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Waiting times for rheumatology

How did your RA progress while waiting for your first rheumatology appointment?

  1. I have been referred to rheumatology and told that there is a long waiting list. I have unbelievable pain and inflammation in all joints and my fingers are twisting noticeably. Feeling scared and a sense of loss as unable to do many activities I previously enjoyed. Dr has prescribed naproxen and sending me for a hand x-ray to try to speed up my referral. Any advice greatly appreciated.

    1. , I'm sorry that you are experiencing so much pain and inflammation right now. I hope that the naproxen will help. Sending you for hand x-rays is an excellent first step to try to move up the first appointment. Like Jo mentions, definitely call the new rheumatologist's office and ask to be placed on the cancellation list.

      My own diagnosis took several months. At first my neurologist tested me for carpal tunnel syndrome. The result was positive but the degree of CTS didn't explain the amount of pain and disability I was experiencing. After conservative treatment didn't work, I was referred to a hand surgeon. The hand surgeon is the one who took x-rays and suggested that I probably had RA and needed to see a rheumatologist. That doctor was the one who called the recommended rheumatologist and got me a quick appointment.

      I hope that the x-ray helps to get you in to see the rheumatologist sooner. Best wishes, Lisa, RA Team Member

  2. , I am so sorry you are experiencing pain and having to wait for your consult. You are smart to be exploring ways to advocate for yourself! I suggest you speak with your current doctor about getting hand ultrasounds. US can show RA inflammation called synovitis and can be diagnostic for RA. It can show damage earlier than an X-ray. You can request to be on the Rheumatologist’s cancellation list, so if an appointment opens up earlier they can call you. I’ve called every 2 weeks to politely and briefly ask if an earlier appointment had opened up. (You’ll need to see how the receptionist responds to this; you don’t want to be on their bad side!)

    Personally, it took 2 years for me to get diagnosed. It’s a complicated story, including a year with a Rheumatologist that denied my symptoms. A Hand Ultrasound finally confirmed the diagnosis and got me an appointment with a second Rheumatologist. Yes, my disease did progress - I experienced increased pain, fatigue and mobility issues. It resulted in my retiring early, a month prior to be seeing by a second Rheumatologist who diagnosed me and began treatment. If I had started treatment earlier, I may have had more success with medications and been able to work longer. But, that’s something I will never know for sure and I am working on not focusing on.

    1. Your question brings up a much bigger national issue: the shortage of Rheumatologists. Treatment within the first year of symptoms is essential to early and good control of RA and prevention of permanent damage.Rheumatology practices are not turning patients away out of spite. There are not enough appointment hours in the day for them to see everyone. This puts patients and doctors in a painful dilemma.

      1. Thank you for your replies, I really appreciate it. Tbh I'm scared and grieving for the things I can no longer do. Glad I found this community x

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