3 Reasons Why the Public Image of RA Is So Rosy
As a commenter pointed out on yesterday’s blog, some studies claim that 50% of RA patients go into remission if they are treated correctly. But we don’t see 50% remission when dealing with thousands of patients over the last couple of years. Lots of things we see don’t harmonize with facts we’re told about RA. If you’re new to RA Warrior, you might not know that is one reason I wanted to build this website – to get to the bottom of these many discrepancies and present the truth about RA.
I can’t count the number of times today I said under my breath, “Oh my God” due to pain, bracing myself to go on. It wouldn’t feel encouraging if someone said, “I’m sorry it’s a bad day for you” because it’s not just a day; it doesn’t get better. It would help if others understood that there are no good days, physically speaking.
I’m not depressed. I’m not giving up. But it mostly either stays the same or gets worse. Even if it makes some people uncomfortable for me to say so, that’s the truth. It’s one of the ways RA can be.
- RA can be in remission like Debbie’s. Rarely.
- RA can flare and remit with good days and bad, with damage progressing. Like in many patients.
- RA can be consistently unrelenting with no flare pattern. The statistics are conflicting, but it is likely at least 15 to 20% are like this.
Why don’t we hear very much about people in the third group? Or the at-least 34% of people who don’t respond to treatments? Why do commercials show RA that looks pretty mild, but say “moderate to severe RA”? Why do we only read success stories? Why is every famous person who comes out of the closet with RA in remission?
3 Possible Reasons
- A success story sells books. Hollywood insider Christine Schwab lived with RA from 1990 to 1997. Until Enbrel. Her new book “Take Me Home from the Oscars” chronicles that journey.
- To sell ads. Many websites and magazines will sell page views at any cost. They want to sell the Enbrel ad that sits next to Debbie’s story or the Orencia ad next to the cute RA “primer” (Woman’s Day). They believe happy thoughts like conquering RA with diet and exercise will sell more. The New York Times recently looked at how WebMD creates hype to sell ads and increase page views, compared to Mayo Clinic.
- To make treatments look effective. Pharma companies present their product in the best light possible. The National Databank for Rheumatic Diseases recently described why they found a 6% remission rate while trials of drug companies claim 50% remission is possible.
Please don’t be afraid to speak up about whatever kind of RA you experience. We all need to hear the truth.
Recommended reading
- The Four Courses of Rheumatoid Arthritis, part 2
- The Four Courses of Rheumatoid Arthritis, part 1
- Courses of Rheumatoid Arthritis
Kelly, Thank you. Mine has been constant. Even with the different med’s we have tried they never get it all to go away.It’s never good! It’s never Go Out and Play Golf Day! Always 10 to 35 joints in pain and the fatigue is debilitating. It never leaves,and you never make plans, you never go on trips,you never promise your 11 year old son you will do something with him or for him, you never, you never,you never…But for some reason you keep trying to….
Not so Rosy
Your RA Warrior blog has helped me so very much. My story, like most, is not like the commercials or the books. Luckily, I have a good rheumy even though he is a person of few words. I didn’t get much relief with Remicade and mtx. The oral methotrexate didn’t work and the injectable made me crash. Changed to Orencia and ultimately changed mtx to Arava. Much better for me. The rheumy’s PA is very much up on the latest. I feel I get more info from her than from him – not to negate his contribution. He’s just not a talker. I now know that there is no cure only management and awareness of how much I should and shouldn’t do in managing pain.
I’ve never had the low grade fevers. My issue is the exact opposite – trying to keep warm. I feel I’m getting the best care possible. The doctor never made any promises about a cure only that he’d help me manage it.
What I hate the most are the adverts for over the counter drugs like Advil that show arthritis sufferers dancing and running after their grand kids after taking the product. It minimizes the seriousness of RAD (rheumatoid autoimmune disease, my preferred term) . If it were only so simple to treat, manage and cure!
IS there a support group for RA in Houston? I have just recently been diagnosed. I am on Meth but no bios yet. Severe pain daily. Mine is rare. My Rhum did not even believed I had it until my anti-CCP came back very high. I can hardly walk or wear shoes and I sufer chronic pain.