Having rheumatoid arthritis (ra): one person’s perspective

It’s been a while since I’ve written. Life is still hectic, maybe more so than ever. I watch my two granddaughters two days a week and work 25-plus hours as well (actually, more like 30-plus) from home.

The biggest news is that in April of 2023, I was diagnosed with rheumatoid arthritis. For those who are unfamiliar with it, RA is an autoimmune disease, a condition in which a person’s immune system mistakenly attacks healthy cells. The immune system is supposed to work for us, but turns on us and works against us (kind of like the new administration in Washington, but don’t get me started).

The disorder I have, RA, mainly attacks the synovial lining within joints, although other body parts are also involved. There is no stopping it, but there are ways to slow it down, namely with medications. I am on an injectable immunosuppressant and methotrexate (MTX).

My disease is up and down. I had been seeing a rheumatologist for four years before my blood markers actually showed I had RA. For years, I had had symptoms of something: carpal tunnel syndrome in both hands, migraines, knee problems, TMJ (temporomandibular joint) disorder, and more. Many of these, I just chalked up to aging or as isolated events, although I had thought something more was going on, something bigger was behind it all.

In the winter of 2023, that something definitely wanted to be noticed and labeled. At that time, I would wake up stiff. My left arm was bent, my knees were buckling as I walked, I was so stiff and in so much pain that I had to take the stairs one step at a time while holding the railing (and I was still trying to be a caregiver to my toddler granddaughter).

I made a new appointment with my rheumatologist and asked for all the tests to be run again. She, and the doctor who was working with her under a fellowship at the time, agreed. My RF (rheumatoid factor) was 250, while normal is less than 15 units per milliliter (U/mL). But the clincher was my anti-CCP (anti-cyclic citrullinated peptide) test, which often puts the nail in the coffin, so to speak, on people with symptoms of RA who also have clinical presentations of the disease. Normal is 20 U/mL. Mine was nearly 1,000.

From there, I was immediately put on prednisone for a few weeks, which caused bloating and weight gain, but I looked at it as a miracle drug: Nearly immediately, it took away my pain and stiffness. I couldn’t believe it was possible. I was also started on methotrexate. I believe it was eight to 10 pills a week. MTX is a form of chemotherapy that is used at low dosages for autoimmune diseases. After a few months of experiencing side effects (namely, hair loss, a purpura rash, and heartburn). A few months later, I started a biologic. I had no side effects from that, but symptoms would still arise on occasion, such as trigger finger.

I also went to physical therapy. I had an excellent PT at a nearby facility. My knee and my elbow both improved tremendously.

I’m considering going back to PT because I have developed some new symptoms. A month ago, I started to get cervicogenic headaches. This head pain originates in the cervical spine (the neck) and travels up the back of the head to the top and behind the eye. I went to my neurologist a couple weeks ago, and my physician’s assistant gave me corticosteroid injections. (He’s a pro, having performed many injections on me when I had carpal tunnel syndrome. Incidentally, I had hand surgery with my orthopedist a few years ago: both hands, with surgeries being about a year apart.)

The shots, which went directly into my scalp and shoulder, helped with the head pain, but I still feel it in my neck and the traveling pain to my head hasn’t stopped completely. I mainly feel it when I lie back and a bit upright to read. Sometimes, I still feel it when trying to sleep. I bought a special pillow, which actually is helping.

I asked my PA about getting an MRI so we can see what the cause is. I had that on Monday and got the report back yesterday. In some of my joints, I have severe stenosis, as well as bone spurs and degeneration of the discs. Although I haven’t gotten a review of the report by my doctor, from what I can gather, the stenosis is putting pressure on the nerve that travels up my head. This is what I will need to go to PT for. My lower back is a problem, too, though, so I will have to learn how to exercise both areas, I suppose. I read that massage is also very good, which is the best part of PT, by the way.

I have had so many medical appointments, I feel like an 80-year-old at times. I see my rheumatologist tomorrow, my dermatologist next week (I have developed a rash with plaques on my face; it may be due to the biosimilar I was switched to), and I need to get a DEXA scan, as well as see my dentist in June. I had a tooth resorption, in which the bone deteriorates from inside. That tooth had to be pulled, and I now need a partial plate (speaking of 80-year-olds). Yet another symptom of RA, as is the cervical spine problem.

This is my life in a nutshell right now. I plan to keep track of my progress (or regress, if that’s the case) in these pages. Till next time, at which time I want to discuss my possible career downsizing, meaning I’m thinking of cutting back on work, which may be exacerbating my symptoms (so many hours spent upright staring at a screen).