R Polychondritis

Awareness account for the rare disease Relapsing Polychondritis. RTs do not mean endorsements of info. Always consult a HCP.

[vasculitides @vasculitides]

Relapsing polychondritis in a patient treated with Dupilumab https://t.co/yErLaEyG91

[Robert, C.N., Pharm Tech. @Robertvegan7]

Spike proteins can cause too much collagen to be made in the heart and lungs.
And there is this possibility also.

Relapsing polychondritis after COVID‐19 vaccination - PMC https://t.co/9N1c0ISXEu

[Dr. John Cush @RheumNow]

Manifestations and Treatment in Relapsing Polychondritis

A large multicenter cohort study of Relapsing Polychondritis (RP) describes the clinical manifestations and treatment approaches to this rare, heterogeneous, multisystem disease.

https://t.co/Gz2qwtC4jZ

[Dr. John Cush @RheumNow]

Kyoto U. cohort study of 55 relapsing polychondritis pts (503 Pt-yrs) Rx w/ TNFi, IL-6i or none -- Crude relapse rates were 46.9/100PYs NoBio, 22.4 TNFi, & 12.5 IL-6Ri. Adjusted relapses signif lower w/ TNFi (IRR 0.4) & IL-6Ri (IRR 0.2) vs no biologic. Estimates for hospitalised Infx were imprecise. https://t.co/E9FKPsuOUl

[Alberto Giraldo @alb_giraldo]

Biologic exposure (TNF-α inhibitors [TNFi] or IL-6 receptor inhibitors [IL-6Ri]) is associated with substantially lower relapse rates in relapsing #polychondritis (RP) compared with periods without biologics, as demonstrated by a recent retrospective cohort study (Kyoto University Hospital, 2000���2023).

𝗦𝘁𝘂𝗱𝘆 𝗽𝗼𝗽𝘂𝗹𝗮𝘁𝗶𝗼𝗻
◦ 55 adults with RP followed for 503.5 person-years (28 never exposed to biologics; 27 ever exposed).
◦ Follow-up time was divided into No-Bio, TNFi, and IL-6Ri periods.
◦ Primary outcomes were relapse and hospitalized infection.
◦ Analyses used negative binomial regression with person-time offset, adjustment for prespecified covariates, and regression standardization for absolute rates/differences.

𝗠𝗮𝗶𝗻 𝗿𝗲𝘀𝘂𝗹𝘁𝘀
◦ Within the ever-Bio group, crude relapse rates were 46.9 (No-Bio), 22.4 (TNFi), and 12.5 (IL-6Ri) per 100 person-years. In adjusted models:
• TNFi vs No-Bio: IRR 0.4 (95% CI 0.2–0.8); adjusted rate difference −54.0 events per 100 person-years (95% CI −141.5 to −5.5).
• IL-6Ri vs No-Bio: IRR 0.2 (95% CI 0.1–0.4); adjusted rate difference −68.3 events per 100 person-years (95% CI −149.8 to −21.4).
◦ Hospitalized infection IRRs were imprecise (TNFi 0.3 [0.1–1.4]; IL-6Ri 0.7 [0.2–2.6]).

Overall, biologic periods showed lower relapse incidence than non-biologic periods, while data on serious infections remained inconclusive due to limited precision.

*Nakayama Y, Aitani Y, Shirakashi M, et al. Association between biologic exposure and relapse incidence in relapsing polychondritis: a retrospective cohort study. Rheumatology (Oxford). 2026;65(6):keag305.
🔗https://t.co/BiGUyq5HCC

[Lupus Europe @LupusEurope]

💊 Adherence works best when patients & healthcare professionals work as a team.

Patients need a safe space to explain what makes it difficult. HCP need to ask the right questions.

Prof Nathalie Costedoat-Chalumeau explains why this conversation matters

https://t.co/wtoXfv82mF

[Laurent ARNAUD @Lupusreference]

✅ What is the relationship between #SLE #brainfog, and pain, stress, anxiety, etc... If you have #LUPUS PLEASE HELP US with the #CORRELATE study. By participating you will get your online brainfog #LBFSS score and help this research 🙏🔁 ️
🦋LINK: https://t.co/10Vg8KPfnJ

[R Polychondritis @Polychondritis]

Check out the fantastic new clinician information leaflet on #RelapsingPolychondritis from Relapsing Polychondritis Awareness and Support: https://t.co/9eeCqSE9Bo #raredisease

[Laurent ARNAUD @Lupusreference]

✅ Our novel @ERN_ReCONNET #ELICIT methodology is published!!!! 👍 #ELICIT is an innovative approach to gather #CONSENSUS 🤝 on complex, 'high-level' concepts related to rare connective tissue and musculoskeletal diseases 🔥
Openaccess 🔓 DOWNLOAD at: https://t.co/E6gHeZXyqW

[Laurent ARNAUD @Lupusreference]

- Do you have #LUPUS? 🦋
- Do you have #BRAINFOG? ⛈
- If so, check the Lupus Brainfog Severity Scale (#LBFSS)
- Using table 3 you can assess the SEVERITY of your brainfog and compare with others
🔓 OPENACCESS FREE LINK: https://t.co/U8BoeiXfDN

[Scholars in Medicine @scholarsinmed_]

Relapsing polychondritis is rare, but that's exactly why it's so easy to overlook.

Watch the full discussion and strengthen your approach to this uncommon but important autoimmune condition on Scholars in Medicine https://t.co/TJrHCy8Nkh

[vasculitides @vasculitides]

Development and validation of a Relapsing Polychondritis disease-specific Quality of Life instrument (ERN ReCONNET RP-QoL) https://t.co/qzn3gRDqOd

[EURORDIS-Rare Diseases Europe @eurordis]

🌟 Who will be the next EURORDIS #BlackPearlAwards Young Advocate?

We're looking for outstanding advocates aged 30 or under who are raising awareness and creating lasting change for people living with a rare disease. Nominate them today! 👉 https://t.co/eVIk5dycd4

[Laurent ARNAUD @Lupusreference]

✅ Development and validation of the Relapsing #Polychondritis disease-specific Quality of Life instrument (ERN ReCONNET RP-QoL) is now PUBLISHED 👍 May this help patients with RP around the world 🌍🌎🌏
📥LINK:https://t.co/HdaMzyDw0E

[Laurent ARNAUD @Lupusreference]

✅ Happy to report that our new @ERN_ReCONNET disease-specific Quality of life (#QoL) outcome mesure for relapsing #polychondritis has been accepted for publication in @RheumJnl 👍 This is a 2y-long highly complex multistep study involving both RP experts and patients 🤝

[EURORDIS-Rare Diseases Europe @eurordis]

⏰ Only 8 days left!

What do 10,700+ people living with rare and undiagnosed conditions tell us about mental health and wellbeing?

Join us on 18 June as we unveil the latest #RareBarometer findings and discuss what must change.

👉 https://t.co/jE089O77O1

[vasculitides @vasculitides]

Incidental Diagnosis of Hypertrophic Cardiomyopathy in Relapsing Polychondritis https://t.co/bjeMEw5SIG

[inmunoes @inmunoes]

Diagnosis and treatment strategies for airway involvement in relapsing polychondritis: a comprehensive review https://t.co/c90D7FJoLZ #FrontImmunol

[ERN ReCONNET 🇪🇺 @ern_reconnet]

🎓 The @ern_reconnet #webinar “Steroids in Relapsing Polychondritis” is now available on our YouTube channel!
🔗You can access the webinar here: https://t.co/FfosVJv2dz
🌐 More info on RP here: https://t.co/KVmaOuQuCl

[vasculitides @vasculitides]

Aseptic Abscess Syndrome Associated With Relapsing Polychondritis-A Rarely Reported Association https://t.co/m5USfUnyze