Wednesday, February 24, 2016

Rheumatoid arthritis -- Everything I have learned in the past six weeks.

“When in doubt, nap.” – anonymous quote from “64 inspirational quotes from chronic pain sufferers” at www.thedailymigraine.com.

BY JULIA ANDERSON
The pain first showed up during the holidays in the back of my thighs, really my lower butt. It felt like pulled muscles from what I thought might be the workouts I had been doing with a trainer who was helping me improve my core strength and balance.

Within a few days, the pain had migrated as well to my shoulders and neck. It was shockingly painful to roll over in bed. I couldn’t push myself up or lift my arms without grimacing with pain.
What the hell was going on? Where had this come from?

I found myself some nights at three a.m., sitting in a chair in the family room, sipping tea, befuddled by the pain in my arms from just reaching for the cup. Man, this hurt. I couldn’t bend over to tie my shoes or dry my feet after a shower without pain. I shuffled getting to the kitchen. Lifting my arms to put dishes hurt like hell.

A visit to my physician’s assistant, covering for my regular doctor, generated a preliminary diagnosis of polymyalgia rheumatica. She started me on prednisone, a synthetic corticosteroid drug effective as an immunosuppressant.

With the drug, the pain abated, but not much. I was still shuffling around like an old woman with my anxiety quotient through the roof. Was my life over? Is this it? I started reading up on polymyalgia rheumatica.

It didn’t help that Glenn Frey, co-founder of the Eagles had just died at age 67. Cause? Complications from rheumatoid arthritis. Wow, this is serious.  During those several nights of sleepless pain, I began frantic Google searches -- arthritis, rheumatoid arthritis, polymyalgia rheumatica --- their symptoms and outcomes. Coping methods, medications. Just reading about prednisone and other powerful drug treatments was scary enough for their multiple side effects.

No cure.
Chronic.
Depression, irritability.
Weight gain.
Weight loss.
Shortens your life.
All alarming.

“An autoimmune disorder, rheumatoid arthritis occurs when your immune system mistakenly attacks your own body’s tissues,” the Mayo Clinic Web site explained. “In addition to joint problems, RA sometimes can affect other organs of the body such as skin, eyes, lungs and blood vessels.”  Something called “giant cell arthritis” can cause blindness, stroke.
Treatment focuses on controlling symptoms and preventing joint damage.

This was all news to me. I knew people got arthritis but not me, not this suddenly and not at my age, 69.
It turns out that RA can begin at any age, but usually after age 40 and is more common in women, especially those with Northern European genetics. That’s me. If there is a family history of RA, the risk of the disease increases. Sure. My father had multiple ailments, arthritis among them.

You are not supposed to read up on all this on the Internet but what else was I supposed to do at 3:24 a.m.? Listening to the BBC on public radio gets tiresome. Hey, I’m a reporter.

It took more than two weeks to see a rheumatologist associated with the clinic where I get medical care. That medical care until now had been nothing more than an annual physical.

For women my age, I saw myself at the top of the active chart -- still downhill skiing, working like a dog around my yard, jogging, going to a trainer, riding horses, traveling and rafting rivers. This sudden leap into apparent old age was a shock. Much too abrupt. But after asking me a lot of questions, my rheumatologist gave me hope.

Her working diagnosis was not polymyalgia rheumatica, but a “drug-induced” toxic rheumatoid arthritis reaction. She tells me that I will recover but it will take time, maybe months or longer. Say what? Here’s my story:

Based on her analysis and my own investigations, the stars aligned against me regarding triggers for the onset of this affliction over the past holidays.

While visiting my dentist for a routine teeth-cleaning before Christmas, she discovered gum disease around a back lower molar and recommended I have my last remaining impacted wisdom tooth extracted. Meanwhile, she prescribed Clindamycin (an antibiotic) to knock down the gum infection. Without a second thought, I started popping those pills as my hectic holiday schedule ramped up. Within a couple of days, I began experiencing flu-like symptoms…muscle ache, head ache, fatigue. I had to force myself to complete the 10-day regimen. Clindamycin killed off the gum infection but also messed with the good bacteria in my gut. (Click here for more on side effects of this drug.)

It turns out that the trillions of microbes in my body may play an important role in regulating my health (according to research at NYU). “The immune system, primed to attack foreign microbes, possesses the extraordinary ability to distinguish benign or beneficial bacteria from pathogenic bacteria, said the researchers. “This ability may be compromised, however, when the gut’s microbial ecosystem is thrown off balance.” Does this increase the possible onset of rheumatoid arthritis…they don’t know. More research to come. More on this appeared earlier in Science magazine, click here.

Secondly, I came back from a trip to Italy last fall in love with Italian cooking. In the following weeks, I was eating a lot of eggplant and tomatoes. Turns out that some people believe the chemical solanine in nightshade vegetables (eggplant, tomatoes, potatoes and peppers) may exacerbate or trigger arthritis. But according to the Arthritis Foundation, www.arthritis.org, there is no formal research supporting this and some people may actually benefit from nightshades, the foundation said.

Yes, I have a family history of arthritis but I don’t know if my father’s chronic afflictions were rheumatoid or something else. He died at 80 from congestive heart failure. My mother died at 98 from old age. She had a touch of arthritis in her hands but nothing alarming and certainly not a primary focus of her health care.

So where did this leave me? My rheumatologist is giving me a working diagnosis of inflammatory rheumatoid arthritis caused by “the ongoing use of possibly toxic medication.”  That would be the Clindamycin, followed up by Amoxicillin, prescribed when I had the wisdom tooth out. She has put me on another drug called Methotrexate, which has been used for years to treat arthritis inflammation. The bad news? It can mess up your liver, so you get blood tests every so often to make sure that's not happening.

At the same time I am cutting back on prednisone by 30 percent. We are in a holding pattern on that. In the past nearly three weeks, I’m marginally better, although there was a setback last week when we went down too quickly on the prednisone.

Meanwhile, I am taking Aleve, an over the counter anti-inflammatory, two or three times a day, while trying to protect my stomach from its ulcerative side effects. Generic ingredient in Aleve -- Naproxen sodium. I must check in with blood tests to make sure the methotrexate is not damaging my liver.

Suddenly there are five medications on my bathroom counter instead of one. I am constantly mentally checking on how I’m feeling --- is the pain worse or better, today? Will it stay away or come back, what should I eat to avoid stomach pain. About 20 percent of my brain power is being used up processing and worrying about this condition.

I knew nothing about rheumatoid arthritis until now. It turns out 1.3 million Americans are afflicted with this disease, some of whom are a lot younger than I am.

According to the Arthritis Foundation, arthritis of some type affects 50 million Americans, two thirds of whom are under 65. Some 200,000 cases are diagnosed a year. It is a miserable chronic condition with 100 different variations. Afflictions such as gout, fibromyalgia, lupus, psoriasis, scleroderma, all fall under the arthritis umbrella.

By happenstance, I learned that a former editor of mine has what I have only much worse. He explained that his body literally “freezes up” during an arthritis “flare.” He goes by ambulance to the hospital where he is infused with drugs that within a few hours “loosen” him up. He hates the prednisone for its side effects but as we agreed, “it is what it is” when it comes to the challenges of aging and of rheumatoid arthritis.

My new massage therapist, a younger woman, maybe in her 40s, “lives” with an ongoing rheumatoid arthritis condition. Some days are OK, some days are not, she said wistfully.

What helps? Exercise, diet, rest, stress reduction. I am learning about NSAIDs (non-steroidal anti-inflammatory drugs) and DMARDs, disease-modifying anti-rheumatic drugs.

This is not a poor-me story but a new revelation in a long string of revelations in my life. I cope with stuff by learning about it. I’ve learned a lot in six weeks. For those who may be newly diagnosed like me, you will find comfort is a massive amount of information online. Just don’t get sidetracked by some of the off-beat myths about causes and treatments.  A good rheumatologist can do wonders. Mine seems to be on top of things.

Having said that, I realize that I am in charge of how I manage this, long term. Taking prednisone and methotrexate is only part of the picture. I will need to find my own day to day management program that includes how I take care of myself mentally,  a daily diet that helps, not hurts, and how much rest I get. Right now, I'm still trying to get my head around all this. My doctor told me this week that any signs of improvement could still months away,

On my reading list: Jenny Lawson's "Let's Pretend This Never Happened, released in 2012.
"Living with Rheumatoid Arthritis," by Tammi Shlotzhauer.
"Rheumatoid Arthritis: The First Year," by MEA McNeil.


Here are some of the resources that I’ve found:
Arthritis Foundation, click here.
Mayo Clinic, click here.
American College of Rheumatology, click here.
National Institute of Arthritis and Musculoskeletal and Skin Diseases, click here.
Healthline, click here.
Centers for Disease Control and Prevention,
click here.

No comments:

Post a Comment