Possible Rheumatoid Arthritis

Our family’s testing for possible rheumatoid arthritis

This article is part 2 to RA Runs in Families.

My daughters and my friend’s family members were being tested for possible rheumatoid arthritis. The imaware™ at-home RA test checks for three antibodies that occur with RA / RD and asks other questions related to RA diagnosis. When the RA test reports are ready, the imaware™ website sends a link to a secure message with the report. There is an easy to understand message for the patient, and a more detailed report of test results to print for your doctor.

My older daughter MK’s email came first. She read her imaware™ RA test report and texted me how relieved she felt about her results. Then she sent me several screenshots. I noticed that all three of her antibody levels were below the cutoff for likely RA, but two of them were still much higher than zero. Since I know anti-CCP (aka ACPA) is quite specific to rheumatoid disease, I still felt concerned—especially since I know she’s had RA / RD symptoms sometimes.

Likelihood of possible rheumatoid arthritis

The imaware™ report groups people into one of four categories of likelihood of possible rheumatoid arthritis. MK was the in the group less likely to be diagnosed with RA /RD. Some of my friends’ family members were in a somewhat likely group. For both my friend Shannon and me, seeing results below the cutoff was not a real relief because we realized that possible rheumatoid arthritis could still be in the futures of our loved ones.

possible rheumatoid arthritis

Like our RD, our concern was one more thing we shared. Since we both work on the board of the Rheumatoid Patient Foundation (RPF), Shannon and I share a dedication to increase early diagnosis of RA / RD because treatments are more effective in early disease. This is the best way to improve the lives of people living with RD—which could someday include our loved ones.

We know that we are blazing the path for many others who will be tested and face early detection of possible rheumatoid arthritis in themselves or loved ones—in a world where doctors are still taught diagnostic criteria that tend to identify later disease. We must increase awareness of early disease by helping the world think beyond arthritis—the joint swelling, disability, and deformity that inevitably comes without early successful treatment. For these reasons, we will continue to share our stories and what we learn.

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Stopping possible rheumatoid arthritis

If you joined our Facebook chat for Rheumatoid Awareness Day in February, you heard from Dr. Kevin Deane of the Stop RA trials, who works with imaware™ the new at-home test. Were you surprised about trials learning about how to prevent rheumatoid disease? Maybe not if you’ve been following this site a long time or have read my book, RA Unmasked. As these investigators have been looking for ways to identify possible rheumatoid arthritis in earlier stages, it’s only logical that they look for ways to stop it from becoming full blown in the first place.

How has possible rheumatoid arthritis / disease touched you?

Right now, you and I—and Shannon’s family—are part of a movement worldwide to understand how early is “early” in possible rheumatoid arthritis and grasp the true nature of the disease as more than a type of arthritis. For many families like ours, this is also a very personal journey. Even as RPF work has continued to bring Shannon and me together, I have seen that not only does RA run in families—so does a warrior heart.

Click here for part 1 of RA Runs in Families.

Recommended reading

Kelly Young

Kelly Young is an advocate providing ways for patients to be better informed and have a greater voice in their healthcare. She is the president of the Rheumatoid Patient Foundation. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. Through her writing, speaking, and use of social media, she is building a more accurate awareness of Rheumatoid disease aka Rheumatoid Arthritis (RA) geared toward the public and medical community; creating ways to empower patients to advocate for improved diagnosis and treatment; and bringing recognition and visibility to the Rheumatoid patient journey. In 2009, Kelly created Rheumatoid Arthritis Warrior, a comprehensive website about RA of about 950 pages and writes periodically for other newsletters and websites. Kelly served on the Mayo Clinic Center for Social Media Advisory Board. There are over 42,000 connections of her highly interactive Facebook Fan page. She created the hashtag: #rheum. Kelly is the mother of five, a home-schooler, Bible teacher, NASA enthusiast, and NFL fan. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She has lived over nine years with unrelenting Rheumatoid disease. See also http://www.rawarrior.com/kelly-young-press/

3 thoughts on “Possible Rheumatoid Arthritis

  • March 6, 2019 at 10:01 pm
    Permalink

    I fear the self test will lead to people who want to be diagnosed, doing self diagnoses. We see this in the diabetes community. Where young adults in particular, young women, try hard for and ask for the DX, despite being told by multiple doctors they do not have it. This has increased incredibility since the wide spread availability of home glucose testing at a fairly low cost. True there are not many, but thsoe who follow this path are deeply troubled and they have no restraint to getting a diagnosis . In the case of glucose testing it looks like people who are seeking community based on the idea that they have diabetes.

    i hope this does not happen. Used responsibility home testing might be a great thing. I hope it is.

    Reply
    • March 7, 2019 at 10:52 am
      Permalink

      Thanks, Rick. I had never heard of this phenomenon with diabetes. I’ll keep an eye out.
      First thoughts:
      Since “sero-negative” RD exists for now (until we learn how to test for more antibodies), I believe that symptoms will still be needed for RD dx. Even imaware™ — who does not diagnose — does take symptoms into account with the reports. With RD, getting diagnosed with symptoms that look subtle or intermittent early on has always been the huge problem. I’ve written about this extensively because of many letters from patients and my own incredible experiences such as a young female rheum doc taking me off DMARDs because she thought my hands looked ok and she thought I must be able to “put on a bra.”

      Reply
  • March 11, 2019 at 2:08 am
    Permalink

    I have had RA since I was 28, just over half my life. In1989 it took several negative tests before I got a positive test. Unfortunately, my RA was severe and aggressive. The Dr told me to go home and buy myself a wheelchair because I would be in it by the time I was 30 years old( I immediately told him what he could do with that wheelchair).At the time, there were no biologic drugs yet, and I had 3 young children and had to continue to work as a hairdresser and waitress until my knees , wrists, and other joints were so crippled to the point that I could not work and was forced to apply for disability. I worked until I was 42- 14 years in excruciating pain. I have had over 30 surgeries on several joints and tendons since 2005. I believe early detection is key to prevent anyone else going through the pain, deformities, and suffering I have lived with for 30 years. BTW, after my knees were replaced in 2005, I enrolled in college just to keep busy. I had the remaining 30 + surgeries in between semesters and in the summers. Today, I am an internship away from getting my Bachelor’s Degree. I may never be able to work again, especially full-time, but I did it to show my children and grandkids that no matter what life throws at you, you can still overcome any situation.
    Sincerely, Mary Phelan

    Reply

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