could not have come any faster. Another week of torture, pain, pain that was so unbearable that even one strand of hair made my ear hurt like crazy. I was in so much pain that I had to keep my left ear protected at all times from being touched by anything. March 9 was my first visit with Rheumatology. I walked out of the office in disappointment, scared, lost, in shock. I just did not know what to think. The Rheumatologist had to put me back on Prednisone, 20 mg for another month, then 10 mg for two weeks, 5 mg for another 2 weeks and then, finally come to an end. My next follow up was May 12. Once again, I was not able to go further down to 5 mg on Prednisone, otherwise, the pain, swelling, redness, and inflammation of the left ear would return. I was also put on a new medication called Methotrexate, 6 pills on the same day, once every week (2.5 mg).
I continued to see Rheumatology every two months and prior to every visit, I had to get bloodwork done (the first few months going to Quest was torture, but eventually I got used to it). I remember asking my Rheumatologist the most two important questions that I needed answers too: How did this happen? Again, I heard the same response as that of ENT, "it was always in me. Getting the cartilage piercing activated this rare disease." And my second question was, will I be on medications for the rest of my life? The Rheumatologist response was, "no". I was happy to hear that. But here I am, three years later still taking these medications and on a higher dosage from when I first started.
On April 12, 2022, I began to experience chest pains which led me to go to the emergency room. EKG was normal, x-ray of chest was normal. I was eventually diagnosed with chest muscle spasms.
My next follow up with Rheum was on March 12. Again, being on 5 mg-Prednisone would just worsen my symptoms. No improvements noted since starting MTX, as of yet. Once again, Prednisone was increased to 7.5 mg for two weeks, then 5mg for another two weeks, and then down to 2.5 mg for two more weeks and then stop Prednisone. Two months later, July 14, I saw my Rheumatologist for a follow-up. At this visit, I have not seen any improvement with Methotrexate and Prednisone together. To my surprise, I began to experience bilateral hand pain, shoulder pain and neck pain. I also ended up with an upset stomach since increasing the Methotrexate dosage. In addition, I began to feel rib-cage pain, especially on the left side of my chest. By now, it's been three weeks since I finished my last dose of Prednisone which resulted in my left ear flaring up. However, I refused to go back to taking Prednisone. I did not like the way it was making me feel or look. My Methotrexate was increased to 8 pills in one day, on a weekly basis. I was also prescribed Leucovorin (calcium) 8 hours after taking MTX, and Naproxen 500 mg for the pain. Unfortunately, I was put back on Prednisone: 20 mg for three days, 10 mg for 7 days, and stay on 7.5 mg for one month and potentially move own to 5 mg.
As I said earlier, I refused to go back on Prednisone. I began to experience depressive moods that my mind was on a constant rush of thinking. I did not know what to do with myself. There were times I just wanted to run out the front door of my home and run around through my neighborhood because I felt this sudden burst of energy, my mind was on over-ride 24/7. I had to exercise (recommendation made by Rheum) because I couldn't do anything else to help myself. I would cry because I did not know how to deal with what I was going through, with what I was feeling, and I was ashamed of myself to even tell anyone. Why is a 35-year-old lady crying for no reason. No one would understand. No one could understand. At least that is how I felt. Then, I started looking back at my photos from previous months and noticed that I developed a moon-face. My goodness, this was a huge downer for me too, and I incorporated that into my depressive mood. I could not stand looking at those pictures anymore, I could not stand looking at myself in the mirror. I gained 15 pounds and even when trying to diet and exercise, there was no easy way to lose that weight.
My next follow up was on September 1st. I was able to go down to 5 mg Prednisone because I wanted to desperately stop taking this devil drug. Although, I did see small improvements such as the redness disappearing, the pain no longer felt, my ear just did not look normal. It did not look nothing compared to my right ear. I did tell my Rheumatologist that I began to, what I think was the correct term, "hallucinate" while on Prednisone. I began to experience what I thought were vivid dreams. I would feel that these dreams I would have at night were real because they felt very real. I even began to see figures in my room, which would at first scare me but over-time I got used too. I had to tell myself; this is not real and would go back to bed. At this point, my Rheumatologist felt it was best I schedule an appointment with a Psychiatrist (which I never did). I also started to experience twitching mainly on my left eye but also some parts of my face. By now, I have seen many small purple spots on my legs, thighs and arms along with easy bruising. I was told to stop taking Prednisone and start Rayos Prednisone, which I had to take at night. I was going to be on Rayos Prednisone starting with 5 mg for one month, then 4 mg for another month. Rayos Prednisone, "is the first and only delayed-release form of prednisone. There are generic forms of prednisone, but there is no generic substitute for delayed-release prednisone. RAYOS is different in that only RAYOS releases the anti-inflammatory action of prednisone about 4 hours after taking the tablets" according to www.rayosrx.com/.
My next follow-up was on October 7, 2022. By this time, I was already taking Rayos Prednisone for one month and I was able to feel the difference compared to using Prednisone. Mentally, I felt better. But I did continue to feel tenderness on my left ear, and it was slightly red. I continue to experience night sweats, waking up multiple times during the night to use the restroom, I was feeling tired. I continued with the same dosage using Rayos Prednisone and MTX. By December 16, which was my next follow up, my MTX was increased to 10 tablets total, 2.5 mg, since my left ear was still tender to the touch, was drooping down once again and was more swollen compared to my last visit.
Overall, this year was a year full of trials to see what worked and what did not work, challenges with my own self, self-image, a roller-coaster ride of emotions mentally. I was still in-denial that this has happened to me. I did not want to accept that this is now the new.......ME.
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