Doctor Knows Best . . . or Does He?
We all know that, as with all professions, doctors are not created equal. Ranging from excellent to mediocre to having their medical licenses revoked, physicians all bring different levels of expertise, compassion, and diagnostic skills to their practice. A good doctor will have a combination of knowledge, caring, perception, and responsiveness. However, even if you’re lucky enough to find an outstanding rheumatologist who fully understands RA, is current on the latest research and treatments, and sees patients as whole people rather than as a sum of their symptoms, that doesn’t mean that you’ll always see eye to eye with your doctor.
In the fourteen years since my diagnosis, I have had three rheumatologists. The first had incredible expertise, yet his bedside manner was so atrocious that I sometimes couldn’t help from crying in the parking lot after a visit. My next rheumatologist was an ideal practitioner and couldn’t have been more compassionate. However, her office staff was so unresponsive that it was almost impossible to get a return call from a nurse or a prescription called in, and the wait times were so long that I had to set aside half a day for appointments. I stayed with her for 10 years, but finally reached the end of my patience and decided to switch. I’ve been seeing my current rheumatologist for about a year, and so far I’m really happy. He’s very knowledgeable, and he generally puts a lot of stock in what I have to say. Generally.
However, this week I have run into an issue that has caused me to reflect on the roles of doctor and patient. A couple of months ago my rheumatologist added Methotrexate to my treatment plan. It has been at least 10 years since I’ve taken the drug, and he hoped that a) putting me on a half dose would eradicate the side effects I’d previously experienced, and b) it would increase the effectiveness of my Orencia injections. I was open to trying it, and shared his hopes. However, the day after my first dose I realized that even half the standard dose of Methotrexate makes me nauseated and exhausted. I’ve taken Zofran to combat the nausea, and have tried to play around with the time I take the medication in hopes that I could experience the worst of my symptoms in the middle of the night. When those efforts proved unsuccessful, I started taking two pills earlier in the day and the third pill that night. That helped a little bit. However, last weekend I was suffering from severe sinus and chest congestion, and I took some cold medicine. I am assuming that having the over-the-counter meds in my system concurrently with the Methotrexate is what accounted for a truly horrendous night. I was not only nauseated, but vomiting to the point of dry heaving. Zofran didn’t touch it, so I upped the ante to Phenergan, which usually knocks me out. While it did allow me to sleep briefly, I awoke as sick as ever, running to the bathroom for another round of dry-heaving. Not pretty.
On Monday morning I called my doctor and said I wanted to discontinue the Methotrexate. Prior to my terrible night, I had already been trying to figure out whether the nausea and exhaustion were worth the minimal improvement the drug has had on my RA. I had planned to stick it out a little longer, as the full effects of Methotrexate can take longer than two months to surface, and some people tolerate the drug better with time. However, curled up on the bathroom floor that night, I thought, “Nothing is worth this.” When I communicated that to my doctor, he said he really wants me to continue the medication, and recommended that I double my folic acid and add a daily dose of Vitamin A. I replied that I was too afraid of another extreme reaction to the meds, and didn’t feel comfortable continuing the medication. He said numerous studies have shown Orencia to work best when paired with Methotrexate, and that he really wants me to stay on the combination a little longer to see the full impact on my RA. We ended up arriving at the compromise that I would try Methotrexate injections.
The conversation left me feeling frustrated, as well as worried about what might happen if the injections are no better, should he want me to continue them anyway. On one hand, I go to a rheumatologist in order to get treatment from someone who has more expertise about RA than I do, so it makes some sense to trust the medical opinion. However, we all know that doctors aren’t always right, and that each person experiences RA and reacts to the medications a little bit differently. In addition, since rheumatologists’ focus is on RA disease activity, it’s easy for practitioners to lose sight of the rest of a patient’s experiences, such as side effects. Yet those of us who are living with both disease activity and side effects can’t just tune out the latter. Therefore, it’s natural to have questions and, sometimes, scruples.
A few years ago my former rheumatologist and I were discussing the pros and cons to two different medications, and she said, “Why don’t you let me take the wheel on this one?” However, in that analogy, if we get into a wreck, I’m the only one who’s going to feel the collision. That makes it incredibly difficult to know when it’s safe to let the doctor do the driving, and when it makes more sense to tell him to pull over.
Right now, what RA tips would most be helpful for you?