One patient, two rheumies. Worlds apart

The back story:
Last fall, after a year of DMARD trials, I went to my rheumatologist for a check up. She felt my fingers and toes, declared me getting better, and said that my disease wasn’t severe enough for a biologic. I went back to my car and wept because I sure didn’t feel better: I felt awful. Six months after my consult with her, I went to a specialist PsA research clinic for a second opinion. They said my disease was severe, and that I had considerable damage. (They also agreed to take over my care, thank goodness.) So how do two rheumatologists come to such wildly differing conclusions?

Well, that’s a really good question. In fact, I was so puzzled/angry/upset about that question that I decided to write a very clear and carefully-worded letter to Rheumie #1. I said that, within six months of her declaring me “getting better” and stating that I wasn’t severe enough for a biologic, I had lost my hip (and two litres of blood in surgery because of the extreme inflammation). I also told her that I had been diagnosed as severe by the PsA Clinic. Oh, and I fired her. To her credit, she responded with a very cordial and detailed letter addressing everything that I had said.

The key to her misdiagnosis, as I read it, is that I had fewer than five swollen joints that she could detect. She said that the hip joint is buried deep in the body so she couldn’t have known that it was inflamed, and that I seemed to be doing well on the Arava and Methotrexate. (I guess she didn’t ask me how I was feeling, because I know I felt awful.)

She apologized to me for brushing off a lifestyle concern that I expressed, and she said that it sounded like a biologic was, indeed, appropriate for me. (Yes, after more than a year of painful misery, and a hip replacement … but I’m not bitter, nooooo…)

In retrospect, it’s this. I go to the rheumie, and in my allotted 15 minutes, she glances at my blood work, feels my fingers and toes, and thinks “hmmm, not too many inflamed joints, so mild disease”. I go to the PsA research clinic and spend a good 45 minutes on questionnaires about my daily functioning, my activity levels, my pain levels, my mental state. Then I spend well over an hour with a PsA specialist/rheumatologist who takes a detailed history and feels, measures and records everything, including range of motion for all my moving parts. After that, it was x-rays of every bone in my body except my skull. Then the verdict: severe disease with a lot of damage, and that I really needed a biologic. I guess it boils down to how thorough the rheumatologist is, and how much time they take to listen.

There were a couple of factors which confused the issues in my case:

  1. I don’t have a lot of finger and toe involvement (although the middle of my feet is a mess). The worst of my damage has been knees (both replaced, assumed at the time to be osteo) and hips (one down, one on the cusp). Mine is an unusual presentation of PsA.
  2. I have an insanely high pain threshold, and apparently I don’t feel inflammation until there is damage. That is to say, too late. Any normal person would have been in screaming agony years before I started complaining of aches and pains. This is not a good thing.
    Rheumie #1 didn’t pick up on any of this in her quick-in-quick-out consult but the specialist researchers did, being as painstaking and methodical as they were. The difference, I guess, between a fee-for-service practitioner maximizing her income, and docs who are doing research into the disease. I’m feeling very lucky that I could go to the research clinic, and that they were willing to take over my care. I am now on Enbrel, doing well, and going back to the PsA clinic on Monday for follow-up.

That's definitely a world of difference. I know sometimes I feel like I'm whining when I go to the doctor. But you know what, unless I tell her everything, she won't necessarily know. So even if she looks at my hands, knees, etc, and checks some range of motion, she won't know that my fingers are hurting me badly, that I've been having trouble sleeping due to knee pain, or that my hips have been bad lately. She won't know that I've had some heel pain bad enough, but passing, that I haven't been able to let them hit the floor. The more that we are able to tell our doctors, even if it feels like whining, the better. Thanks for the confirmation on that Seenie.

Absolutely, Stoney. Rheumie number one gave little opportunity for me to tell my story. At the clinic I went on and on. When I paused or apologized, the doc said “never mind, just keep talking”. So I did. And yes, that’s what made the difference.