What is Remission of Rheumatoid Arthritis, Part 3

The Story of Remission

Once upon a time, there was no effective treatment for Rheumatoid Arthritis. Eventually, various substances were found to assuage some symptoms, at least slightly. And then one day, doctors thought they had found a cure in cortisone. However, they soon learned that they were mistaken.

During our lifetime, substances have actually been engineered by scientists to have a great effect upon most people with RA. Symptoms of RA can often be decreased enough to enable some RA’ers to live a life that can appear almost normal – to total strangers anyway. This has brought notions of remission into the scope of treatment goals for RA.

History of RA Treatment Goals

1) The first goal was clear: make Rheumatoid Arthritis patients feel better.
2) Disability was generally treated with surgery.
3) Increasingly, however, the goal of treatment for RA has become to thwart joint damage.
4) More recently, “clinical remission” has become a typical goal of RA treatment.
5) I believe it is also important to discover ways to prevent the harm that Rheumatoid Arthritis does to other body systems in order to extend life expectancy.
6) My desire is to make a cure for Rheumatoid Arthritis the primary goal of research and then treatment.

If we are not sick, why do we still have to take medicine?

Clinical remission of Rheumatoid Arthritis does not mean cure. If you have followed Parts 1 and 2 of this series, then you have realized that by now. Medication can reduce symptoms by a certain percentage. If that reduction is great enough, then it may be labeled “clinical remission.” That is distinct from an organic remission which is spontaneous and not drug induced. Either kind of remission is temporary in almost every case. (See The Four Courses of Rheumatoid Arthritis, Part 1.)

Here is where you are glad that this blog is written by a real live RA’er.

Why on earth do they get to call this remission?

1) RA’ers in clinical remission are expected to continue to use strong medications (including DMARDs and steroids) which have powerful side effects and can cause serious damage. They live with the side effects, expense, and regular blood tests that the medications bring.

2) The damage of Rheumatoid Arthritis can continue during the so-called remission to both joints and other body structures. RA probably will still affect the lifespan of the patient.

3) What if cancer patients in remission had to continue receiving chemotherapy, radiation, or surgery? Would they question the use of the term remission?

Maybe remission is just not the correct word. Since there is a reduction of symptoms, and contraction of some indicators, and a slowdown of the disease progression, I have thought of a better word. If Rheumatoid Arthritis were an economy, they would call it a recession. How about calling it a “clinical recession”?

What is Remission of Rheumatoid Arthritis? Part 2

Clinical Remission

Rheumatology doctors look for something that they call “clinical remission.” And there are several different descriptions of clinical remission. As I mentioned at the end of yesterday’s post, Science Direct has listed 6 different descriptions of clinical remission of Rheumatoid Arthritis.

The American College of Rheumatology adopted a list in 1981 of six criteria. If 5 out of 6 of them were satisfied for 2 months time, that was classified as a clinical remission. In 2007, the ACR adjusted the list and the standard. It is now 4 out of 5 criteria, making it easier to classify people as being in a state of remission. “No fatigue” was removed from the list.

Here is a look at the current criteria:

Complete clinical remission is defined as presence of at least 4 of the following 5 criteria for at least 2 consecutive months:
- morning stiffness equal to 15 minutes or less
- no joint pain by history (meaning according to patient)
- no joint tenderness
- no joint or tendon-sheath swelling
- ESR lower than 30 in women (20 in men)

Note: Please see my recent posts on tests for RA regarding ESR and CRP levels.)

What difference does it make?

Rheumatoid Arthritis can continue to damage the patient.

Researchers are beginning to realize that even patients who appear to be in a period of clinical remission are possibly continuing to experience damage due to RA. According to one study in the Netherlands, “Whether radiographic progression (that is x-ray changes revealing damage) is entirely dependent on the presence of joint inflammation is a matter of debate; some evidence suggests that radiologic progression may continue in patients who appear clinically to be in remission…”

This would mean that the patient should definitely not suspend treatment aimed at forestalling damage. And it would beg the question of whether the use of the term “remission” is actually appropriate to begin with.

The authors point out the obvious need for better methods of detecting joint damage. “Better diagnosis of joint damage will assist in our quest to attain and document full remission in RA.”

Patient treatment

The criteria doctors use to judge the state of Rheumatoid Arthritis in a patient directly affect treatment decisions. Patients who are considered to be in remission are usually assigned a less aggressive treatment protocol. As stated above, unseen damage to joints and other body systems can continue while inflammation appears to have abated.

Here is one example: “Rheumatoid arthritis is a major risk factor for heart attack as a study of 114,000 women indicated. The risk of a heart attack in women with rheumatoid arthritis was double that of other women” (Medterms).

My question: Does so-called “clinical remission” have any influence on this statistic? Mortality rates for Rheumatoid Arthritis say, “No.” See my post on Mortality.

Drug trials

This one is thorny. The criteria that a pharmaceutical company uses for its drug trials make the drug to appear more or less effective. If one drug trial uses a stringent definition of clinical remission, its product may appear to be less effective than another company which uses a more relaxed standard.

An amusing account of ankles.

I read a couple of articles about an interesting debate that took place over the last couple of years. Rheumatologists were arguing that joint counts (swollen, tender, or disabled) ought not include feet and ankle joints. One elaborate study “proved” that it does not matter whether ankles and feet are counted. In other words, there is no difference in the DAS (disease activity score) as it relates to criteria for remission according to NIH.

Read their conclusion for yourself: “…inclusion of ankles and feet only rarely influences the definition of overall disease activity status, especially the presence or absence of remission.”

Here is the funny part. This is a direct quote. I promise you. It is a footnote to the study above:

“Finally, an important clinical consideration should be discussed. The mere fact that ankles and feet have been excluded in the context of certain composite scores does not justify their omission in the evaluation and management of individual patients with RA. In contrast, since their involvement is common and they bear highly important functional roles…”

They are reminding doctors who read their report to go ahead and treat the ankles and feet because they are functionally very useful parts of the body of the person affected. I find it hysterically funny that they consider it necessary to say such a thing.

Or maybe just sad.

Next time: Remission and RA, part 3. We’ll ask, “Are we still sick if we are in remission?”

What Is Joint Protection for Rheumatoid Arthritis

How can we protect our joints?

As soon as the initial shock of a Rheumatoid Arthritis diagnosis wore off, I began to search for ways to make my life as good as it could be. I was ready to fight. One of the things that we fight off is the deformity that is part of the RA package. We have talked about fighting medically. But I also learned very early in my searching that we can do other things to protect and preserve our joints.

I was so glad that I found an article on the Mayo Clinic’s web site about joint protection techniques. That led me to search for even more on the subject. I was shocked that my doctor had not told me that there were actually things that I could do that might help avoid some deformities caused by Rheumatoid Arthritis.

Many of the things on the list are actually things to avoid doing. I remember my own grandfather’s hands. He also had the RA genes. He is the reason that I understood easily what was meant when I read about “ulnar deviation.” I remember how his fingers all leaned out toward the ulnar / pinky side. What’s more, I even remember him doing some of the motions that are warned against in the articles I read!

When Granddaddy stood up, he pushed off using the backs of his fingers. That is a big no-no! He broke 2 rules at once:

(1) Don’t ever use small joints when you can use large ones. For example, he could use an elbow. Or better yet, a forearm and no joint at all.

(2) Don’t ever use the backs of the fingers to push because it drives them in the ulnar direction, encouraging that deformity.

I get plenty of funny looks, but when I stand up, I push off with my arms and let my fragile little hands and wrists alone.

Another one that has been a life saver for me is this: Never tightly grip anything. Do not pinch or squeeze or twist. Ever. Use a light touch. I use all my fingers together as one, avoiding any twisting motion whenever possible. This might mean I get a tool or get help. Often, it just means I’m slow and funny-looking. Whatever it takes.

Here is another basic principle that you can apply lots of ways: Use the largest joint you can to do any motion or no joint at all if possible. Sometimes, I will also go to a lesser used joint or one that does not hurt. You might use your whole hand or arm instead of fingers to carry something, for example. All of this requires that you think before you move. At first this seems awkward, but you can develop your own joint protecting habits pretty quickly and then it becomes more routine.


Here is one more technique I figured out: In describing ulnar deviation, an article stated that the movement to avoid is the motion that is like turning a key. I determined never to do that. At times, my hand was unable to turn a key anyway, so I had my kids turn the key in the car ignition – big thrill for them. Here is what I did: I got a huge key. (You can also get yours wrapped in rubber bands or tape.)Then, I grasp the key like an overhand baseball grip only more relaxed. I use my whole hand to turn the car key away from me. It does not use my fingers at all.

I recommend that you read the whole Mayo guide to joint protection, and Cleveland Clinic’s joint protection strategies for Rheumatoid Arthritis, too.

PS: If you are a “no pain no gain” advocate or believe in “use it or lose it,” you may be in for a surprise. The Mayo Clinic regards pain as a warning for Rheumatoid Arthritis patients to use caution and protect their joints: “Though you may want to work through your rheumatoid arthritis pain, doing so can aggravate the situation.” Similarly, Cleveland Clinic’s article states: “Respect pain. It is a body signal that is telling you something is wrong. Don't try an activity that puts strain on joints that are already painful or stiff.”

Tomorrow, see me in action doing joint protection 24/7.

Is This the Best Time to Have Rheumatoid Arthritis? Part 3: Response to RA Mortality Gap

How should we respond to the mortality gap?

Responding seriously

Rheumatoid Arthritis is an inflammatory disease. The progressive toll it takes upon vital organs is well documented. Science Daily: “Rheumatoid arthritis (RA) is associated with a high risk of early death.” Rheumatoid Arthritis requires the same serious response as breast cancer, diabetes, and heart disease.

Response by physicians

Physicians should not neglect to follow up symptoms in Rheumatoid Arthritis patients because they are “chronically” ill and have many ailments. RA-ers may be viewed as having recurrent and persistent complaints. Health care providers can begin to view them as whiners and neglect to investigate every complaint. However, high blood pressure, anemia, osteoporosis, and pneumonia are just as critical in patients who already plagued with Rheumatoid Arthritis.

Response by everyone

At this point, there is so little general knowledge about Rheumatoid Arthritis that RA-ers themselves must go through a period of learning about RA after diagnosis so that they can pursue proper treatment. Family members and society in general must also be educated about RA and the needs of those who have it. Too often, there are no modifications of expectations for those who are suddenly disabled by Rheumatoid Arthritis. That can make it difficult for RA-ers to obtain the assistance that they need.


Responding with research

Rheumatoid Arthritis also requires the same serious research attention as breast cancer, diabetes, and heart disease. Here are a few suggestions to use research to fight the Mortality Gap and make this a truly better time to live if you have Rheumatoid Arthritis:

• Research ought to begin with a focus upon actual patients.
  


• The target of most research ought to be a cure instead of symptom improvement.
  


• The other goal of research should be learning to recognize early Rheumatoid Arthritis so that it can be diagnosed at an earlier stage.

Post blog personal note: I was thinking, it’s not like we hold anyone hostage and make these ransom demands. In fact, we are the ones who are held hostage – by RA! We feel pretty helpless. I also remember that Jesus said our response to the least in our world represents of our response to him.

Mortality and Rheumatoid Arthritis

Is this the best time to have Rheumatoid Arthritis, Part 2: Quantity of Life

This is the second post in a series which addresses the question, “Is this the best time in history to have RA?” Yesterday, we looked at “quality” of life. Today we look at “quantity” of life, or longevity.

This might be depressing, so, I’ll try to make it brief. I have read some pretty ugly statistics about Rheumatoid Arthritis lately. And some of them are about life expectancy.

Mortality Gap

“Excess mortality” is consistently associated with Rheumatoid Arthritis. Some research shows that the mortality risk for RA-ers is about 38% greater than for the general population. It was even worse for women who have a 55% increased risk compared to women without Rheumatoid Arthritis. And no miracles of modern medicine have changed that.

In fact, when compared with the general population, the mortality gap has actually been widening. That’s right. Rheumatoid Arthritis patients are not experiencing the same improvements in survival rates as their peers without RA.

Mayo Clinic doctor Sherine E. Gabriel said this: "In fact, RA subjects did not even experience the same improvements in survival as their peers without arthritis, resulting in a worsening of the relative mortality in more recent years, and a widening of the mortality gap between RA subjects and the general population throughout time."

Reasons

At least half of deaths of those with Rheumatoid Arthritis are cardiovascular related. Although modern cardiovascular interventions have improved life expectancy for the general population, the same is not true for RA-ers. They say more research is needed to look for the reasons.

I do have some theories:
(1) Recent improvements in cardiovascular disease mortality are related to improved medication, diet, and advanced surgical procedures. Maybe RA-ers do not get cardiovascular disease for the same reasons that others do. So the treatments do not adequately tackle the heart disease of RA-ers.

I also wonder whether:
(2) The heart disease in RA-ers responds differently to those innovative treatments, or
(3) Heart disease in RA-ers is less treated because it is not diagnosed as frequently or as early.

How should we respond to the Mortality gap? Next time, in part 3, we look at how research can aim to make this a better time in history for those who do have Rheumatoid Arthritis.

Sources quoted:
medscape
About.com
Science Daily

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

Do Men Get Rheumatoid Arthritis, Too?

Do Guys Get RA Too?

I have always thought how wretched it is that Rheumatoid Arthritis comes along in the prime years of a woman’s life. She’s either chasing small children or climbing a career ladder. It is heartbreaking that at the time when life is the most demanding, she is disabled. There are no accommodations. No excuses. Nothing can rescue her. Pretty sad, huh?

And then one day, I saw a man who had the same RA that I had. My heart just broke. He stood up the way that I do, pushing off with the elbows. Then, he walked like I do: slow and awkward. So that’s why people stare.

I could overhear him talking with the nurse. He has a family. Oh, my gosh. Of course: he has a family to support. They are counting on him to go to work every single day. And he has no accommodations. No excuses. Nothing to rescue him.

Expectations will be difficult for him to meet - except when they are impossible. His disability will be public. There may be shame and humiliation to go along with horror of the RA diagnosis.

Yes, women are more frequently diagnosed with Rheumatoid Arthritis than men – studies say 75-79% of RA-ers are female. And many studies show that women even experience more severe RA than men. But, men are less comfortable asking for help. And there is more shame for them in being weak.

The gender differences are more than skin deep. Men tend to have more involvement with larger joints. They are more likely to have heart damage from RA. But some studies show there may be fewer bone erosions and eye damage. Of course, no man or woman on earth wants to have Rheumatoid Arthritis, regardless of the where it hits.

I would like to recommend two RA blogs which are written from a man’s viewpoint. If you’d like to hear how a man is fighting Rheumatoid Arthritis, check them out: RA Guy and Living With Rheumatoid Arthritis. We will also discuss this on the Rheumatoid Arthritis Warrior Facebook page.

So much for the battle between the sexes! Instead, we’ve got a real battle to fight against Rheumatoid Arthritis. This time, we are on the same side.

The Four Courses of Rheumatoid Arthritis, part 1

What are the four courses of RA? I had hoped that they would be appetizer, salad, entrée, and desert. But turns out they are not.

The names which I made up for them are Cyclone, Roller Coaster, Avalanche, and Tower of Terror. Maybe I live too close to Disney.

Historically speaking, there are four general courses which Rheumatoid Arthritis can take. These are the general patterns which have been observed over many decades. They describe the course that the disease will take. In spite of individual differences, patients generally fit into one of these categories.

On the day that you get your RA diagnosis, no one sends you an IM (instant message) to tell you which course the disease will choose. However, if you know about the typical patterns, you can probably identify yours within a few years. Arming yourself with information is always a good thing.

The first course of Rheumatoid Arthritis is pretty simple to understand. You get RA and then the RA goes away within six months. The pain and stiffness of RA does not lead to permanent damage. Neither the cause of the disease nor its disappearance can be fully explained medically. Only 5 to 10% of all those diagnosed with RA are in this category.

The second course of Rheumatoid Arthritis is more common – typical of about 15% of RA patients. The symptoms of RA come and go periodically. The peaks are commonly called flares. Periods between the flares (called remissions) seem more like life before RA. It becomes possible to exercise or do things that people who are in the midst of Rheumatoid Arthritis anguish cannot do. However, it is completely impossible to predict when the RA will return.

The third course of Rheumatoid Arthritis is the most common. This pattern is very similar to pattern number 2. The same pattern is seen with flares and remissions alternating. The difference is the damage which occurs because there is always some inflammation, even during the lulls. And the flares tend to worsen over the years.

About 75-80% of RA-ers will never have a complete remission. The third and fourth groups make up that number. Group three is the larger one.

Finally, the fourth course of Rheumatoid Arthritis is one in which there are not remissions. The disease only progresses. There is only flare. Or maybe there are no flares. Depends upon your viewpoint, I guess.