Well, my ankles are useful although I never know how well they will function. In fact the last doctors visits I’ve had, with 3 different doctors and a nurse practitioner, my ankles were swollen double. None of them would say for certain what caused it, all said it was a combination of all that ails you..(in more medical language, of course.)
I don’t understand most of the medical stuff, just over my head. Most of the time just happy not to understand it. In fact I couldn’t explain the term “a flare” to a friend
Great post! (the last one was too). I’ve had RA for more than 20 years. About 10 of those were spent in “remission.” Toward the end of the 10th year I developed a lumpy “pannus” on the outside of my right wrist — very little pain involved. The orthopedic surgeon I was sent to told me that indeed, RA could continue to damage the joints and other parts of the body while it was in “remission,” and here was the proof of that. The pannus was surgically removed to preclude the eventual impairment of that wrist and hand. And now, a couple of years later, the RA is severe and active again.
I didn’t take any RA meds during the last several years of the original, active stage, nor any during the remission. I’m back on them now — they’re a lot better than they used to be. I’ll know better now, if the disease goes into remission again, and I’ll keep taking the RA drugs. What a strange disease it is!
If they don’t include my feet and ankles, I’m immediately 40-50% better. I have severe damage in both feet and ankles from RA (and I have broken my right ankle twice racing), how could they exclude these in their study?
tharr,
It’s actually worse than that.
They do not exclude them from the study.
THEY ARE EXCLUDING THEM FROM YOUR DISEASE ACTIVITY SCORE (DAS) which they use to judge how active is your RA is.
what about that?
btw: this is the tip of the iceberg. At least they are saying that those joints can be counted for your “treatment”!
Wren,
Great info. Thanks for sharing your experience for the newbies who come along to check this out. It’s so hard to learn so much to be able to manage RA…
Welcome to WordPress Kelly! The Cadillac of blog sites.
I laughed when I read the ankle bit. I’ve had achilles surgery on both ankles and I still have problems with them. In fact, it was once of the first signs pointing the doctor to RA.
Sometime my pats. say: I forgot, you aren’t interested in my ankles & I always reply: I’m interested but later, that is after DAS.
I believe that there’s continuous damage, ever after stopping inflammation, if there is already structural damage. That’s running like an accelerated osteoarthritis — but I don’t have the means to verify this hypothesis.
Dr. Kirsch,
That is so funny. The first part, I mean.
If we (the doctors, researchers, the drug companies, everyone!) do not listen to the patients’ description of their condition, how would we ever find the answers and a cure?
Yes, we need to address inflammation, but you are correct. There is more going on even when inflammation appears to subside.
Interesting, but why would any RA specialist not include ankles and feet when discussing RA? That is an insane concept. Also, I have had joint pain with an ESR of only 28, with little swelling. My joints feel like they are slightly sprained. The extremely severe pain happens at a higher level, but try walking around for any length of time feeling like your joints are slightly sprained. That can wear on a person as well.
It’s all kind of strange from the patient viewpoint. I know they sometimes laugh about it, assuming all doctors treat all joints anyway, but it’s hard to reconcile that so many important joints are left out specifically or under-valued in the diagnosis criteria as well. Read more on the ACR site here.
Should we count feet in? LOL! My RA started in the mid-foot, and I had erosions and deformity by the time the doc figured out why my feet had been so sore for 18 months. Oh, but my fingers and toes are just fine!
I can surely attest to feet bearing highly important functional roles!
I don’t understand this. Why would ankles and feet be left out? My feet are consistently the worst symptom I have. They were the first symptom I had and were the reason I began seeing doctors that led me to an RA diagnosis. I have days where I can barely walk. In my own mind, I won’t be “better” until my foot pain is gone. Why on earth would my number one symptom not be considered in a DAS?
I’m new to this thread and as it happens having quite the uncomfortable day if you get my drift AND I’m laughing my head off!
We RAers are Hysterical in the face of some really dumb guidelines.
I type this wearing wrist splints on my sofa with my feet which are FLARING.?
Well, my ankles are useful although I never know how well they will function. In fact the last doctors visits I’ve had, with 3 different doctors and a nurse practitioner, my ankles were swollen double. None of them would say for certain what caused it, all said it was a combination of all that ails you..(in more medical language, of course.)
I don’t understand most of the medical stuff, just over my head. Most of the time just happy not to understand it. In fact I couldn’t explain the term “a flare” to a friend
Great post! (the last one was too). I’ve had RA for more than 20 years. About 10 of those were spent in “remission.” Toward the end of the 10th year I developed a lumpy “pannus” on the outside of my right wrist — very little pain involved. The orthopedic surgeon I was sent to told me that indeed, RA could continue to damage the joints and other parts of the body while it was in “remission,” and here was the proof of that. The pannus was surgically removed to preclude the eventual impairment of that wrist and hand. And now, a couple of years later, the RA is severe and active again.
I didn’t take any RA meds during the last several years of the original, active stage, nor any during the remission. I’m back on them now — they’re a lot better than they used to be. I’ll know better now, if the disease goes into remission again, and I’ll keep taking the RA drugs. What a strange disease it is!
If they don’t include my feet and ankles, I’m immediately 40-50% better. I have severe damage in both feet and ankles from RA (and I have broken my right ankle twice racing), how could they exclude these in their study?
tharr,
It’s actually worse than that.
They do not exclude them from the study.
THEY ARE EXCLUDING THEM FROM YOUR DISEASE ACTIVITY SCORE (DAS) which they use to judge how active is your RA is.
what about that?
btw: this is the tip of the iceberg. At least they are saying that those joints can be counted for your “treatment”!
Wren,
Great info. Thanks for sharing your experience for the newbies who come along to check this out. It’s so hard to learn so much to be able to manage RA…
Welcome to WordPress Kelly! The Cadillac of blog sites.
I laughed when I read the ankle bit. I’ve had achilles surgery on both ankles and I still have problems with them. In fact, it was once of the first signs pointing the doctor to RA.
Andrew
I have to laugh, too or else I’ll cry.
But, I swear it’s all true.
WP has not been a breeze, but I’ll get there.
Sometime my pats. say: I forgot, you aren’t interested in my ankles & I always reply: I’m interested but later, that is after DAS.
I believe that there’s continuous damage, ever after stopping inflammation, if there is already structural damage. That’s running like an accelerated osteoarthritis — but I don’t have the means to verify this hypothesis.
Have a look at http://rheumatologe.blogspot.com as I show, which activity indices I use.
Dr. Kirsch,
That is so funny. The first part, I mean.
If we (the doctors, researchers, the drug companies, everyone!) do not listen to the patients’ description of their condition, how would we ever find the answers and a cure?
Yes, we need to address inflammation, but you are correct. There is more going on even when inflammation appears to subside.
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Interesting, but why would any RA specialist not include ankles and feet when discussing RA? That is an insane concept. Also, I have had joint pain with an ESR of only 28, with little swelling. My joints feel like they are slightly sprained. The extremely severe pain happens at a higher level, but try walking around for any length of time feeling like your joints are slightly sprained. That can wear on a person as well.
It’s all kind of strange from the patient viewpoint. I know they sometimes laugh about it, assuming all doctors treat all joints anyway, but it’s hard to reconcile that so many important joints are left out specifically or under-valued in the diagnosis criteria as well. Read more on the ACR site here.
Should we count feet in? LOL! My RA started in the mid-foot, and I had erosions and deformity by the time the doc figured out why my feet had been so sore for 18 months. Oh, but my fingers and toes are just fine!
I can surely attest to feet bearing highly important functional roles!
I don’t understand this. Why would ankles and feet be left out? My feet are consistently the worst symptom I have. They were the first symptom I had and were the reason I began seeing doctors that led me to an RA diagnosis. I have days where I can barely walk. In my own mind, I won’t be “better” until my foot pain is gone. Why on earth would my number one symptom not be considered in a DAS?
What is the difference between burned out and remittiuon?
My burned out hands don’t always hit the right keys.
Remission
I’m new to this thread and as it happens having quite the uncomfortable day if you get my drift AND I’m laughing my head off!
We RAers are Hysterical in the face of some really dumb guidelines.
I type this wearing wrist splints on my sofa with my feet which are FLARING.?