http://www.rheumatology.org/press/2007/0207RArisk.asp
Hey Lynk, I had read a similar version of that article the other day and was rather frustrated with it. It excludes many of the symptoms that a lot of us experience BEFORE we get our diagnosis. It seems to support the standard protocol that doctors are already using which I feel is letting quite a number of people down the do have Undifferentiated RA.
What do you think?
I take some comfort in that they are, at least, beginning to look at the subject. Nothing is more aggravating than doctors in denial.
I do understand their hesitation in regards to DMARDs. 40% to 50% of people with UA remiss by themselves in a few months and don't go on to develop RA. It's that 1/3 that needs to be identified earlier and the nine "identifiers" listed are typical nerdy-science-guy-doctor
My rheumy, who is the epitome of nerdy-science-guy-doctor
Oh Lynk it is too true. Those docs are just people too. You have to find a way to communicate with them. Your fatigue chart was pure brilliance.
Thanks for the link!I think you are on to something here - can you share some info on your fatigue chart with us? Was it on a scale of 1 to 10 or ??? Would love to knw, when I told my (former) rheumy that I was always tired, his answer was, "well, a lot of people are tired these days" He just didn't get it. Pat
There's a form online somewhere, used by cancer patients, called the Piper Fatigue Scale. There's another called MAF (Multidemensional Assessment of Fatigue) that's been used with RA patients, http://www.son.washington.edu/research/maf/default.asp
Mine was purely homemade.
I coughed up the to read the full article in the journal. Expensive, but useful for me since I'm in this phase and getting frustrated. I thought the prediction rule was pretty useful. Though it didn't include fatigue, I thought it covered key factors. It considers sex, age, localization of symptoms, morning stiffness, tender joint count, swollen joint count, C reactive protein, RA factor, anti-cyclic citrullinated peptide antibodies (huh/). It is pretty much the standard stuff, but it crunches it up and spits out a number, which I like. And my number gave me a very good arguing point with my rheumy for next week.
Deanna, what other factors do you think it ought to consider?
RKGal, put me on the spot. Let me think. Function would be a big one just like fatigue is. Pain is another one. Flu-like sickness.
How often do you flare. That's a big one with me. I can have a day or two with relative low symptoms. Then, I will feel tired. I fall asleep and every joint is hot, the pain is awful, I can't wake up, I feel very sick to my stomach. How do you measure that? And, afterwards, the joints stay hot, and quite weak.
Also, during a flare, what other symptoms do you have. There should be a correlation between the meds you are taking at the time you are marking your progression. Add teariness, irritability and depression. Swelling is huge for some people and doesn't mean much to others.
Which joints hurt on which days. Mine rotate just to aggravate me.
How well did you sleep? For how long? Was it interrupted by pain? Did you have to take something for pain? Did it help the pain?
Appetite is also an indicator. Sure pred increases it. But when you are on a constant dose or off it, a lack of appetite can indicate you are not doing good.
Maybe we need our own packet to take to the doctors. I really don't think they are getting a true picture of what it is like and how much it varies from person to person.