• Amy Suto

Getting Diagnosed with Rheumatoid Arthritis: What to Expect from Your First Rheumatologist Visit

I have this thing called "white coat syndrome" -- basically, a medical term for "my palms start to sweat when I enter a doctor's office." It gets to the point where my heart rate jumps the moment I see a white coat.

This probably stems from watching too much House as a kid, which didn't help my hypochondria. So, when I got diagnosed with RA and doctors visits became the norm, I had to get better at approaching this whole medical-professional-fear thing. The first visit with my rheumatologist was the most daunting, because I didn't really know what to expect.

Anyways, if you're newly diagnosed with rheumatoid arthritis, you don't have to fret the first visit with your rheumatologist. Here's everything you need to think about so you can be calmer and better prepared!

What to Expect from Your First with Your Rheumatologist

Before arriving at your rheumatologist's office, you've probably gotten a blood test from your primary care provider that indicated you most likely have rheumatoid arthritis.

From there, your primary care provider will refer you to a rheumatologist to review your results and symptoms.

Here are some things to expect in your first appointment:

  • Your rheumatologist will examine you and will want to know of any physical symptoms you're experiencing. They'll also want to get a sense of your pain level. If you keep a symptom journal, bring that to your appointment.

  • They also may have you do another blood test on-site. I didn't expect this and was caught off-guard (I haaaate blood draws) and ended up fainting on my way out (whoops) because I didn't eat enough for breakfast that morning. So, maybe eat a good breakfast before your appointment :)

  • Expect to be prescribed prednisone on your first visit depending on your symptoms. Prednisone (aka steroids) are often used as the first line of attack against swelling or other intense symptoms. Steroids have a lot of side effects, and I wish I would have asked my rheumatologist more about them in my first visit.

Your rheumatologist will also do some more routine things like collect your medical history, and confirm your diagnosis of rheumatoid arthritis.

But before you even arrive at your first appointment, you should also think about what questions you want to ask.

Questions to Ask Your Rheumatologist at Your First Visit for Rheumatoid Arthritis

There's a lot of aspects of our medical system I think should be reformed, particularly the aspect where so much of proper medical care is a patient's responsibility.

You've got to take initiative to learn about your condition and make decisions, and your doctor is likely going to still take more of a backseat to be shielded from liability rather than give suggestions that could be helpful.

For example, I went out and researched getting a nutritionist online, and it ended up being the best decision I've made so far (and would recommend it for anyone in a heartbeat!) and my doctor didn't recommend this to me at all.

So, here are some of the questions I would recommend you asking your rheumatologist on your first visit:

  • Based on my medical history, is there anything you think could have triggered my disease to start?

  • What supplements, lifestyle changes, or eating habits do you think I should be thinking about?

  • What are some of the side effects of the drugs you're recommending to me to manage my rheumatoid arthritis?

  • If my symptoms go away, would we be able to think about potentially weaning me off of my medication?

If your rheumatologist says no to the last question, you're going to be on these drugs for the rest of your life and you will never get off of them -- that's a HUGE RED FLAG. Every good rheumatologist should be cautiously optimistic about you being able to get off your meds. Obviously, everyone is different, but if you care about using holistic methods and getting off your medication is a priority for you, make sure your rheumatologist understand that!

You Can Always Get Second Opinions or Find a Different Rheumatologist

Remember, your rheumatologist works for you. If you don't like your doctor, request your primary care provider to recommend you to another rheumatologist.

You deserve to get the care you need -- don't let anyone tell you otherwise!