Information & encouragement to fight RA
Do you have a link to the original article? I would very much like to read it before I comment on any inaccuracy. I think we want to encourage public awareness of the disease and try to make sure that they do so with accurate information, a fine line to walk since so many rheumatologists, theoretically experts, even spread what I would have to consider misinformation. I think back to my original experience and the rheumatologist who told me “You don’t have rheumatoid arthritis; your bloodwork is negative.” I can’t imagine what my life would be like now if I had accepted that and continued in treatment with him. He has a very good reputation locally and I suppose that if I were seropositive I would have received appropriate treatment but I shudder to think of the seronegative patients in his practice and their future. Here is a respected rheumatologist, who TEACHES at a local hopspital, who believes that seronegative rheumatoid arthritis doesn’t exist. I am now currently treated by a doctor at the Cleveland Clinic who believes that as many as 20% of people with Rheumatoid Disease are seronegative and is totally unfazed by my bloodwork and because of this, I am on Humira and am greatly improved, although I am sure that I will NEVER ride a bike again! My knees are howling with how screamingly funny that idea is and I really want to tell USA today that too – and I’m a success story!
The original article has been updated, so that is all you can comment on at this point. Here is the link http://www.usatoday.com/story/news/nation/2012/12/18/rheumatoid-arthritis-pain-treatment/1752241/
There is now a discussion with 38 comments, but I think letters to the editor are still valuable. They need to know that going forward, this will not be accepted by the public.
looks to me like “some improvement” =remmisionin this fairytale
I tried to view the article but was unable to as the screen was covered over. Any attempt to remove the covering and I was redirected to the next article.
I am also a success story even though my RA is not under control. Most likely it never will be. I have resigned myself to this fact. It will get progressively worse as time transpires. I have set my mind to control my life and to not let the RA control me in as much as I can.
It is frustrating when we read or hear about these kinds of articles. They only help to spread the mis-information that abounds regarding RA. Fortunately I do have a good doctor who is well studied on this disease and who treats me based on me and what I am going through not what books or blood work says. Not everyone is so fortunate though.
When I can get a access to the article I will draft a letter to the editor.
Thanks Kelly for all
Thanks for bringing attention to this poorly written article. Here is a response I wrote and sent to the author and editor.
I really appreciated your blog post, Andrew. Your article is a fine example of what USA Today might consider when writing about rheumatoid disease. I’m so glad Kelly has contacted the Editors of USA Today and will look forward to their reply.
Enbrel was my first biologic, but once we determined that it didn’t work, we went to Remicade (all with a side helping of Metho). Now after six months we are looking at switching to yet another biologic to help slow down the progression of disease. I am thankful that I have such a great rheumatologist who is willing to look at all aspects of RA and listen to me.
While the article is misleading (and boy is it), we need to remember that the drug combo, Enbrel + Metho, worked for the patient and that, at the very least, we should be happy for the slowing down of her RA. I saw very little of that in the comments on the article. That being said, it dismays me to think that my husband or my parents or my children could read that article and have the hope that one day I might go into remission when, frankly, I doubt it will happen as we cannot get the RA under control.
Also, the 75% remission rate mentioned in the article is, I believe, a reference to the Trial of Etanercept and Methotrexate with Radiographic Patient Outcomes (TEMPO). But, as you might have guessed, the percentage claimed in the article does not differentiate between progression and remission at all and grossly misrepresents the findings of that study.
Letter sent to both. Thanks, Kelly.
So, I’m part of the media. My goal is to not goof up with RD as is so common, and with a recent article I wrote, I went through the checklist you have posted of dumb things the media does. Happy to say, I don’t think I did any of them, and my sister-in-law (RD patient) said she doesn’t think so either. Happy day. What I found frustrating was trying to find a rheumatologist who would speak with me. My editor required “a professional’s voice” in my article, and that’s been the biggest challenge. Your blog has been very helpful in offering some guidelines for what an RD article should (or should not) look like. So thank you.
thank you, Lara, for your efforts to get it right, and for being a good sister. I’ve dealt with many reporters and editors in the past few years; some are wonderful, and others have an agenda that conflicts with reality & makes it hard to get it right.
AND, yes you’re right – just as it’s hard for patients to find a good rheumatologist–
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