Tuesday, September 8, 2009
Friday, September 4, 2009
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”?
Thursday, September 3, 2009
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.”
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.
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.
Wednesday, September 2, 2009
I always thought that remission was like the Holy Grail – hard to come by. However, I never realized that it was also hard to identify.
When somebody has cancer, he fights for remission. His whole family prays for remission. The remission itself may be elusive, but he knows what it is! It is no more cancer. At least for the time being…
It is not so with Rheumatoid Arthritis. They haven’t really decided what it is. Look at what one rheumatologist said: “To a considerable extent, defining remission in RA is like defining pornography; we have great difficulty agreeing on a definition.”
How many RA’ers go into remission?
That depends upon who you ask.
According to NIH, rates of remission of Rheumatoid Arthritis vary from under 5% to over 16% because of differing definitions. Those ranges are substantiated by much of what I have read. One study reported on Medscape says the remission rate can be up to 20% using certain criteria. Compare that to what one doctor said in Arthritis Today: “If you get treated within two years of the onset of RA symptoms, you have more than a 50 percent chance of achieving remission.”
Is he saying that over half of those who are treated early (during the first 2 years of RA) will get remission?
Alas, I am not a doctor. But, I have read dozens of abstracts and detailed reports on remission. I have never read anything like that, however he qualifies it.
It also depends upon how you ask.
There are various sets of criteria which fulfill various definitions of remission. NIH concluded: “The use of different definitions of RA remission leads to different results with regard to remission rates...”
Two broad definitions with one basic distinction
1) There is a generic understanding of “remission” with a connotation that we all know. One online dictionary defines remission as the “absence of symptoms of the disease and return to good health.” In part, Wikipedia says, “a cure(that) is the end of a medical condition.”
2) There is a big difference between that and what rheumatologists often call “clinical remission.” They are referring to a specific set of criteria which usually does not include the “absence of symptoms” or a “return to good health” or a “cure.”
Hopefully, I did not confuse you. I will leave you today with a link to a wide-ranging set of definitions of remission of Rheumatoid Arthritis. It gives 6 different descriptions of clinical remission with varying criteria. It is at Science Direct.
Next time, we’ll look closer at how the rheumatologists define remission. And we’ll ask why it matters to us.
Tuesday, September 1, 2009
And other weird questions no one will answer…
Many people advise me to avoid stress since it can weaken the immune system. I’m sorry, but there’s just something funny about that. I’ve been sort of afraid to ask, but don’t I WANT my immune system weaker? Don’t I take meds to knock it to its knees? Doesn’t that make stress my friend? If I could just get enough stress, wouldn’t I be cured?
Some of these questions just beg to be asked. They are just too embarrassing to say out loud. Why do medicines for Rheumatoid Arthritis have to make you feel lethargic and gain wait? We can barely move around already. Why can’t treatments for Rheumatoid Arthritis make you lose weight and have more energy like the ones for ADHD?
Here is a really tough one: When I say, “I CAN’T,” why does everyone hear something different? There must be something wrong with the reception. People hear, “I don’t want to.”
Listen, I do not even mean to say, “Well, I would do that, but it would hurt.” I REALLY mean, “I CAN’T do that right now.” I should probably just say it louder. That works with the TV when the reception is bad, right? Just turn it up.
I have more questions: If rest is so good for me, why does it make me so stiff? How am I supposed to sit down and rest when my knees and hips don’t want to bend? If we have made so much progress in the world, how come shoes were custom made to fit in the pioneer days, but there are so few to accommodate Rheumatoid Arthritis?
Another: And why am I told to protect my joints on one page of a “living with Rheumatoid Arthritis” book. And then on a different page of the same book, I am encouraged to exercise using those same joints. Why is the exact same motion considered to be dangerous in one context, but healthy in another context?
More ironic questions: Why do people think if you have Rheumatoid Arthritis, moving to Florida will cure it? (I live in Florida; No go.) Why do people tell us “No pain, no gain”? What are we supposed to gain from pain anyway?
And here’s one: Since there are so many cures for RA on the internet, why doesn’t my doctor know how to cure me yet?
I would like to take a vacation someday. I hope it won’t reduce my stress so much that it would increase my immune activity. That’d be bad for my RA – and really stressful.
Monday, August 31, 2009
Rheumatoid Arthritis is a thief. It steals so much from our lives. Very often that includes the ability to make a living.
There are ripples out from this one issue into every other area of life. Here’s a short list I bet you could add to.
Standard of living
Loss of your productivity to family, employer, and society
My heart breaks from what I hear every day:
One woman left her husband because he could not work any longer. She could not accept his being on disability. Maybe she saw him as lazy because his disability is invisible to her.
One woman I know is terrified of losing her health insurance and her house. Actually, I have heard that from more than one person, come to think of it.
I know one lady who works for a man who will not acknowledge the physical problems her Rheumatoid Arthritis brings. Her boss makes her stand on her feet for hours doing a job which could possibly be done while sitting.
A dear friend of mine still works at her job every day; but I do not know how she makes it through each day. She is literally not able to anything else besides her work. There are fears about how long she will be able to do this.
One person told me she knows she is no longer a “viable” employee so she will be laid off from her job soon.
I know many RA’ers have had to trade down to a job that they like less, but is more suitable.
Then there are many like me (and the restaurant owner in the video) who were self employed when RA disabled them. She said, “Now I feel even if I applied to somebody else for a job, they wouldn’t want me.”
What about you? Let’s begin a conversation on this which may help one another. At the same time, we will be letting the non-RA world see what we deal with.
How has Rheumatoid Arthritis affected your ability to work at a job?
Postblog: I have just noticed that one of the blogs that I follow also wrote a post on working and RA! (Good job Terry.) Here's the link to that blog for a clear view of his work with Rheumatoid Arthritis pain. The blog is called Dual Sport Life.
Friday, August 28, 2009
Here’s what happened.
On July 15, I gave my sincere response to a one page article in Woman’s Day on Rheumatoid Arthritis. Many of you responded to the online version of that same article with comments that were intelligent and straightforward. Some of those comments were good enough to be whole blog posts! And there are over 30 of them!
As I mentioned in that post, I also began attempting to directly respond to the magazine’s editors.
Fast forward to August 21. I mentioned the Woman’s Day article in a blog post on the mythical RA. That day, someone left a url for the author of the article in a comment on the blog. After I checked it out, I did email her directly.
Here’s where we stand.
On August 25, I got a reply email from the author of the article, Judi Ketteler. Judi sent me the magazine’s reply. Here it is:
This was this past Tuesday. That was my first indication that someone at Woman’s Day was going to acknowledge us. I took some time to consider how to react.
A Note from the Editors:Thank you all for your comments. We know that RA can cause severe pain, suffering and disability and certainly didn’t want to undermine that fact. This online story ran as a one-page article in the magazine under our “Checkup” column. The column (and story) is designed to provide a basic primer and is aimed primarily at people who are not familiar with the condition. It’s factually correct and the author interviewed a top rheumatologist. That being said, there are limitations to what we can cover in such a short amount of space. If we cover RA in the future, we hope to include real-life patient stories and provide more detailed information.
What does this mean to us?
Someone close to me used to tell me: Some days chicken; some days feathers. If you’re from Texas, you’ll get it. The rest of us try.
I am predisposed to sports analogies and relate almost anything to football. So, I say: You win some, you lose some.
We lost this way.
The editor’s at WD actually think that what they wrote is “factually correct” and a “basic primer” on “the condition.” It is excruciatingly obvious that they think that they are right. Unfortunately, the actual facts about Rheumatoid Arthritis are evident to us every day.
We won this way.
At least we know the score. Where we stand is more apparent than ever. We have a 2-front war on our hands: 1) We fight Rheumatoid Arthritis in our own bodies and lives. 2) And we fight misperceptions about RA, too.
The WD article hit a hot button with RA’ers because it is an illustration of what we deal with every day: friends and neighbors who misjudge us because of RA; family members who refuse to adjust expectations or offer appropriate assistance; a general public which doubts the serious nature of our illness; employers who fail to recognize our limitations; and certain doctors who view us as weak-willed whiners. My son says, “People misjudge by appearances.”
But we are in the fight. We are on the field. The game is not over.
My original post: Woman's Day Article on Rheumatoid Arthritis
Taking RA seriously: Can Rheumatoid Arthritis Kill You?
On the lighter side: Weathering Rheumatoid Arthritis