Thursday, August 6, 2009

Is This the Best Time to Have Rheumatoid Arthritis? Part 1: Quality of Life


We hear it all the time: “this is the best time in history to have RA.” How true is that? Let’s examine the facts.

But first, what RA-er can hear that said without a reaction of dismay? No one who actually has Rheumatoid Arthritis claims that there would be ANY good time to have RA. Of course, we are too polite to say it that bluntly, but it’s accurate.

"QUALITY OF LIFE"

One study showed that RA-ers who took abatacept (Orencia) had improved quality of life as measured using standardized questionnaires. The patients felt that they could do more. But how much more? Could they do what they could do before the onset of Rheumatoid Arthritis? No. They could do more with Orencia than without Orencia. That is improvement, but it is also relative. Let’s break down that “quality of life” slogan.

How does Rheumatoid Arthritis affect quality of life?

Pain

Pain has an obvious impact upon quality of life. For most RA-ers, treatment with DMARDs reduces pain to some extent. But, there are also answers to what I call Leftover pain. Today there are innumerable medications and therapies to treat pain.

Why do I know so many RA-ers who live in so much pain? I have read research which proves that doctors routinely under-estimate the pain of their patients. Proper pain management would be one of the most dramatic ways in which modern advancements can improve the RA-ers’ quality of life.

Depression

Numerous studies have shown that depression follows Rheumatoid Arthritis like footprints in snow. Rheumatoid Arthritis makes an impression on a life that cannot be ignored. If the RA is severe or not successfully treated, the impression can be deep. Our Rheumatoid Arthritis and Depression post looks at this more closely.

Disability

How can you measure the impact of disability on quality of life? The statistics paint a dreary picture. Researchers say they are difficult to track due to inconsistencies in Rheumatoid Arthritis diagnosis, especially across various countries. (See How is Rheumatoid Arthritis Diagnosed?)

Career-ending disability due to RA is still extremely common. Eighty percent of RA-ers say that every aspect of daily life is more difficult. One-third of RA-ers no longer do the same work within 5 years of diagnosis. After 10 to twenty years, half are considered severely disabled. Two-thirds say they have difficulty getting out of bed. And one-third cannot get dressed on a hard Rheumatoid Arthritis day. (Some stats quoted here on About.com.)

Fatigue

I call RA fatigue the Kryptonite of Rheumatoid Arthritis. RA fatigue incorporates low energy, physical weakness, and rapid exhaustion all in one fine package. If you read What Causes the Fatigue of Rheumatoid Arthritis, you know that studies show that modern Biologic treatments for Rheumatoid Arthritis do reduce fatigue for many RA-ers.

Relationships

There is a frustration in not being able to describe to others the pain, weakness, and disability of RA. Sometimes they are too intense for non-RAers to imagine. This communication problem leads to improper expectations. And worse, the Rheumatoid Arthritis that causes all of these problems is invisible – unless you have x-ray vision.

All of this can bring confusion and disappointment. Difficulty in understanding how grueling Rheumatoid Arthritis is can create a barrier between people. Well people don’t want to hear about pain and illness all of the time; and RA-ers don’t like being misunderstood.

Every day, RA-ers communicate to me their aggravation that people “just don’t get it.” The strain this places on relationships is obvious. Loneliness is too often the result.

Outlook

Rheumatoid arthritis is a progressive disease. So RA-ers know that life will probably get harder instead of easier. Eighty-one percent of us report feeling frustrated that we are no longer in control of life.

Then again, Rheumatoid Arthritis can sometimes have remissions. And some patients with less severe RA obtain good control with drugs. Alternatively, the destruction of RA can be answered with astonishing surgical techniques. So, the forecast of the future is not necessarily bleak. But, it is still rather foggy.

Is this the best time in history to have RA? Tomorrow, in part 2, we look at QUANTITY of life: Mortality and Rheumatoid Arthritis

6 comments:

mallen said...

I agree with your whole post. While I am doing fairly well (not too much pain), I still struggle with fatigue, depression, and the feelings that no one understands. I am single and the biggest reason that I really don't want to "get out there" is that I know my disease is going to get worse, so why bother. Is this the best time in history to have RA? Maybe, but it would be nice to have a cure.

MissDazey said...

Mallen: I have had OA and RA for years. I met and married my hubby after the disability was there. Be kind and gentle to yourself. I can tell from reading your comments, etc that you are beautiful..inside and out. Yes, many people don't understand, but some do. Smile..MissDazey understands, so does Kelly.

PS: To everyone..there are many days I don't understand it myself. hehe

Kelly said...

Understand or not, we are in the same boat together, so at least we know the score!

Mere,
And I agree with your whole comment, too. ;D

jamie said...

Why don't you know that I prayed every night for 10 years, begging to have RA at this time in history!!!!!! Sarcasm intended, of course. What really floors me is that when there is a drug trial, if X amount of patients have 20% reduction in symptoms it is claimed as a successful drug for RA!!!??? Do what???? I know I want more than 20%, how about everyone else?? Excellent blog as always Kelly. Please take care of those fingers. Maybe a voice recognition program would be helpful for you even if you only use it when the fingers are at war with you!! Hugs to all,

Jamie

tharr said...

Hello Kelly,
Kind of makes you excited that we are so fortunate to have RA doesn't it! I understood, after I was diagnosed, that I could no longer do a lot of the things I once did, or if I could do them just not at the same level of intensity. This has been the hardest on me always being active playing football, baseball, working out, racing my mountain bike and motorcycles. I have adapted, not felt sorry for myself and gone on being happy with what I can do from day to day.

But, in my opinion, this is just an insulting statement to all RA patients. Just a marketing campaign designed by someone who does not suffer with RA day in and day out.

By the way, Jamie is right. When I went to school, 20% was an F, not a success!

Kelly said...

Jamie and Tharr,
"20% is an F" - BWHahahaha. ;D Thanks for the laugh.