What Kind of Relationship Do You Have With Your Rheumatologist?

The relationship you have with your doctor is one of the more important ones in your life when you live with a chronic, incurable, potentially disability disease such as rheumatoid arthritis.

I’ve been so very fortunate with specialists. When my primary care physician (PCP) recommended that I see a neurologist, I took an appointment with the first available doctor. I lucked out and became a patient at one of the larger MS clinics in Northern Virginia.

When a hand surgeon suggested that I needed a rheumatologist, he made a specific recommendation for a doctor whose office was less than five miles from my house. This rheumatologist is the one who initially diagnosed me and worked with me to find a treatment regimen that works well.

Our appointments were very predictable. The nurse took my vitals, pulled up my records on the computer, gave me a RAPID 3 (Routine Assessment of Patient Index Data) form to complete. I would fill out the RAPID 3 form which helps to establish the patient’s assessment of disease severity. My rheumatologist is the person who would conduct all interviews and examinations.

While we spoke, my doctor would methodically check my joints. Not only did she examine the 28 joints included in the DAS28 (Disease Activity Score) —10 joints in each hand/fingers and both wrists, elbows, shoulders, and knees—she also checked my feet/toes, ankles, hips, and head/jaw. She palpated my abdomen and listened to my heart, lungs, and gut.

When the exam moved along smoothly without too many swollen or tender joints, she found time to talk about exercise, diet, weight, and emotional health. I never felt rushed and I always felt well cared for. I had little doubt that something would go unnoticed. I also always left with a hard copy of her quick exam notes and laboratory orders for blood work to be completed every three months.

There was one time that my doctor touched a spot on my left ankle that elicited a quick “ouch, where did you just touch?” in the middle of our conversation. I had been stiff, but I wasn’t aware that I actually had a seriously swollen and tender spot. Although the ankle is not included in the 28 official joints to be checked, she always included it in her exam.

Fast forward to my new rheumatologist who admittedly I chose because I wanted someone who would be willing to continue my chosen treatment without much fuss. Now I realize that’s exactly what I have—a doctor who will willingly write the prescriptions I need for RA meds.

So is there a problem? I’ve seen my new rheumatologist for three visits. The nurse (not always the same nurse in this larger office) takes my vitals and hands me the RAPID 3 form. The nurse will also ask me questions about how I’m doing. Any complaints or problems? Anything to let the doctor know?

It seems like the rheumatologist reads the notes rather than asking me questions that might reveal prompt more information about how I’m really doing. When she conducts her exam, she hardly touches all of the relevant joints. She certainly doesn’t bend my wrists back and forth and side to side, or squeeze my knuckles firmly enough to detect swelling or tenderness that I might not have been paying close attention to. She definitely hasn’t played with my toes or squeezed my ankles, or put my hips through their full range of motion.

As you may be able to detect from my tone of voice, I’m not so sure that I’m getting the care that I deserve. Admittedly I’ve been doing well for quite some time and any flares that I’ve had in recent years were mild, except for the case of episcleritis that took 9 weeks to resolve rather than 7-10 days.

I’m definitely not getting the kind of care that I would want every other person with RA to receive. But maybe my new doctor would conduct our visit differently if I had greater needs. I am just concerned that something might go unnoticed if I fail to make my own assessment before seeing her.

So my questions to the community are these:

  • What type of relationship do you have/want with your rheumatologist?
  • Does your doctor conduct a full examination regardless of what might be going on?
  • How would you want your relationship with your doctor or the visit to be any different?
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The RheumatoidArthritis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (6)
  • Ann B Wall
    8 months ago

    I have been with a wonderful rheumatologist for 7 yrs, but i am facing a critical issue with my care now. I have been diagnosed with Pulmonary Hypertension since 2015- it is RA related. My rheumatologist has never seen it and doesn’t ‘t believe it is from RA .I went to 5 doctors in the Miami area and was undiagnosed for a year. I ended up at Uof Penn with stress echo and cardiac cath. I am unable to take vasodilator medication due to low bp. I am treated with coreg and walking.Now my rheumatologist says things like ” i don’t know why you can’t work full time, why aren’t you being treated . notes and all data are sent to my DR . I’m planning an appt, I found that at my work I am listed as having no physical limitations- I plan a meeting with him ,to discuss what has been filled out on my forms by him . I am hurt and disappointed with my care.I need him to understand ,hope i can resolve this.What would you recommend. I am an RN in 5 hrs of work I covered 14,000 steps yesterday. Currently part-time,with long term disability supplement. My income has dropped significantly, I would work full time if able.

  • Lawrence 'rick' Phillips
    2 years ago

    I adore my Rheumatologist. He is caring and knowledgeable and I like visiting with him. I decided long ago that I would only see doctors who laugh with me. I am old enough to do that but young enough to still young enough to have a great laugh.

  • Lisa Emrich author
    2 years ago

    Hi Rick,
    That’s so great that you laugh with your doctors. I like that! Thank you for sharing.
    Best,
    Lisa

  • Ebkie
    2 years ago

    The first thing I need in a rheumatologist is recognition that I have RA (well JRA and I’m now an adult). After that I need rheumatologists that don’t rely too heavily on bloodwork when determining disease activity. Sometimes it’s not perfectly correlated.

    I’ve only seen my current rheumatologist twice but he’s great. He regularly talks (on the phone!!) to another one of my specialists A LOT (6+ times already) due to my complications. My second exam wasn’t comprehensive but joint issues aren’t a priority right now. There was a change in treatment but it was dictated by organ involvement.

    Only thing is I wish it was easier to make an appointment with him. But I think with the open communication between my doctors I’m well taken care of.

  • Lisa Emrich author
    2 years ago

    Hi Ebkie,
    That’s great! I agree with you regarding not relying too heavily on blood work. I’m sero-negative and basing treatment decisions on blood work would not make sense. I’m glad that you have a rheumatologist who is so proactive in communicating with you and your other providers. It’s wonderful when your doctors work together as a team. Thanks so much for sharing!
    Lisa

  • Erin Rush moderator
    2 years ago

    I am glad you have a good rheumatologist, Ebkie! That is great! But, as you know, the one drawback of having a good rheumatologist is that it can be hard to get in to see him sometimes! I am so glad your rheumatologist is willing to communicate with you and other specialists about your RA. Thank you for sharing with us. Best, Erin, RheumatoidArthritis.net Team Member.

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