Early RA Diagnosis: Renovate the #rheum | Rheumatoid Arthritis Warrior

Early RA Diagnosis: Renovate the #rheum

Victory: early RA diagnosis for a friend

This past week I was actually excited about my friend Paige’s early RA diagnosis. Let me say that a better way—I was excited that her rheumatoid disease was recognized so she could start being treated. After listening carefully to Paige and looking at pictures of her swollen fingers, I knew she had RA / RD that had been simmering for a while. It was just starting to become what I’ve always called “full-blown.”

When I saw my rheumatologist this morning, I thanked her for helping my friend get on a good path with an early RA diagnosis. We agreed that “early” meant she didn’t have the disabilities and deformities that I have now, and hopefully she never would because she’s being treated as soon as symptoms are obvious. But we also agreed that her joint problems over the years were likely related to simmering RA / RD.

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Tools to manage an early RA diagnosis

Early RA diagnosis

That’s when she mentioned one of the most important keys to managing an early RA diagnosis: “Back then, we didn’t know. And we didn’t have the tools.” It reminded me of my recent email letter: I compared remodeling a house to renovating rheumatology.

If you didn’t get that letter, click here to be sure you are signed up.

We live with some old practices and old ideas and at the same time have gleaming new tools that promise a normal life where we can run and play tennis. Some few people use the tools early and reach that goal of “normal,” but most of us have to accept something less and call it “new normal” and live on. And unfortunately, both eventually do experience disease progression, some more than others.

Tools to achieve an early RA diagnosis

No one can see the future clearly to predict exactly how rheumatoid disease will one day be cured. Yet, it’s very possible that the disease will someday be prevented from ever causing pain or illness because it will be detected and treated like pre-diabetes or pre-cancerous cells. For those of us who already suffer from the disease, labs also study how to re-train the immune system to stop attacking joints and organs.

However today, we have tools that can make an enormous difference if old ideas are left behind. New tools include newer medicines and modern strategies for using them.

OLD IDEAS (MYTHS needing renovation)

  1. RA is a type of arthritis
  2. It starts in the hands
  3. Extra-articular disease is rare
  4. Symptoms are always visible (swelling required for diagnosis)

NEWER TOOLS

  1. Medicines like biologics and JAK inhibitors
  2. Recognizing the disease starts before fingers swell
  3. Strategies like treat to target
  4. Early screening for antibodies in family members

It’s true we need more. We need different types of medicines and more tests for detecting a variety of antibodies earlier. But using what we have and know now to its utmost with early RA diagnosis will prevent a lot of suffering.

May is Arthritis Awareness Month. It’s a good time to help others be aware of the true nature of rheumatoid disease. Like the popular RPF billboards say: Arthritis is just one symptom.

COMMENT BELOW: DOES EARLY RA DIAGNOSIS MAKE A BIG DIFFERENCE? HOW EARLY ARE PEOPLE BEING TREATED NOW?

(Images from my phone this morning before my shot.)

imaware at-home RA test

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Kelly O'Neill Young

Kelly O'Neill (formerly Kelly Young) has worked over 10 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly by on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over thirteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

4 thoughts on “Early RA Diagnosis: Renovate the #rheum

  • May 7, 2019 at 9:52 am
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    After years of going through flairs and then it settled down I think this past month I’ve hit a new normal and not a good one. My hands have become so painful and the middle finger on both hands hurts so bad, are stiff and the joints lock at times and yes they are swollen. Simple task are not really simple but you find a way to adjust the best you can and keep fighting. RA/RD is something no one ask for and it takes you places you never wanted to go so I am so excited that it is being looked at from a different perspective and treatment options and testing early may help others avoid or at least delay some of the disability and suffering from this disease.

    Reply
  • May 7, 2019 at 11:14 am
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    Hi I’ve just been diagnosed with RA my ankle is suffering the worst atm but it started in my hands and shoulders was put down to reparative strain but just got worse
    I’m struggling with what’s best what’s not going on meds which I have to have blood tests every 2 week feeling really low with trying to come to terms with this at 49

    Reply
  • May 7, 2019 at 9:47 pm
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    I am forever thankful that i was diagnosed as early as I was. i was in a mess by the time I got the diagnosis, but it was still far earlier than people would have done even 10 years earlier. I was in a good place for the diagnosis when it came no time is a good time for a diagnosis of anything). A few years earlier, I might have maintained better health, but I also might have missed out on many things that we would have been too worried to try. In the end my diagnosis happened at about the right time.

    Reply
  • May 16, 2019 at 5:35 am
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    My diagnosis 10 years ago was very, very early. To the point my Rheumatologist (good man for believing me) was shocked I picked it up as he almost never sees it so early. And yet it still took me SIX years from when I noticed something was not quite right to get that diagnosis. Every test was too generic to find anything – only a tiny elevation my ESR and what seemed like a sensitivity to heat. Docotrs blamed everything from menstruation to my study. Instead I had to wait until I had a clear flare up (some RF showing) with fatigue and stiffness. Bah..

    By my count I have never truly had obvious joint swelling (mostly generalised puffiness) or heat, and only one truly debilitating moment with my knee due to trying to taper the methetrexate. Yes, the RA was still there and definitely not fully remitted. I get bad fatigue, stiffness and bad with heat. After a decade of RA and treatment I am able to work full time (exhausting, but possible), am fully mobile and any decline is so slow motion as to be clinically neglible. I doubt this would be possible had I waited a year or more, because the disease is clearly only being suppressed. My pain is tolerable without help, if I am very careful about energy expenditure.

    Downsides are no one believes me, and I often feel like an imposter around others who are worse off. And there is so very little information on what RA looks like before actual joint damage (what does it look like solely as inflammation), how to protect my joints for further decline, how to exercise etc.

    Reply

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