Journey to Rheumatology - 2023!

As a year goes by, here I am STILL dealing with this disease. At this point, Rheumatology is still experimenting with the medications, from increasing and decreasing Rayos Prednisone, increasing Methotrexate to see what would work best for me and my symptoms. My main goal and focus were to get off Rayos Prednisone once and for all, and for GOOD. By now, I am taking 10 pills, 2.5 mg of MTX, which I am now at capacity and not able to take any more pills.

January 5th, 2023 was my follow up, my first visit for the year 2023 with Rheum. I did notice I was sweating at night, drenched to the point that I would have to change my shirt, at least every other night throughout the week. For my own sake and to be prepared, I had a clean dry shirt on my bed, ready to put on when I had to change in the middle of the night. I did mention this to the Rheumatologist, and she said its best that I sweat so that my body does not retain any more water caused by Prednisone. This is when I also noticed to my surprise that the left side of my face was more swollen and droopier looking compared to the right side of my face. I wanted to cry when I first noticed how I looked during a zoom call at work. I even took a snip of myself and had to share it with my husband and asked him, my family and some co-workers if the left side of my face looked swollen and slightly droopy, which they all agreed it did. I did go to the ER after work to be safe, but the wait time was so long I decided to leave. Until this day I am still able to notice it, but I try not to make a big deal out of it. This is the NEW ME. Afterall, I have to learn how to deal with my body changes, facial changes and everything about me that changed overtime.

It was hard, very hard to remain positive throughout this experience. My PCP thought that the droopiness on the left side of my face was related to RP, but my Rheum thought the opposite, said its definitely NOT related to RP, since the face other than the nose does not contain any cartilage. I was tested for Lyme disease which turned out to be negative. I am not sure what may have caused this but based on my assumption, it's a mixture of RP and the medications I was taking. That is the only rational explanation I can come up with because BEFORE all of this started, I was fine. I had no issues with my face, I had no night sweats, I did not have mood swings, my mind was not on over-ride, I was not feeling depressed, or sad. So, what could have contributed to this? 

By my next visit, February 3, 2023, I informed my Rheumatologist that my sleep remains disrupted, not only because of the vivid dreams I was having during the night but the urgency to use the bathroom, has been more constant now then it was before. I would say I was waking up at least 6 times a night every night to use the restroom. This was one of the worse experiences I ever went through in my life. I was not sleeping well due to the constant mid-night wake to release my full bladder that I found myself napping after work, which I normally would not do. 

After a year and a half experimenting with the medication dosages of Prednisone, Rayos Prednisone and MTX, and yet, no improvement seen on my left ear, my Rheum at one point had suggested biologics. I had no idea what it was nor what it would do. But it was a term used a few times during my previous visits, if this testing phase did not work out. 

February 22nd, I went to urgent care since I was experiencing congestion, nasal discharge, facial pain, cough, runny nose, sore throat for a little over 10 days. I was diagnosed with acute bacterial sinusitis. Great!!!

By March 24, I scheduled a visit with Rheumatology. I was still experiencing severe night sweats, vivid dreams, constant urination at night, chest pain, heart palpitations, that I just wanted to put a hard stop on Rayos Prednisone. I even started to experience pelvic pain, pain during sexual intercourse (embarrassing to share but not sure if anyone else has gone through this), and severe pain during my menstrual cycle. I followed up with my GYN prior to this appointment and she really had no idea what may be causing pelvic pain and pain during intercourse while taking the medications I was on. She in all honesty told me she has never dealt with patients who were on Prednisone, therefore, she thinks this all came down to the one and only medication......Prednisone and causing the symptoms I was experiencing. 

September 20th was the day I never imagined would EVERRRR come. Due to my joint pain, bilateral hand pain at this point, I was diagnosed with Seronegative RA. I was there speechless. How could this have happened? Is this really part of RP doing what it does best? Is this due to the medications side effects? This is when biologics was officially introduced. Humira, injections, insertion either on my left or right thigh or stomach. My husband was there with me talking with the Rheumatologist. As I sit between my Rheum, to my left and my husband to my right, I felt so helpless, so little, so not myself. My Rheumatologist was explaining how Humira will affect my immune system and bring it two notches down. How I have to be very careful being around sick people. How we are moving forward with this because of many failed attempts playing around with Prednisone and MTX and my diagnosis of Seronegative RA. My Rheumatologist said it, said my case was Rare. My case was way out there. Rare because I had been on Prednisone for a little over a year, yet, when I would decrease the dosage down to 5 mg, my ear would flare up. He said that he has treated 3 patients with RP in his entire life and when on Prednisone, they would feel immediate relief and wean away from it. Nothing else had to be done. Their symptoms were under control. Me, I was a tough cookie to crack. My husband asks, "should we take any precautions such as, have Lori wear a mask, wear gloves, carry hand sanitizer at all times", and my Rheum says, "we have to keep in mind that she is normal, she is normal, she is not sick, she is a normal human being that would continue living life as she has". This is when I felt like an alien, like I did not belong here at all. I know my husband was very concerned and my Rheumatologist, in many ways, was trying to make things feel as normal as possible for me and my husband, even though, at this point they were not. 

As I continue to move forward with Humira and finally saw that my insurance approved it, I almost had a heart attacked. The copay each month was almost $800. How can this be? How can I even move forward with this and pay $800 a month out of pocket for this. Luckily, my husband being the researcher that he is, being very knowledgeable with insurances, programs available for medication, was able to find financial assistance. I applied and was qualified for financial assistance. Thank goodness for the Sandoz One Source co-pay program.

For the remainder of 2023, I was still experiencing the usual symptoms such as bilateral hand pain, chest pain, night sweats, vivid dreams, in addition shortness of breath (diagnosed with mild asthma a few years back, but been doing fine without the inhaler), weight gain from what I can remember. I finally stopped taking Rayos Prednisone for good and the night sweats came to an end, but I was still experiencing vivid dreams for another year. 

November 8th, I did schedule a follow up with my PCP. As I mentioned above, I was still experiencing heart palpitations, frequent urination, chest pain which involved the rib cage, shortness of breath and other symptoms I cannot remember at this moment. All the chest x-rays I have gotten throughout this past year, has come back within normal limits. My PCP felt that the constant rib cage pain was a side effect of starting Humira. But who knows. 

Between October and November, I did start to experience lower back pain. The pain was so intense that at night, I was not able to move from one side to the other. I was not able to get out of bed without my husband assisting me. Even with a light pull from my husband to help me get out of bed, I would scream in pain. This was not normal, at least to me since I never experienced this before. My PCP ordered an x-ray of the spine, and the results came back that I had mild spine arthritis but not severe enough to cause this much pain. I was eventually referred to Physical Therapy, which I did for a little over a month and I felt fine afterwards. However, after about a month later, I did start to feel that lower pain come back. It was not as severe as before, but I did feel that pain, it was on my right lower side of my back. Sometimes, when I would lay on my stomach in bed, it would be hard to move towards either side, but I found the strength to do so. 

The same thought kept playing over and over and over in head......how did I get to this point. How did I get to the point of feeling sick almost every day. How did I get to the point of feeling useless because even making dinner, baking cakes, cleaning the tub would hurt my arms, hands and wrists. How did I become this person. How did I become this person with joint pain, feeling tired most of my time. I wanted to turn back time, stop myself from going to the piercing shop and go back to the old me!