Expectations of Treatment: Rheumatology

Having managed axial spondyloarthritis (AxSpA) for the past few years, I have not always had great results when dealing with treating physicians. Nevertheless, 99% of the time I have been listened to, received effective treatment, and most of all treated with respect as a patient. My level of expectation consists of some basic needs necessary when I head into the office for treatment by my rheumatologist. When any one of these falls short, or below my level of expectation, I express concern and address the issue head on. Below are some of my basic needs that must be met when being treated as a patient.

Provide information needed to better understand and treat my condition

When I first learned I had an immune-mediated inflammatory disease, I'd never heard of it prior to seeing my rheumatologist. I was terribly confused and lost. Getting information on axial spondyloarthritis was essential to my understanding of what I had going on, how I was expected to treat it, and what to do should it not get better. Learning this, I was able to ask for what I needed when one therapy or medication was failing me or I felt I was heading in the wrong direction with regard to therapy. Nothing is worse than having treatment for a condition and continuing to get worse.

Willingness to treat with several therapies and medications

I've learned that one therapy alone will not provide the ultimate relief from spondyloarthritis (SpA), as it can be a long drawn-out journey - a spectrum - where the continuum is diverse. And, because this disease is unique to the individual, I am constantly assessing and reassessing where I am on this spectrum, and what therapies at the specific time would be best to use. The culmination of different approaches is essential with inflammatory arthritis as one technique may be of benefit and others not so much. I've personally tried 5 biologics and none worked as well as the JAK inhibitor Xeljanz for my level of enthesitis pain. The only way I knew this was by my rheumy offering the next best option.

Willingness to listen...to my ideas, fears, and opinions

When I choose to walk into the rheumatologist's office, it’s just that, a choice because I feel safe there. I need this person to listen to what my greatest fear is about having this incurable disease. I also need them to hear about my ideas on certain concepts, such as the fact TNF blockers seem to be ineffective and that I'd like to move away from them as treatment, with them being agreeable. I would also like to offer my perspective on things, such as the amount of enthesitis I have and where it is affecting me, and how the inability to walk or go to work is affecting my personal or professional life. It leaves open a chance for discussion toward better treatment and greater improvement.

Provide needed support and referrals to specialists

I have ankylosing spondylitis and this means I will need a caring circle of trusted physicians to help me cope and continue on in life. I need to address so many different aspects and one doctor, a rheumatologist alone, cannot support me with all this entails. I will need a pain management and rehabilitation specialist for therapy such as injections, stimulators, and pain medication. I will need physical therapy to help me adjust to a spine that is fusing together and offers different ways to move.

I will need counseling and possibly medications related to my depression and anxiety and how I cope with the life I now find myself living. Support from a spine or orthopedic surgeon may be necessary to help with peripheral joint impairment occurring from the damage inflammation is having. And, if this physician fails to offer any of these to help treat this disease, I may find another rheumy who can offer it to me.

Willingness to provide immediate support on flares

Last but not least is the fact flares happen, and quickly. I find that one hour I overdo it a bit and the next I am in severe writhing pain. Or, one moment my hip is in excruciating pain and the next my neck is throbbing. I would like to be able to put a call into my rheumatologist and/or to have on-hand prednisone to help with this flare. I need to have access to the necessary treatment should I begin to feel worse. Easing my pain needs to be swift and having a rheumy who trusts me enough to have this corticosteroid on hand to use for such worsened conditions is essential in my book.

What if my physician is not meeting expectations?

What it comes down to is addressing the issues in the office. When I continually fail to get the 5 results above and I am not listened to or being treated appropriately, I fire them. It is not a rushed decision or something I take lightly, but only after I cannot resolve the concerns with my rheumatologist. It may be inconvenient but it's more troublesome to go through months of therapies that continually do not help my condition. Fortunately, I have only had to use this tactic once in the past 10 years, but it was for good reason. It was not a rheumy but a pain management doctor, as I was told I "overwhelmed him", if you can believe it.

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What are your top 5 expectations when seeing your rheumatologist or other physicians in your circle of doctors? How are you handling not having expectations met?