Affective Error

Last year, MedPage Today‘s John Gever wrote a piece for ABC News titled 25 Years in Arthritis: New Treatments, New Hope.  After glowing reports on the promise offered by multiple DMARDs and BRMs, how much better the prognosis is than it used to be, new treatments, new hope, ray of sunshine, rah-rah-rah, buried at the bottom of page three we find:

Life is still not a bowl of cherries for RA patients. Eventual disease progression remains the rule for patients, even though, compared with earlier generations, they will be much older when joint surgery becomes their best option.

WHAT!?  I was shocked when I read this.  Disease progression remains the rule?  But… but…

Aggressive management can improve function, stop damage to joints as monitored on X-rays, and prevent work disability. (MedicineNet)

Disease-modifying antirheumatic drugs…  can slow the progression of rheumatoid arthritis and save the joints and other tissues from permanent damage. (Mayo Clinic)

Strategies are all aimed at reducing pain and discomfort, preventing deformities and loss of joint function, and maintaining a productive and active life. (Johns Hopkins)

The goals of treatment with rheumatoid arthritis medications are to achieve remission and prevent further damage of the joints and loss of function, without causing permanent or unacceptable side effects. (UpToDate)

Early diagnosis and treatment of RA is critical if you want to continue living a productive lifestyle. Studies have shown that early aggressive treatment of RA can limit joint damage, which in turn limits loss of movement, decreased ability to work, higher medical costs and potential surgery. (Arthritis Foundation)

It’s so easy to hear the promise of how much better things are now than they used to be – to focus on the hope and promise of better treatments.  After reading that depressing little statement buried in the 25 Years article, I went back and re-read the RA articles previously referenced:

The optimal treatment of RA requires a comprehensive program that combines medical, social, and emotional support for the patient. It is essential that the patient and the patient’s family be educated about the nature and course of the disease.  Strategies are all aimed at reducing pain and discomfort…  (Johns Hopkins)

Medications can reduce inflammation in your joints in order to relieve pain and prevent or slow joint damage…   You may need stronger drugs or a combination of drugs as your disease progresses. (Mayo Clinic)

…the goal of treatment in rheumatoid arthritis is to reduce joint inflammation and pain, maximize joint function, and prevent joint destruction and deformity. Early medical intervention has been shown to be important in improving outcomes. Aggressive management can improve function… (MedicineNet)

I’ve been wondering how I could have so easily missed the warnings all these articles hold.  Last night, I might have found the answer.  I’ve been re-reading Dr. Jerome Groopman‘s How Doctors Think:

We all tend to prefer what we hope will  happen to the less appealing alternatives; this natural tendency is termed “affective error.”  We also lull ourselves into thinking that what we wish for will occur when we get the first inkling, however fragmentary, that our wish may come true.  In short, we value too highly information that fulfills our desires.

It reminds me of the discussion I had with my rheumatologist when she recommended adding a TNF-blocker.  I’d heard such wonderful things about biologics, but I questioned her, “So this will stop the joint swelling?  I’ll get my life back?”  Maybe.  That’s the goal.  No promises.

I highly recommend Dr. Groopman’s book, How Doctors Think
Another book, Anatomy of Hope (written with cancer patients in mind) is also pretty good


I Shot Myself in the Stomach*

Last week in the rheumy’s office I used an auto-injector pen.  Just jammed it against my stomach, pressed the button, and waited.  After what I’d heard – people comparing the sting of Enbrel vs. Humira – I was pleasantly surprised.  It really wasn’t that bad.

In my wildest dreams, I never thought I’d be giving myself shots.  That’s not on my bucket list.  Not even close.  Then again, a lot of the events of these past few years took me by surprise.

Monday morning I get to try it on my own at home.  With a syringe instead of the pen.  Without any assistance or supervision.  If I say that I am not nervous, would you believe me?

This disease provides all sorts of opportunities for new learning experiences.

*technically, “abdomen” but that doesn’t have the same ring to it

Switching Docs

A recent reader comment/question:

In our area, upstate New York, if you have been seen and treated by a Rheumy, and if for some reason, you decide to seek care from another Rheumy, other Rheumies in our area refuse to accept you as a patient and refer you back to the Rheumy to whom you no longer want to seek care from.  We have been rejected by four different Rheumies in our area (without being seen by any of them), only to be told by the office staff that doctor doesn’t take any cases if already established with another Rheumy.

Anyone ever hear of such a protocol????

Yes, I have heard of this.  There’s probably a way around it, though.

There are patients who see a doctor and complain to him/her about the previous doctor.  Before too long they’re not happy with the care they’re receiving from the new guy and move on to someone else, and someone else…  I suspect that after a while doctors get jaded by that.  A doctor who’s already overworked isn’t going to be really happy about investing time and effort into developing a treatment plan for someone, only to have that person leave and go somewhere else complaining about him.

If it’s not working with your current doctor, something needs to change.  There’s got to be a trick to changing specialists without being one of those guys Dr. Grumpy writes about.  Other doctors blog about this, too, but I can’t think of specific posts right now.

Have you read Doctor D’s post on doctor shopping?  Or his post on doctors who are jerks?  He’s writing about finding primary care, but I think there are still some generalities that can apply to finding and working with a rheumatologist.

If your family practice/internist can’t get you in to a new rheumy, maybe you could go back to your old rheumy (the one you want to get rid of), and be up-front about the fact that it just isn’t working, and you’d like his help getting you in to see a different rheumatologist.  Are you self-referring?  Around here none of the rheumatologists take self-referrals.  Did your primary care doctor write a referral only to have consultants decline?  When I told my PCP that I was thinking of finding a different rheumatologist, he had his referral form out immediately.

Make sure you identify the problem with your old rheumy.  Office in an inconvenient location?  Nurse has B.O.?  Doctor doesn’t listen?  Falsely labeled you a drug-seeker and you’d like a chance to start over with someone new?  Standard of care is X but the doctor is doing Y?  Just bad chemistry?  Doubt the diagnosis?  If you ask either your pcp or your rheumy for help finding a different doctor, be prepared to say why.  Good luck.

Anyone else want to add other suggestions/observations?