Friday, January 13, 2017

My rheumatoid arthritis: One year on there are still lots of questions, no clear answers

"Trouble has no necessary connection with discouragement. Discouragement has a germ of its own, as different from trouble as arthritis is different from a stiff joint." -- F. Scott Fitzgerald, American novelist regarded as one of the greatest American writers of the 20th Century.  (1896-1940)

Editor's note: For another first-person experience with polymyalgia rheumatic (PMR) from Washington Post writer Alice Reid (Jan. 14, 2017). Click here.

A year ago, I was diagnosed with rheumatoid arthritis. My symptoms were most typical of polymyalgia rheumatica…a type of RA that causes muscle pain and stiffness, especially in the shoulders.

The condition came on in a matter of two weeks. At the outset, it was so bad that I could not roll over in bed without crying. I could not lift dishes out of the dishwasher. I couldn’t wash my hair without gasping with pain when I lifted my hands to my head. Walking became a shuffle.
Terrified, I saw a physician’s assistant and then a rheumatologist.

First the good news. My condition, a year later, is much improved!

The RA symptoms are still present but I describe them to my doctor as similar to discomfort from strained muscles in my shoulders and thighs. Occasionally, the inside of my wrists hurt. I have little or no swelling in my hands. I am back to doing most of the things I like to do such as traveling and, this winter, downhill skiing.

But I am aware that I have this problem that comes and goes, but never completely goes away.
I take methotrexate, an RA treatment standby, as well as a prescription anti-inflammatory drug (NSAID) called Diclofenac.

The problem is that I am NOT pain-free.

My doctor wants me to be pain-free because the pain indicates that the disease is still “active” and working on my body. Long-term that could mean trouble, debilitating trouble.

After a year of tracking these symptoms, looking at my blood test results and seeing me during regular office exams, my rheumatologist is still not sure what version of RA I have. Some of my symptoms suggest polymyalgia rheumatic but I also might have psoriatic rheumatoid arthritis or something else.

What is it?

According to a Mayo Clinic web site, polymyalgia rheumatica almost exclusively affects older adults with the average age at onset of 73. Women are about two times more likely to develop the disorder. And polymyalgia rheumatica is most common among whites in northern European populations. With the last name Anderson, you can guess my genetic background. I’m 70.

They also say that rheumatoid arthritis is more common in people whose parents may also have had the disease or some form of arthritis. That would be my father.

The broad definition of rheumatoid arthritis is that it is a chronic inflammation disorder that can play havoc with more than just your joints. It occurs when your body mistakenly “attacks your own body’s tissues,” mainly the lining of your joints. This in turn eventually causes swelling that results in bone erosion and joint deformity. There can also be trouble with other systems...your eyes, your ears, cardiac system, gastric system. Really concerning.

Glen Frey, Eagles co-founder and band member, died about a year ago (2016) from complications (pneumonia) related to rheumatoid arthritis and the immune suppressing drugs he was taking for it at the time of his death at age 67.

At the time, Marcy O’Koon, senior director for consumer health at the Arthritis Foundation, told The New York Post in an online report that with immune-suppressant drugs “you are vulnerable to infection, in fact, speaking to RA, you’re more vulnerable to infection anyway. That’s something people have to watch out for and contact their doctor at the first sign of fever, she said.

O’Koon also said that those who suffer from the chronic inflammatory disorder have to weigh the many life-changing benefits of strong drugs that treat the disease against their nasty side effects.
That is what I’m doing, right now.

Looking at Humira

After a year of trying several other drugs (Leflunomide and Sulfasalazin) in combination with methotrexate with no clear satisfactory (totally pain-free) result, my doctor is now talking about Humira.  She called it a “miracle drug” and said that many of her patients found it very helpful.

Humira is a leading anti-inflammatory drug (also known as Adalimumab) used to treat symptoms and prevent the progression of active rheumatoid arthritis and something called ankylosing spondylitis. That’s another inflammatory disease that affects the spine and sometimes, the eyes. (It turns out there are many different kinds of rheumatoid arthritis, which can affect children and young adults, as well as seniors, like me.

There are big trade-offs in using Humira (known as a biologic drug), and it is not just its high cost.

This drug can lower your white blood cell count, which increases the chance of getting an infection. It also lowers the ability of your blood to clot. This is serious stuff: When using Humira you are supposed to even be careful brushing your teeth or using dental floss. You are not supposed to touch the inside of your nose or your eyes without washing your hands.

And you are “to avoid contact sports or other situations where bruising or injury might occur,” says the Mayo Clinic drug report. Then there’s the higher risk of cancer including lymphoma, leukemia, lupus and nervous system problems, according to the Mayo report.

Since neither Medicare nor my cheap Medicare-advantage plan cover the cost of this medication, I was told that my personal cost to buy Humira for a year would be about $10,000. At the peak, it would cost me $4,800 a month. That’s something to think about.

Considering my options

Like a lot of things related to rheumatoid arthritis, there are no clear cut answers for what exactly is going on with my autoimmune disease or how exactly to best deal with it. As I see it, my options are to: continue with the methotrexate/Diclofenac combination and endure some RA discomfort. Or figure out a way to start taking Humira with all of its precautions and side-effects with the hope that I would be pain-free and slow the progress of this disease. (Just read through comments on a Humira user review Web site. Some of the comments were really scary).

My doctor also suggested that I reconsider taking a bit of prednisone in combination with the methrotrexate. But I hate prednisone for the side effects…weight gain, puffy face, sleeplessness…depression. All lovely. For a rundown on all this stuff, click here.

My last thought: I have new sympathy and respect for people living with rheumatoid arthritis (about 1.3 million). It means varying degrees of chronic pain. It means fatigue that comes and goes without much reason.

It means having good days and bad days with little true understanding from those who don’t have it and/or don’t know about it.

So my RA journey continues. I feel lucky in many ways that rheumatoid arthritis has only lately entered my life, that my pain issues are much improved and that there are options and drugs in the arsenal that my doctor has yet to use to continue to give me the life I enjoy.

Why do autoimmune diseases affect women more often than men? click here.
Humira user forum, click here.
Cost of Humira, click here.
Beating the high costs, click here.
Ways to beat the high costs, click here.

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