Ankylosing Spondi- what??

About a decade or so after moving to New Jersey, I was still living at home, going to grad school, and working full time. I began to have these occasional debilitating bouts of pain. One day, I’d be fine- a typical early 20’s single gal, newly employed at her career, going out with friends; the next day I couldn’t get up off the floor because my body was in so much pain, my ability to move was nowhere in sight.

Because of its inconsistency, I was never at the doctor when I was having a flare-up (what I would later come to know is the technical term for these bouts of pain). I would have a few good days and a few bad days, but I kept brushing it off, and it just became part of my typical day-to-day existence. So ingrained in my life that I hardly noticed when I wasn’t in pain.

One day, I was at the doctor for my yearly checkup, and I was experiencing a flare. I forgot to mention it to him, I don’t know what doctors’ offices do but it’s like some magic portal where you forget all the things that were on your mind as soon as you walk through their doors. As I got up to leave at the end of our appointment, Dr. Levine noticed I was limping. He instructed me to go back to the examination table so he could get a closer look. After examining me for what seemed like something very specific in his mind, he left the room to grab a colleague. Another doctor entered the room and introduced himself as a sports medicine doctor. That doctor proceeded to examine me, measuring my mobility and asking me to rate my pain when he poked and prodded me in certain places. The doctors then discussed that they needed me to see a rheumatologist to get a second opinion.

Off to the rheumatologist I went… On my 25th birthday. I had completed some bloodwork before the appointment, and she was going to discuss the results and what was going on. She came in like a whirlwind. She began speaking words I had never heard of before, rheumatoid, ankylosing, spondylitis, degenerative, arthritis, fusion, biologic medication… without taking a breath to explain a single one. She stated that I had Ankylosing Spondylitis and needed to begin injecting myself monthly with a drug called Humira. She gave me the script, a little pamphlet, and sent me on my way.

I never went back.

I also didn’t go to another rheumatologist like I should have. I waited until I saw my general physician the next year, and he scolded me for not finding someone else to go to. We looked up a few doctors together in my appointment, and he found a doctor specializing in rheumatology with whom he had done his residency. I made an appointment, only for the doctor to say that funny disease again—Ankylosing Spondylitis. He ordered MRIs, bloodwork, and X-rays. 

Ankylosing Spondylitis is a degenerative, auto-immune, inflammatory arthritis that mainly affects the spine, with special attention on the sacroiliac joints at the base of the spine, where the spine meets the pelvis. It is incurable, but it can be managed with pretty serious medication. Left untreated, the vertebrae become so inflamed that they begin to grow new bone where discs should be, eventually leading to a spine which is a solid bone- nicknamed bamboo spine. If one’s disease progresses to that point, their spines often fracture several times on an ongoing basis. The lining of the heart and lungs can also be affected, heel pain with inflammation of the Achilles tendon, as well as inflammation of the eye’s uvea (uveitis). 

What all that information showed was that I did, in fact, have Ankylosing Spondylitis. My sacroiliac joints were extremely inflamed (also known as sacroiliitis), my inflammation markers were through the roof, and my lumbar spine had arthritis, which is unusual for a 26-year-old. I began a strong course of NSAIDs to treat the pain and inflammation. After a few months of that treatment, a golf ball-sized hole had been created in my esophagus. NSAIDs were now off the table while I healed from my esophageal ulcer. Biologics were the next line of defense.

And so began the Biologic merry-go-round. I began trying self-injectable medications meant to suppress my disease from moving forward. I also received many sacroiliac (SI) joint injections during this time, too. One such injection went so terribly wrong that I now require an anxiety pre-sedation drug for any procedure. 

Eventually I had to switch doctors and began seeing a specialist in New York City by the name of Dr. Stephen Paget. He was a godsend. He looked at all the drugs I’d been trying and how I was still in constant pain, how my inflammation markers were still too high. Dr. Paget recommended a drug that I would have to receive intravenously. Nervous, but ready to feel better, I headed into the chemotherapy suite at the local hospital and received medication that said “CHEMOTHERAPY” written on the side. I was scared and nervous to be surrounded by patients who were battling terminal illnesses. It almost felt like I didn’t belong there— what I had wasn’t going to kill me. I’d get my Benadryl drip first to prevent any possible allergic reaction and a Tylenol to prevent a fever. Then, the Remicade would come. This magical medication was supposed to take up to 6 weeks to begin working and I felt a difference the next morning when I woke up.

I was able to take Remicade every 5-6 weeks for 3 years and I got my mobility back. I began practicing yoga and had the ability to move my body in ways I hadn’t in years. Unfortunately, as quickly as it started working, Remicade stopped working. When I returned for my next infusion, my inflammation markers were higher than ever and I felt like it. It was time to venture a try with another medication. 

After more than a decade of battling this disease and having taken almost 10 different medications to treat it, I’m now on a self-injectable drug called Taltz. I take it every 4 weeks and I inject it into my belly if we’re not doing any fertility stuff at that time, otherwise my husband will inject my upper arm.

I don’t love my current medication, but it keeps the inflammation markers down. I certainly feel like I still have inflammation all over my body most days, but it’s manageable. I go to acupuncture and pain management, and I still practice yoga every morning to make sure my day begins with gentle movement.

I will live with this for the rest of my life. I feel grateful to have my husband who will look up anti-inflammatory recipes and encourage me to keep moving when I feel like melting into the couch. 

Now that we’ve added infertility into the mix, I can’t help but think that all those MRIs and X-rays radiating down right through my reproductive organs for years in my 20s and 30s had to have had some effect. Unfortunately, that’s not something I can do anything about at this point. I’m just dealing with the consequences of those decisions made so long ago.