Comments on: What is Remission of Rheumatoid Arthritis? part 3

By: Kelly Young

Kelly Young — Sat, 12 Mar 2011 16:53:23 +0000

Believe it or not, I’ve been in a similar situation – accused of not having it because of fickle bloodwork or since the “right” joints didn’t appear swollen in the “right” way (top) from across the room – more than 1 rheumatologist has said such ridiculous things to me. THEREFORE, it makes it easy for me to say, I know your story is incredible, but “I BELIEVE YOU!” I wish I could say that this is rare, but I hear these things from patients a lot.

And thanks for sharing your “remission” experience. It seems like RA is predictably unpredictable & it helps others to read your story.

By: LetsDance

LetsDance — Sat, 12 Mar 2011 03:02:40 +0000

The rheumatologist who told me that my blood work indicated that I did not have RA, and never did (despite being diagnosed at a reputable AFB and at Duke University Medical Center, and by several other doctors), and thus led me to believe that I was in remission (though she never used that word, because I’d never had RA, remember?) and needed no treatment…had severe RA. I’m still shocked, 8 years later, that someone with RA could do this sort of thing to a RA patient. She sent me out of her office while I was in extreme pain. One of the nurses even told me that I was “white as a sheet” as I was leaving.

Believe it or not, that was one of the most devastating things that had ever happened to me. She was absolutely puzzled why I was crying when she told me that. How could I possibly be sad that I didn’t have RA?

She took away my enemy. I no longer knew what I was fighting. It was like swinging away in the dark as something was attacking me.

The symptoms did eventually mostly go away, and I was “okay” for the past few years, but a lot of damage had been done by that time, so I still lived with a lot of pain.

By: drakerkar

drakerkar — Thu, 24 Sep 2009 18:03:25 +0000

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.

By: Kelly Young

Kelly Young — Thu, 17 Sep 2009 19:31:29 +0000

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.

By: Lydia

Lydia — Thu, 17 Sep 2009 17:59:05 +0000

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!

By: Kelly

Kelly — Sun, 06 Sep 2009 22:54:53 +0000

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.

By: tharr

tharr — Sun, 06 Sep 2009 22:24:52 +0000

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.

By: Rachel McLeod Spainhour

Rachel McLeod Spainhour — Fri, 04 Sep 2009 20:09:29 +0000

I’m right there with ya!!!

By: Caysea

Caysea — Fri, 04 Sep 2009 18:14:40 +0000

“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!

By: Kelly

Kelly — Fri, 04 Sep 2009 17:03:35 +0000

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…