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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Sunday Mar 22, 2020
Sunday Mar 22, 2020
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@ifAiArthritis) or email us (podcast@aiarthritis.org).
Show Notes: Episode 20 – “COVID-19 & AiArthritis: Special Series Episode 2”
00:52 - Tiffany welcomes listeners and co-host, Matt Iseman, host of American Ninja Warrior
01:37 - Tiffany and Matt welcome special guest, Dr. Alfred Kim, a rheumatologist with Washington University
03:08 - Dr. Kim is fielding many questions from patients and other physicians about COVID-19
05:05 - Viral infections tend to wreak more havoc on patients who are immunosuppressed (either by disease or medications)
05:34 - Anecdotal evidence suggests there is a subset of patients with COVID-19 who have too much inflammation and may be helped by immunosuppressive therapies
05:48 - Other patients may be harmed by these same medications
06:55 - At this time there are no recommendations regarding discontinuing immunosuppressive therapies during the COVID-19 outbreak
07:44 - Dr. Kim has been recommending continuity of immunosuppressive therapies to his patients while we await more data
07:54 - Taking higher doses of prednisone is the worst thing you can do for your immune system and could increase morbidity and mortality
08:30 - Dr. Kim recommends not using any prednisone (or the lowest dose possible if it is absolutely necessary)
09:03 - Patients who have a lower baseline immune fitness may have an easier time with COVID-19 than a patient who has a higher baseline immune fitness
10:20 - Dr. Kim doesn’t want to discourage patients from pursuing vitamins or homeopathic prophylactics because he has no data to suggest they are harmful, and if nothing else, the placebo effect from them could be helpful
11:16 - There is some preliminary data to suggest that there may be some harm from NSAIDs and some benefit from anti-malarials (including Plaquenil)
12:40 - The data suggesting Plaquenil was beneficial is problematic because it excluded all patients who were unable to complete the course of medication for any reason - including those who became more sick or died
14:18 - Dr. Kim is very uncomfortable with the government suggestion that patients with COVID-19 should be treated with Plaquenil because the data to support that conclusion is not sufficient
16:13 - Dr. Kim recommends patients follow the general guidelines available to the public, but he also tells his patients to follow him on Twitter @alhkim so that they can have ready access to new information as it comes out
20:20 - As soon as the President of the US announced that Plaquenil could be used to treat COVID-19, patients would had already been taking Hydroxychloroquine immediately became afraid that they would not be able to access their medications
21:26 - None of the US distributors of hydroxychloroquine have any remaining stock, so the pills available at local pharmacies are all that there is
22:00 - The hope is that more manufacturers will begin producing hydroxychloroquine
22:36 - The VA system has restricted the use of hydroxychloroquine to COVID-19 patients ONLY, so AiArthritis patients who were taking it can no longer get it through the VA
22:44 - Hydroxychloroquine has a very long half-life and takes 30-40 days for your serum blood level to reduce by half and will take 6 months for it to be completely gone
23:08 - AiArthritis patients would probably be OK for a month or two in the event of a shortage, but after that they would really need access restored or a different medication if possible
24:04 - Patients may want to consider refilling all available medications in case of a hard quarantine
25:50 - Telemedicine appointments (to avoid in person visits) are more difficult for the physician because they cannot examine the patient and require the patient to be able to communicate problems and concerns verbally and accurately
30:00 - An increase in the accessibility of Telehealth appointments may allow patients to access clinics or hospitals or specialists they want to see regardless of their physical location
33:37 - Dr. Kim describes the American situation with testing for COVID-19 as frustrating and too late
34:18 - Dr. Kim estimates that the number of cases in the US is underreported by 5-10 times as a result of the lack of access to testing
35:04 - A private company is offering at-home COVID-19 testing for patients who qualify and can pay $130 for it
37:54 - Dr. Kim recommends self-quarantining if you have any symptoms of illness if you have no access to testing
38:10 - Immunosuppressed patients may shed more viral particles than patients in the general population, so AiArthritis patients may be more likely to spread the virus to others if they contract it and do not self-quarantine
38:22 - One study found that aerosolized COVID-19 may be able to last several days in the air after being expelled by a sick individual and up to 3 days on non-porous surfaces
43:12 - Allergies often have itchiness associated with them, so itching is pro
43:28 - A common cold is over quickly
43:39 - Flu and other respiratory viruses are difficult to distinguish from COVID-19
44:29 - Influenza tends to cause body aches
44:38 - A primary symptom of COVID-19 appears to be diarrhea, not necessarily fever
47:34 - Patients should seek medical care if they have respiratory distress when at rest or a fever that is unresponsive to medicine
51:14 - To avoid misinformation, follow Dr. Kim, the CDC, and other reputable sources for scientific information on social media
51:25 - Some stand-up comedians are hosting shows from their living rooms on social media, which may be a nice relief from social isolation
51:50 - Try to connect with other people over text, Facetime, Zoom, or social media so that you are isolated physically, but not emotionally
52:49 - Outlets for recreation and connection will be key for mental health during social isolation
53:02 - Prioritize outdoor activity as much as possible for wellness and to minimize joint pain and stiffness
55:50 - We hope after society returns to “normal” that people will understand that immunocompromised people are not only elderly
59:00 - You can find Matt Iseman on Twitter and Instagram @MattIseman
59:25 - For more information on COVID-19, you can join IFAA’s COVID-19 group on Facebook by connecting to our page @IFAiArthritis
1:00:03 - If you would like to take a seat at the table, visit us on the web at aiarthritis.org/podcast, on social medias @IfAiArthritis on all platforms, or email us @ podcast@aiarthritis.org
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