Show Notes: Episode 22 

00:52 - Tiffany welcomes listeners to the show

01:02 - Today’s episode will be a highlight reel featuring four of the episodes that have previously aired on AiArthritis Voices 360 for those who may have missed them

02:40 - Tiffany introduces Dr. Apostolos Kontzias from the Center of Autoinflammatory Diseases

03:12 - Dr. Kontzias explains the distinction between autoimmune and autoinflammatory, which both stem from the immune system, just different sides (“innate” vs “acquired”)

04:32 - Autoinflammatory patients usually lack laboratory markers for autoimmune disease - despite inflammatory symptoms - which can cause a diagnostic delay 

04:55 - Both autoimmune patients and autoinflammatory patients can present with arthritis and other common features (fatigue, varying degrees of fevers)

05:48 - Autoinflammatory syndromes are innate (of unknown cause, from the primal part of the immune system) and thus can present early in life, but some do not present until adulthood

07:14 - Either type of immune response may be initially triggered by environmental factors, but also environmental factors can trigger disease activity

07:44 - Viral infections can trigger autoinflammatory syndromes

07:57 - Menstruation can trigger increases in symptoms for female patients for either type of disease

08:27 - Some conditions “bridge” the two types and can have features of both adaptive and innate immunity. 

09:46 - By definition, patients with autoinflammatory conditions have an immune system that does not recognize the patient’s own structural components of their cells

10:49 - Fevers and rashes are often markers for autoinflammatory conditions. General markers for inflammation without laboratory results that support traditional autoimmune diagnoses are also predictive of autoinflammatory conditions

13:09 - Tiffany thanks Dr. Kontzias for his time

13:21 - Tiffany welcomes Kaleb Michaud from FORWARD Databank

13:49 - Registries monitor patient journeys to benefit scientific understanding of rheumatic diseases

14:51 - Kaleb explains his decision to become a medical researcher 

16:07 - Tracking patient symptoms over time can lead to more accurate diagnosis and treatment because patients may not be aware of incremental progression 

17:48 - Long questionnaires encourage patients to thoroughly interrogate their own health and reflect on how they are doing

18:44 - One patient, Mary Felstiner, wrote a book titled Out of Joint about the experience of completing the questionnaires.   

21:20 - People who participate in registry studies statistically live longer than patients who choose not to participate. 

22:15 - Tiffany is joined by patient co-host Deb Constein and Dr. Aurélie Najm, a rheumatologist and clinical researcher currently serving as the co-chair for the European League Against Rheumatism’s Synovitis Study Group

22:49 – Aurélie introduces herself

22:57 - She is researching providing tailored treatments to patients with rheumatoid arthritis 

23:27 - Aurélie is the co-chair of the EULAR Synovitis Study Group, which is studying synovial tissue to determine the best treatment for each patient

24:07 - Tiffany and Deb are patient research partners for OMERACT

25:37 - Patterns of inflammation within the synovial tissue can predict the future evolution of disease for that patient and which anti-rheumatic drugs may be more effective for that patient

26:45 - AiArthritis is interested in this research because we support anything that reduces delays in getting patients access to the right treatment

28:00 - Deb discusses her experience with joint biopsy procedures

30:38 - The two methods available for obtaining synovial samples from joint spaces are arthroscopic or ultrasound guided biopsy

32:13 - Explaining the purpose of any procedure to the patient, especially when procedures are for clinical research and not necessity, is critically important.

33:40 - Volunteering for procedures to support clinical research is “an investment in the future.”

34:35 - Our organization seeks to help researchers develop the right protocols to recruit patient participants 

34:54 - Visit aiarthritis.org/podcast to learn how you can help 

35:14 - Tiffany introduces special guests Dr. Alfred Kim and Jerik Leung, who have done research on patient needs and communication barriers 

35:56 - Tiffany explains the goals of the Rheumy Rounds Series

36:54 - Jerik’s research showed that patient goals did not always align with the physician’s goals, especially relating to medications and side effects

38:44 - Dr. Kim says the primary goal of rheumatologists is to determine what is actually going on with the patient. Are additional testing or imaging studies necessary? Are the notes from the previous doctor or patient provided information enough?

39:35 - Practicing Rheumatology is somewhat similar to practicing psychiatry in that there are usually not clear cut answers divined from test results. The physician has to review as much information as possible to arrive at a correct diagnosis.

40:34 - Rheumatologists must also prepare to have a difficult conversation with patients if the diagnosis doesn’t align with what they have been told previously or what they believe or don’t believe they have

41:11 - Sometimes patients arrive at a new doctor with incorrect information in their chart because a previous doctor had to use a certain diagnosis - even if it wasn’t the correct one - so the patient could get access to a needed medication

42:30 - For many physicians, the emotional aspects of the disease aren’t actionable from a clinical perspective. 

43:14 - Patients may be on the defensive at the outset of appointments due to previous negative interactions with rheumatologists

44:06 - Learning to advocate for yourself is necessary for patients living with chronic illnesses

46:06 - Mutual trust is critical between the patient and physician

46:59 - Occupational therapy support may increase patient compliance with their treatment plan and help them and their caregivers achieve a better quality of life

47:40 - Physicians may not address complaints from patients that they are not equipped to handle, but they should be able to refer the patient to someone who can help them

49:01 - Most common reasons people “fire” their doctor: they feel unheard or treatments are not meeting their expectations

50:27 - Both doctors and patients could potentially benefit from training on how to interact positively and productively with each other 

52:56 - Tiffany invites listeners to join our new Facebook group @IFAiArthritis to get involved

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