My rheumatoid arthritis -- if that's what it is -- four years on

BY JULIA ANDERSON
 
Four years ago this week, I began experiencing pain in my butt. Actually, a bit lower where my butt muscles and upper thighs overlap.  It felt like sore muscles from intense exercise, only it kept getting worse.
 
Over the next week, the pain showed up in my shoulders, arms and ankles. It became so bad that I couldn’t turn over in bed without groaning in pain. I crawled from bed to the toilet on my hands and knees to avoid pain. I couldn’t lift my arms to put dishes in kitchen cupboards, I couldn’t lift my legs to dry them after a shower. All because it hurt like my joints were burning up.
 
I used my fingers to “pull” my arm forward along a table top to grip a cup of coffee to avoid the pain in my arms and shoulders. At the worse of it, my walk became a shuffle. I was frightened, depressed and hurting.
 
A physician’s assistant diagnosed my condition: Polymyalgia Rheumatica. She put on me on prednisone (a steroid) and methotrexate, the go-to drugs for severe arthritis. She referred me to a rheumatologist, but the appointment was a month out. Since then my diagnosis has evolved to rheumatoid arthritis, then psoriatic arthritis, or both. Turns out there are 100 different kinds of arthritis and no two individuals may experience them the exact same way.  
 
For those unfamiliar with RA here’s the definition: It is the most common type of autoimmune arthritis caused when the body’s immune system turns on itself and begins attacking healthy tissue. It is not curable, but treatments can stop (or reduce) pain and swelling. (www.rheumatology.org)
 
In those first months, I was burning up Google finding out about this disease. Who got RA or polymyalgia rheumatica, why did it happen and what treatments might work? I learned I was a prime candidate for RA: Female, white (Northern European), near age 70 with a genetic history of arthritis in the immediate family. Check.
 
In learning about RA, I realized that I was lucky.  RA can attack people much younger, even children. It can wreak havoc on the body by going after tissue and bone that may result in surgeries, chronic pain, difficulties in walking, climbing stairs.
 
When I first learned of my diagnosis, I casually mentioned my situation to a well-meaning “friend” who was a nurse. Her immediate comment shocked me. “So sorry for Ken (my husband), he’ll be pushing you around in a wheelchair.” Thoughtless on her part? Yes!!
 
But four years later, so far, so good. I’m not in a wheelchair and don’t expect to be for a long time. My primary care doctor said I likely would die of something else before finding myself an invalid.
 
In fact, my fourth year with this disease has been my best. I ran a 5k fun run this fall. I trained on the tread mill for it and came in first in my age group. Full disclosure: There were just three women over 70 in the run. Only 14 people (men and women) ran it out of about 135 total. I was surprised by the low number.
 
A five-day visit to New York City in the fall had me walking all over town to museums, parks, the Empire State Building. My husband and I haven’t slowed our pace of travel that this year included a coast-to-coast ride across the U.S. on his motorcycle. Lots of getting on and off the machine.
 
It’s a long way better than where I started.
 
The first year meant stopping the prednisone, which I hated for the weight gain, sleeplessness and depression it caused. After trying several drugs in combination with methotrexate, we settled on just methotrexate, which suppresses the immune system. As the RA symptoms began to recede, a bout of sciatica down my right leg meant dealing with another round of intense pain. That resolved after two injections of cortisone in my lower back.
 
I began doing stretch exercises to reduce back and neck pain. I walked. I kept a pain chart with RA pain ranging from a high of 7-8 to a low of 5. The chart helped my rheumatologist continue to tweak medications and treatments.  The sciatica pain had a separate chart in the 8-9 range. That pain meant gasping for air from pain every time I got out of the car. I became careful in how I moved.
 
My doctor prescribed 25mg daily of diclofenac to reduce inflammation and resulting pain. I went to a physical therapy clinic to help with the sciatica and a chronic stiff neck. I stopped taking sulfasalazine in combination with methotrexate. After reading the side effects of diclofenac, I cut my intake to only as needed.  (Not often).  I worry about heart disease and my blood pressure is on the high side. Diclofenac can exacerbate those problems.
 
My pain chart began to show real improvement toward the end of the first year. Since then my doctor suggested that I increase my folic acid tablets from two daily to three to combat nausea on the day, I take the methotrexate once a week.
 
She sent me to a pain clinic for help with the stiff neck issue. The PA there gave me three “micro” shots of cortisone, which more or less solved the problem. I do shoulder rotation exercises at home using a “rubber band” to keep things from freezing up.
 
In years two and three, my doctor began to further analyze my symptoms and suggested that I may have psoriatic arthritis instead of regular RA or a combination of the two. I don’t have the scaly skin patches that are typical with psoriatic arthritis except on my elbows, but sometimes joint problems show up first. I certainly have intermittent lower back pain that comes with psoriatic arthritis along with stiffness. Sometimes my ankles and finger joints hurt a lot.
 
In summary: At the end of these four years, I am living with arthritis pain at a low level that does not interfer with my daily activities, travel or yard work. I do have fatigue. I do have pain spikes. I take aspirin or Tylenol as a preventive before engaging in heavy exercise. I do worry about where I'm headed, long term.
 
I tried cutting back on methotrexate earlier this year but found out I need the prescribed 8 tablets weekly to maintain the low 1-2 pain level. Sleeplessness can still plague me. I can’t drink red wine without consequences.
 
Psychologically, I have my confidence back. I can live with this disease and feel lucky that I am better off than most. Getting daily exercise is a key to my well-being…lower pain levels, better sleep, better weight management.
  
What triggered my RA/psoriatic arthritis? I have theories:
My dentist put me on a high dose of antibiotics to combat an infected wisdom tooth just prior to the rapid onset of the acute RA. The drug killed my gut bacteria. They say there’s a connection between gut bacteria and RA.
 

• I was eating a lot of eggplant and tomato sauce after a trip the prior fall to Italy. They say eggplant, tomatoes, peppers and potatoes (nightshade family) can increase arthritis symptoms.

 

• I am convinced that my father had undiagnosed RA throughout his life, which worsened in his last years. He was wheelchair bound and in constant pain. Everyone thought it was heart failure, but my view is that he had un-diagnosed RA with secondary issues.  So, genetics is a factor for me.

 

• As a woman, I am more prone to arthritis. Two to three times more likely than men to get the disease.

 
My advice for those living with arthritis:
Find a doctor you trust, work with that doctor over the long haul. Keep a pain chart and track other symptoms. Know that improvement comes and sometimes goes.
Believe that you will get better knowing that it takes time. Mental outlook is key.
Exercise: job, lift weights, do isometrics.
Change your diet. Don’t drink.
Get sleep. Work with your doctor to get help.
Enjoy every minute of every day!!!