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):
Kelly, First off, thank you! thank you! thank you! for all the years of work you have put into rawarrior and your book, unmasked. Both have been of tremendous benefit as I navigate the waters of newly diagnosed sero-positive RA (anti-CCP too numerous to count)…
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:
The clean diet was working; by working I mean that in my 20’s I had stopped jogging because of knee pain and at 50 I could suddenly run a painless 5k. Then came the month of my 52nd birthday… In three weeks time I was reduced to needing a cane to painfully extract the first tentative steps out of my body each morning, bilateral excruciating pain in every major joint all day every day, and suddenly couldn’t turn a door knob because it hurt too much. The mystery of extreme fatigue and the vague “something doesn’t feel right” had been answered. Welcome to the warrior community, right? ~sigh~
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.
So why am I writing you? A theme you have probably faced quite a lot over the years: every newbie comes face to face with “your immune system isn’t working so we are going to give you poison (methotrexate) to stop your immune system from working.” It sounds so insane. So insane that, even after reading your book and having had the diagnosis since late August 2019, I still haven’t pulled the trigger on giving methotrexate a go. The two people I know in the area that are familiar with the disease and treatment have both said of methotrexate, “I hope it doesn’t give you too many side effects.” So much for encouragement.
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.
2) A 2014 review of Treat to Target studies confirmed the ”window of opportunity” in treating newly diagnosed RA / RD. Early aggressive treatment improves all types of outcomes of the disease.
This shows early and aggressive treatment is still the best bet to fight the disability and early mortality that the disease can bring.
You might also like to read:
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?
FOOTNOTES 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
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