Letters from newly diagnosed RA patients
As newly diagnosed RA patients find my website and write me letters, two things happen: 1) My heart is heavy for another life affected by this horrible disease. And, 2) I gather more information to add to the tens of thousands of experiences already shared with me.
Of course letters from rheumatoid disease veterans are also invaluable to learning about disease patterns and responses to treatments. Look for more on those topics coming soon in coverage of the recent ACR meeting.
Because the themes are SO common, I’m sharing this recent letter from a man newly diagnosed with RA / RD and my response to him (I changed his name):
Dear Michael, first off, thank you for writing! The many letters written by warriors like you have also been a tremendous benefit to me—helping me learn significantly more about the disease.
Newly diagnosed RA bewilderment
The letter on newly diagnosed RA continues:
I could write a blog post (and maybe a book!) in response to just this part of the letter! The most important things to tell you, Michael:
1) You can do everything right, and still become a victim of rheumatoid disease. A word I seldom use—victim—but I intend to emphasize the unfair, one-sided nature of this disease. It’s never the fault of the person who is stricken, who is often doing all the right things.
2) Onset patterns vary. Many medical professionals tend to doubt this particular pattern, but it’s very real. Every joint that you knew about—and some that you didn’t—refuses to work properly and responds with intense pain.
Treatment decisions and newly diagnosed RA
Here’s more of Michael’s letter. Read all the way to the end! These are things that thousands of people have written to me about.
Without too much technical talk here, someone has given Michael bad information! With RD, the immune system is malfunctioning—that’s correct. But methotrexate (or other DMARDs) doesn’t stop it from working. It partially suppresses its activity. I’m sure Michael’s friends meant well, but they left him with the wrong impression that the medicines are more dangerous than the disease.
Truth about treating newly diagnosed RA
I started writing this blog post responding to Michael’s letter just after returning from the ACR meeting (yet another surgery delayed me). After a decade of attending these meetings, we still see new evidence on the value of early treatment in newly diagnosed RA—and the sad consequences of treatment delays.
1) One poster by a group from Hong Kong found that long term functional loss in RA can actually be prevented if remission is achieved early and sustained. This study is great news because the disease usually does slowly progress, even in those who do respond to treatments.
This shows early and aggressive treatment is still the best bet to fight the disability and early mortality that the disease can bring.Are the medicines scarier than the disease to you? #rheum Answers to Newly Diagnosed RA/RD Click To Tweet
You might also like to read:
- The ostrich article: Can I Delay Treatment for Rheumatoid Arthritis? part 1
- Wait to treat RA? Can I Delay Treatment for Rheumatoid Arthritis? part 2
Newly diagnosed RA — BOTTOM LINE
Michael asks, “Honestly, is it worth trying or not?”
Honestly? I would be much more afraid of what the disease can do to me than the treatments for it. I say that because I’ve read thousands of medical studies about RD and its treatment. I say that after communicating with tens of thousands of people with RD. But I also say it because my disease wasn’t treated properly early on and I have suffered a lot of damage and disability as a result.
WHAT DO YOU THINK? HAVE YOU SEEN THE DIFFERENCE IN EARLY OR LATE TREATING RD? ARE THE MEDICINES SCARIER THAN THE DISEASE?
- Surgery, Stories, and Feet amid Stubborn Rheumatoid Disease
- Accomplishing Thankfulness via Thorough Commitment
- The Pursuit of Happyness When Part of Your Life Is Called Rheumatoid Arthritis
 Chow E, Cheng I, Tam L, Hong Kong C. Impact of Achieving Early-sustained Remission on Preventing Long-term Functional Loss in Patients with Early Rheumatoid Arthritis [abstract]. Arthritis Rheumatol. 2019; 71 (suppl 10). https://acrabstracts.org/abstract/impact-of-achieving-early-sustained-remission-on-preventing-long-term-functional-loss-in-patients-with-early-rheumatoid-arthritis/
 Monti S, Montecucco C, Bugatti S, et al. Rheumatoid arthritis treatment: the earlier the better to prevent joint damage. RMD Open 2015;1:e000057. Accessed from: https://rmdopen.bmj.com/content/1/Suppl_1/e000057.full doi:10.1136/rmdopen-2015-000057