When Specialists Collide
If you’ve ever posted or messaged a request for medical advice to RheumatoidArthritis.net, then you’re familiar with our standard recommendation: “Please consult with your rheumatologist.” While we wish that we could answer every question to every community member’s satisfaction, the fact of the matter is that Rheumatoid Arthritis is a disease that varies greatly in terms of severity and symptoms, both from person to person and within the same individual over time. This disease is further complicated by the impacts of side effects of the medications used to treat it. Therefore, adequate medical care requires a face-to-face meeting with a doctor trained in rheumatology.
That being said, as RA is such a complex disease, there are times when even a rheumatologist’s services are not enough. Complications of the condition itself or the treatments used to fight it may require medical assistance from ophthalmologists, dermatologists, podiatrists, orthopedic surgeons, pulmonologists, or cardiologists, to name just a few. Every patient hopes that when RA-related issues require involvement from more than one specialist that the doctors will be on the same page. Unfortunately, this is not always the case.
In the past weeks I’ve struggled with intense illness. A pulmonologist diagnosed me with pertussis (whooping cough). After a couple of weeks of treatment my lungs began to improve. However, my sinuses were more painful and congested than I’d ever experienced with the scores of sinus infections I’ve had in my life. The pulmonologist sent me for a sinus CT scan, which indicated complete impaction of my sinus cavities. When he saw the scan, he said I had a very severe infection, and that I needed to see an Ear, Nose and Throat specialist immediately. When his nurse was told the ENT couldn’t see me until the following week, the pulmonologist himself got on the phone and requested that I be seen within 24 hours. The next day, I was sitting in the ENT’s office.
This specialist agreed that I had a “rip roaring” infection that required aggressive treatment. Confirming this, he put a scope up my nose and saw that my sinuses were full of puss (yuck!). As rheumatoid arthritis and many of its treatments suppress the immune system, I generally have three to four sinus infections a year. However, I’d never experienced one even approaching the intensity of pain and fatigue this mother-of-all-sinus-infections caused. The ENT prescribed a 21-day course of high dosage, heavy-duty antibiotics and a 17-day decreasing course of prednisone that started at 60 mg/day.
Over the next five days, the ENT saw me two more times, as he kept expecting to see rapid improvement in response to this aggressive treatment and we were both frustrated at the slow pace of my healing. Once the infection finally began to abate, he told me to continue to postpone my Orencia infusion another week, at which point we would “talk procedures.”
When I returned for that follow-up appointment, I was hoping the ENT would say there was something he could do that would prevent such a severe infection from ever happening again. Unfortunately, that wasn’t the case. He said he believed RA might actually be causing the inflammation in my sinuses, setting the stage for infection. Because of this, he reduced the 90-95% success rate he typically sees with an in-office sinus procedure to only 50-60% likely to help my case. He wanted me to resume the Orencia infusions that had been suspended for three weeks due to the infections, and then return in a fortnight so he could see what my sinuses looked like with the biologic drug in my system.
I was surprised to hear that RA might be causing inflammation in my sinuses. While I know that rheumatoid arthritis can impact far more parts of the body than joints alone, it never occurred to me that RA might affect the tissues in my sinuses. However, when I went to my rheumatologist the next day in hopes of resuming my Orencia infusions, my doctor disagreed with the ENT. He said that RA does not cause sinuses to swell, but that the disease itself and the immunosuppressant drugs I take to treat it both make me more susceptible to infections of all kinds, including sinus infections. So while the ENT said that my RA was creating sinus inflammation that was leading to infections, my rheumatologist said my RA was leading to infections that caused sinus inflammation. This difference is not purely philosophical, but leads to two distinct treatment paths. The ENT wanted me back on Orencia to reduce the inflammation in my sinuses. My rheumatologist said that with the two serious back-to-back infections I’d had, it wasn’t safe for me to receive an infusion until I was off antibiotics for a month and able to remain infection free. I hate being given varying opinions from two specialists I trust and respect. However, when it comes to RA, I’ve decided I have to listen to my rheumatologist, and I’m now anxiously awaiting the next six weeks until I can resume Orencia treatment. The prednisone I’ve been on has kept joint pain at bay, but I will soon finish it, and I’m worried that I’ll flare long before my doctor clears me for an infusion.
There are so many challenges involved in living with rheumatoid arthritis. I am fortunate that access to health care is not one of my personal challenges, as I recognize this is a huge barrier for many people in need of medical care. In the past three weeks I have received prompt attention and excellent medical care from as many specialists. Yet, I can’t help wishing that they all agreed on the best course of action. The fact that the treatments used to fight RA make me more prone to infections already leaves me feeling stuck between a rock and a hard place. That feeling is only intensified when two specialists disagree on the best course of treatment.