You just scheduled your first appointment with a rheumatologist – now what?  Whether you think you have lupus or not, you are probably feeling scared, confused, and tired of filling out repetitive forms … and maybe a bit alone.   Your body, your entire world may seem out of control.  Yet, you can take back some control and get the most out of your rheumatology visit if you prepare and know what to expect.  Here are some tips to help you with that first visit!

• Introduction:  What is a rheumatologist and what should you expect?
• Before the Visit – Preparing for your appointment.
• During the Visit – What to expect and what to do.
• After the Visit – What are your next steps?
• In Conclusion

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Introduction

The first thing to realize is that a referral to a rheumatologist is not something to be feared.  It may not even mean that you have lupus.  It is an important step to getting an accurate diagnosis so that you know what to do and what to expect going forward.  It is an opportunity to see a specialist who will look at you with a fresh set of eyes and a perspective unlike other healthcare providers you may have seen.

What is a rheumatologist?

A rheumatologist is a healthcare specialist, an internist, who focuses on rheumatic disorders – usually diseases that affect joints, bones and muscles.  These also include autoimmune conditions such as rheumatoid arthritis, scleroderma, Sjögren’s syndrome and of course, lupus.  They may have offices in outpatient clinics or associated with hospitals.

If under the age of 18, you will probably see to a pediatric rheumatologist.  These physicians specialize in needs of children and young adults with autoimmune conditions.

What should you expect during the visit?

Some of the same:  Visiting a rheumatologist may not be that different from your experiences with other physicians.  As a specialist, they will have received your referral from your primary care physician and perhaps other healthcare providers.  They should have their medical notes and access to your records.

Lot’s of questions:  They will probably ask you questions that you have heard dozens of times before from other healthcare providers.  This is can be frustrating, but it is also important for them evaluate your condition with a fresh set of eyes and ears. Just be as honest and as patient as you can.

The Physical Exam:  Your visit will probably include a physical exam, so wear loose fitted clothing and be prepared to put on a gown.  The rheumatologist may check you from head-to-toe for signs of rashes or other skin conditions, inflammation (redness and warmth.  They may ask you to move or bend your joints to assess your mobility and levels of pain.

Tests:  Your visit will probably also include several tests – requiring urine and blood samples, and perhaps imaging exams.

Other Referrals:  Your rheumatologist may feel that you need to see other specialists as well, such as a nephrologist if kidney damage is a concern, or a cardiologist if they suspect heart involvement.

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Before the Visit

• Observe and keep a log of your symptoms. Try to describe them in detail and write your symptoms down as much as possible before your first visit.  This is a great idea with any medical condition and it is the best way to help your rheumatologist accurately diagnose your condition in the least amount of time.  Having a written, personal history of your symptoms is one way to make sure you don’t forget anything, and it will make it far easier to bring your rheumatologist up-to-date.

Try to describe the kind of symptom (pain, rash, swelling, etc.), where on your body you noticed it, and how long it lasted.  Diffuse, chronic symptoms like fatigue, depression or even dull pain may be difficult to describe, but these symptoms are just as important to track.

• Make sure your appointment is confirmed. Your visit was probably set up through a referral and any medical insurance provider you have already approved the visit.  However, it is still a good idea to make sure everything is confirmed and that your visit is confirmed.  If you are able to check in electronically ahead of time, that will also save you and the office staff time...mmm

• Print a current list of your medications. They may have access to your records or e-chart, but sometimes these are not always accurate..mmm
• Print or write down your medical history. Having a printed copy of your medical history and your family history is very useful – not only for the rheumatologist, but also to help your own memory..mmm

• Ask someone you trust to come with you to the appointment – not just for the emotional support, but also to help with taking notes or remembering questions to ask.

• Take a notebook, smart phone with your calendar. A notebook or smart phone is where you can prepare your list of questions (see below) for the rheumatologist and to take notes during your appointment.  It could your symptoms log, medical history, etc.  A calendar is useful for scheduling future appointments – if necessary – while you are still at the rheumatologist’s office.

• Drink lots of water. This will make it easier to provide a urine sample if needed.

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During the Visit

• Arrive Early.  There may be several extra intake forms to fill out if this is your first appointment with this rheumatologist..mmm

• Describe your symptoms clearly and honestly.  You know yourself better than anyone else.  Describe your symptoms clearly – start with the most important ones, and don’t leave anything out.  Also, don’t worry about sounding like a whiner.  You do not have to put on a brave face or try to impress a new doctor that “everything is okay” if it is not.  Remember, you are your own best advocate!mm

• Ask questions. You might not get all the answers you want, but you should get the answers you need. You deserve to be heard and have your concerns taken seriously.  It is important to ask your most important questions first, so that they can be answered while your rheumatologist has the time to answer.  Don’t ask “door knob” questions – those important, but last minute questions that you may leave just as they are about to leave the room.  Rheumatologists, even more than most specialists, have limited time to spend with each patient.

Here are some examples of questions you might ask the rheumatologist:

• • Is this lupus, a similar condition or a combination of overlapping syndromes and how would we know?
  • What should I do if my symptoms flare or worsen?
  • How often should I schedule future visits and what lab tests will be needed at each one?
  • What are the possible side effects of my medications?
  • What kind of other symptoms should I look for?
  • If I notice new symptoms or changes to current ones, who should I contact first, you or my primary care physician?
  • What changes to my diet or lifestyle do you suggest?
  • What other complimentary therapies or other resources would you suggest?
  • Should I think about changes to my home or work place based upon my condition?
  • Do you know of a support group that I could join?

• Listen closely. It can be easy to get overwhelmed during a rheumatologist visit, yet the better you listen and take notes, the more likely you will get the answers you need.  It also helps to have a companion to help listen as well..m

• Be patient. Rheumatologists are not perfect and lupus is a very difficult disease to diagnose.  They may ask obvious or repetitive questions, which can be frustrating.  However these have a purpose.  While your rheumatologist will see reports made by your other healthcare providers, they will also try to see you with fresh eyes and that may mean redundant questions.

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After the Visit

• Check on your next appointment. Even before you leave their office, set up your next rheumatology appointment.  It is easy to forget to do so after you leave their office, and any delays can mean unnecessarily long waits before you get to see your rheumatologist again..mmm

• Debrief with your appointment buddy right away. It is easy to want to relax after the appointment.  However, it is very helpful to compare notes while the experience is still fresh in your mind and in the memory of your companion,  Whether you have been given a lupus diagnosis or not, you should leave your appointment with a clear understanding of your rheumatologist’s concerns, advice and suggested treatment plan.  Speaking of which ….mmm

• Stick to your treatment plan. It is critical that you take your prescribed medications as directed and that you are consistent with any and all therapies.  All of your healthcare team members, including your rheumatologist, will be basing their opinions about your condition and future treatments on you sticking to your treatment plan.  Your health may depend upon it!

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In Conclusion

A referral to a rheumatologist is an important step in finding out whether you have lupus or not.  It can be scary and confusing and you may or may not get a definitive diagnosis in one visit.  However, it helps to think of it as an opportunity to have an expert in autoimmune diseases take a look at your condition with fresh eyes … and hear your concerns with fresh ears.

Ultimately, the more prepared you are for this visit, the better your chances at getting an accurate diagnosis in the shortest amount of time … and that means the healthiest possible outcome for you!

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References

Cleveland Clinic. (2020, June 4). 3 tips to make the most of your first rheumatology appointment.Rheumatology & Immunology. https://health.clevelandclinic.org/first-rheumatology-appointment/

St. Paul Rheumatology, P.A. (2021, October 12). What will a rheumatologist do on the first visit?https://stpaulrheumatology.com/2021/10/what-will-a-rheumatologist-do-on-the-first-visit/

Verity, S. (2022, June 6). Rheumatologists: What they do, and what to expect. WebMD.https://www.webmd.com/rheumatoid-arthritis/rheumatologist-visit

West Virginia University Medicine. (n.d.). What to expect at your first rheumatologist appointment. https://wvrheumatology.com/what-to-expect-at-your-first-rheumatologist-appointment/

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Author: KFL Team

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