A Long Day's Journey into Night

Recently, Rheumatoid Arthritis Warrior has completed a series of posts on whether a person should delay treatment for arthritis. In one of her posts, she cites information from the University of Kansas Hospital's site:

Studies have shown that damage to joints occurs in 60% of people with rheumatoid arthritis within 2 years. Because irreversible joint damage, chronic pain, and long-term disability can occur if rheumatoid arthritis is not diagnosed and treated early, it is now recommended that a person with rheumatoid arthritis see a specialist in joint disease (rheumatologist) within the first 3 months after symptoms appear.

Now, I don't think you'll encounter a rheumatologist today who wouldn't suggest early treatment with a diagnosis of RA. "Early and aggressive" are the new catchwords in rheumatology (okay, along with "biologics").

Early and aggressive, early and aggressive, early and aggressive MY ASS! Here's why:

How long did it take you to get diagnosed? While you painfully struggled hither and yon to various doctors in an effort to figure out "what ailed you," didn't it feel like you were waiting for the Apocolyse or the Second Coming or a truly excellent version of Windows to appear?

Let's face it: Early and aggressive treatment rarely happens because delayed diagnosis is the norm rather than the exception.

I'll use myself as an example.

I first started having severe aches (but no inflammation) in my hands and feet shortly after a hysterectomy in January of 2006. (Damned uterus.)

My PCP thought it was just tendinitis and prescribed naprosyn, which didn't help. I subsequently was referred to a RD. He wasn't sure what it was, but gave me Mobic, which didn't work. My blood tests and x-rays came back normal and he was stumped. So he diagnosed me with Fibromyalgia and gave me gabapentin (which also did nothing). During this time, I just continued to have excruciating pain in my hands and feet.

Nine months later, we moved to the Chicago 'burbs (i.e., Stepford). By this time, I was pretty sure that I had RA, even though my bloodwork remained normal. At any rate, I saw a second RD, who also insisted I had Fibromyalgia, not RA. So he put me on Cymbalta. You'll be unsurprised to learn that the Cymbalta gave me less than stellar results. Subsequently, he gave me some trigger point injections because my muscles were tight. Still nothing. Now, during the year that I saw this douchetastic doctor, he also ordered two different sets of ultrasounds, which he claimed revealed only inflammation. Finally, I decided I'd had enough with Mr. Sharpshooter and sought out yet another RD.

As part of that process, I requested my medical records from the aforementioned Dr. Douchiness. When I read them, I was absolutely astounded. Why? well, first of all, he diagnosed me with dysmenorrhea. For those of you who are unfamiliar with the definition of this term, it means menstrual cramps. Holy shit! I have to say, I was really impressed that he apparently was able to provide me with a new uterus without my even being aware of it. I mean, clearly, this deserves some sort of write-up in a journal, no? It's nearly a freaking miracle! (And as an aside, Eric and I are really glad that I didn't get pregnant during this time, since we weren't using protection. We already have six cats, and I'm not sure we can afford another mouth to feed....)

Second, the ultrasound reports revealed not just inflammation, but also pannus and bone erosions. Pannus only occurs in conjunction with RA. I clearly had RA, not Fibromyalgia. So why the fuck wasn't I receiving treatment for RA?

By this time, I'd had my symptoms for over two years. My third RD looked at my negative bloodwork, my negative x-rays, my positive ultrasound and considered my pain, and quickly announced, "Well, you have Rheumatoid Arthritis."

It subsequently took us about a year to find a treatment that works. And during that time, I've developed bone thinning and erosions that now can be seen on regular old x-rays.

So there we go: It took two years and three doctors to diagnose me. Granted, my case wasn't easy. But my case is representative of about 30% of the RAers. How much does that suck?

And yes, I'm bitter about it. Because I've also developed extra-articular (i.e., non-joint-related) complications from my disease in the time that it remained uncontrolled, the most painful being neuropathy.

So, health information sites can say all they want about the importance of early diagnosis and early and aggressive treatment, but until rheumatologists listen to themselves (and their patients), there's damned little that's going to be done about it.

As an aside.... I'd love to see a new study done that examines the relationships between length and type of symptoms, test results, length of time required for RA diagnosis, type and number of treatments utilized, and length of time required before successful treatment is achieved. It would have to include numerous other variables, of course. But I'll bet the results would be shocking and just might serve as a wake-up call to the rheumatology world.

Okay, I'm done pitching a fit. At least for now.

Comments

[Kelly]

Hey, Kim.
I have some similar tales to tell. And I have read so many more which have been told to me. You are correct about studying it.

This is why I challenge the guidelines for starters. How do we wake up the profession? How do we break a glass ceiling with our canes? My college-aged daughter said it best: Only people with RA understand what early RA looks like. That is why I keep wishing we could get some dr.s who do have RA. What about this: maybe the ACR could put a token real patient on some panels or boards? I am game.

[Melissa]

I've been reading your blog for awhile and this is the first time commenting. I definitely think your story of diagnosis is the norm. It took me approximately 3 years to be diagnosed and all my tests still come back negative, it is extremely aggravating.

Thank you for writing your blog. In some little way it helps me. Thank you and I am sorry you have this disease. It TOTALLY sucks.

[David & Maria Orchard]

We sure wish my wife's RA Consultant had RA....

slow to diagnose - a writer of countless books - treated like a God and as caring about his patients as a block of stone

long waits to see him
appointments cancelled - during the summer holidays - when the weather was too good for the good man to come to work when the beach or golf course called...

thank you for your blog

[Jody]

Sorry to say I have much the same journey. I actually was sent to a Orthopedick! He told me nothing is wrong with you except you need to go to a gym and get in SHAPE. (I weight 125-I'm 55) really? Idiot...woke up w/what I explain felt like a heart-attack in my knee. Finally someone listened. Blood work showed RA titer of 450! Yeah, I should just go get in shape.

[Michelle Evans]

Hello Kim.
It was two years for me. My (NHS)doctors have great - it felt like the system was holding back my diagnosis. They couldn't take in to consideration any symptoms practically below the knee! I also didn't have symetric symtoms. As a result,at 36 I have now had a total replacement of the left knee with ongoing tests as to what can be done with a rotted right ankle, right elbow and left shoulder. If I'd had a early diagnosis I know I wouldn't be in this state now.

I want to thank you for this site. I have only just discovered this huge online community. With people like you fighting for us I feel hope. Wish I'd found you earlier.