We have created this blog to keep you up to date with the latest news and happenings in Lupus Euorpe.
We hope you enjoy reading it.
Alain Cornet- Posted on
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The ERN ReCONNET webinar
"#Pregnancy and #Antiphospholipid Syndrome"
will take place on
29th March at 16 CET.
The Speakers are @sil_aps and Angela Tincani, moderated by Ricard Cervera.
You can register for the webinar at this link: https://us02web.zoom.us/webinar/register/WN__YOuvoqlQCWrXH6cj7tTWw
#APS
✅A first patient from #CRMR #RESO with refractory severe #lupus was successfully treated by anti-CD19 CAR-T (in collaboration with G Schett, Germany)
🎧 Our #EMEUNET podcast is back in a new format!
👥 Prof Mackensen joins hosts @philipp_j_bosch & @Juge_P_Aus to discuss his recent publication on CAR-T cell treatment in SLE
Read the paper 👉 https://tinyurl.com/mk99te7a
Listen to the podcast 👉 https://spoti.fi/3J5gkwg
It may be true that anti-dsDNA titres can fluctuate with disease activity in #SLE, particularly in #lupus #nephritis. Bear in mind:
-Flares can occur without an increase in anti-dsDNA
-High anti-dsDNA does not necessarily mean flare
-Always check C3 & C4 levels
-Clinical picture https://twitter.com/antonypsarras/status/1639568901506727939
Questions during @SLEuroSociety advanced workshop on #lupus:
What is your clinical impression on anti-dsDNA levels before #SLE flares?
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🚨 Call for patients🚨
🔊 INSPIRE SURVEY from the University of Cambridge.
This survey aims to improve the understanding of neurological symptoms in SLE and other rheumatic conditions.
Lupus is a very heterogeneous disease, which means that it affects people of different ethnic backgrounds and gender in different ways.
That is why, to get accurate research results, as many different groups as possible must be represented in the sample.
The INSPIRE survey was launched last year to get the patient experience on the assessment/monitoring of neurological symptoms, but they received very few responses from people from ethnic minorities.
That is why the research team led by Dr Chris Wincup has launched a new survey.
The new INSPIRE survey can be completed by lupus patients or their carers from around the world.
🟣 Please share as much as possible 🟣 in order to get a sample that includes a good proportion of all ethnic groups.
Thank you!
bit.ly/inspire_patients_short
I did it a second time and no it went good till the end
The survey was demolished.
Discoid lupus erythematosus (DLE) is the most common form of chronic cutaneous lupus erythematosus. It is characterised by persistent scaly plaques on the scalp, face, and ears, which can progress to scarring, atrophy, depigmentation, and permanent hair loss in affected hair-bearing areas (Source: DermNet).
This study, published by Prof Marca Mosca et al., describes 2 cases of severe and refractory DLE successfully treated with anifrolumab, a human monoclonal antibody.
Although anifrolumab has been recently approved for the treatment of SLE, data from randomized clinical trials have shown a significant difference in cutaneous response rate in patients treated with anifrolumab from those in the placebo group.
While the effectiveness of this treatment in real life and in different types of skin lesions has yet to be determined, it could represent a new valid opportunity for treating DLE.
jamanetwork.com/journals/jamadermatology/article-abstract/2798967
We know some of you missed the great seminar recently delivered by Prof. Laurent Arnaud.
Well, no worries!
You have the chance to see it again, thanks to the European Federation of Internal Medicine (EFIM).
"Challenges in 2023 for Systemic Lupus Erythematosus".
Next 29th of March at 18:00 CET (i.e. Paris time).
Register for free here!
us02web.zoom.us/webinar/register/WN_O5yMwjfgTS29pMKvOZfgZw
Did you miss this ERN RECONNET webinar with Lou Kawka and Prof Laurent Arnaud about #fatigue in #SLE?
Now you have the chance to watch it!!! 😃🙌
www.youtube.com/watch?v=7jc7SiP5BsA
