What is Remission of Rheumatoid Arthritis? part 3
The Story of Rheumatoid Arthritis 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”?
Recommended reading:
What is Remission of Rheumatoid Arthritis? Part 1
Should Rheumatoid Arthritis Patients Exercise, Part 2
What Is it Like to Have Rheumatoid Arthritis? Part 1: The Usage Principle
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Your site looks different! (I see the note on the bottom!)
I agree that Remission is not the best word choice. I sometimes lose track of myself and think that I may somehow get better, and then I remember that I am going to be dealing with this condition for the best of my life – Reality for you. That alligator picture is one I can relate to. Someday, there will be a cure, if not our lifetimes, for future generations – that is my hope.
I like the new site and wordpress is great (I just started using it instead of blogger for my new blog and I really like it).
I wish that doctors would try to get to a better standard of reduction of symptoms as well, since at the moment at least, mine is content for me to be in more pain than I am really ok with. He considers me to be “in remission” (or he did until about last month when I had a mjor flare) but even before that I had nearly an hour of morning stiffness and a fair amount of pain on certain days, and I am an RA “newbie” if you will. For a while I was almost pain free and I did have a marked increase in energy, but they couldn’t maintain that. (though it was great while it lasted
) So it seems there is also a need, not just to change the terms they use, but also to define the clinicial definition of them in way that might better match the patient’s way of life….I hope that made sense….
Great comments!
Valeska, welcome aboard. It made good sense to me. I do not agree with what they are doing either. Your story sounds very familiar to me…
“Clinical recession” – Yes, that sounds more accurate! Or how about “clinical repression” since the so-called “remission” requires active force (chemicals, lifestyle sacrifices, etc.) to hold down symptoms and damage from continuing disease activity.
I have a mental picture of an army holding back an attacking enemy, with varying degrees of success, but can’t think of the military term…
I am MORE than “glad that this blog is written by a real live RA’er.” I thank God for your blog, and thank you for giving a voice to RA’ers. Some people have a gift for being able to put things into words. In the complex world of RA, you are one of those people!
I’m right there with ya!!!
Kelly, first off I’d like to say I like the new look.
I agree and have felt this way for several years. My wife’s cousin has JRA and my wife and I got into a heated debate over the fact that his doctors told him he was in remission. This term is wrong and the way the medical field deals with us is wrong. I’m glad you brought this up. It’s frustrating being on our side of this.
OK, first: I am getting self conscious about ya’ll saying the blog looks good. I have not installed a theme yet (using whatever was the default) – so, what will ya’ll say when the wallpaper goes up? ;D
I wish I understood the motivation behind the eagerness to label folks as in “remission.” This is one of the mysteries which keeps me busy.
I’m so glad I found your blog (through a link on the facebook group). I asked my new rheumatologist, who’s the head of rheumatology at my hospital, what his definition of ‘remission’ was the last time I saw him, because he kept telling me I was in it. He said it meant having no actively flaring swollen joints. That is, no swollen joints that he can see. I was absolutely furious at his answer. Just because my wrist isn’t the size of a grapefruit means that I am fine? Not the case. The scary thing is that his philosophy seems to be the less medication the better as long as you’re in ‘remission’.
I like ‘repression’ or how about just plain I feel better than last month, better enjoy it while it lasts!
Looking forward to reading more well-written, well-researched, well-thought out posts!
Thank you Lydia!
I agree with you that it is completely ridiculous. I wish I understood the motivation to say that we are so much better than we are. What is to be gained?
Here and there, I am finding more and more evidence that many are like you: experiencing less swelling, but still having the same disability and pain. Since it makes me feel “furious” also, I am not giving up until I find answers.
Good luck to you.
I would still like to stick to the term ‘remission’. It would keep reminding the treating rheumatologist of his goal. Diagnose a patient early, treat her agressively & I’m sure the patient would go into meaningful remission.