Month: July 2016

World Arthritis Day – share your story

This time it is Katharine (photo starring Bob the dog) who has shared her story. Go to http://worldarthritisday.org/our-campaign to share yours!

Questionnaire on pregnancy in Lupus & other rheumatic diseases

Dr. Joseph Joseph an associate professor in Rheumatology at the University of Nicosia is conducting about women who gave birth after their diagnosis. For more information please visit the website: www.pwird.com If you fill the criteria to reply, your contribution will be much appreciated. Once the survey is completed results will be shared with LUPUS EUROPE. […]

Live Twitter Feed

Lupus Europe Follow 3,503 2,509

Lupus Europe is the umbrella association of currently 29 national lupus self-help organisations throughout Europe, and supports people with lupus in Europe.

Retweet on Twitter Lupus Europe Retweeted

; Richard Conway @RichardPAConway ·

3 Jun 1532718997778604034

WIN-Lupus. RCT of stopping treatment in SLE. All on HCQ. Randomised to stop Aza/MMF after being stable on for 2-3 years. Relapse proliferative nephritis in 25% vs 10%. Severe SLE flare 32% vs 13%. @RheumNow #EULAR2022 OP0280 http://scientific.sparx-ip.net/archiveeular/index.cfm?c=a&searchfor=OP0280&view=1&item=2022OP0280

Reply on Twitter 1532718997778604034 Retweet on Twitter 1532718997778604034 34 Like on Twitter 1532718997778604034 66 Twitter 1532718997778604034

Retweet on Twitter Lupus Europe Retweeted

; Rare Diseases Europe @eurordis ·

30 Jun 1542568694643130370

📢 Do you want to learn more about how Clinical Practice Guidelines and Clinical Decision Support Tools are developed as well as how the patient voice can be successfully incorporated?
Do not miss this practical guide on patient involvement!
✅ Read now: http://l.eurordis.org/yySw

Reply on Twitter 1542568694643130370 Retweet on Twitter 1542568694643130370 9 Like on Twitter 1542568694643130370 13 Twitter 1542568694643130370

Retweet on Twitter Lupus Europe Retweeted

; Parodis lab @parodislab ·

2 Jul 1543300902836224000

Wonderful summary of #EULAR2022 SLE & APS abstracts by @cristianasieiro for the #eularEMEUNET @eular_org Highlights Newsletter

Check it out here: https://emeunet.eular.org/myUploadData/files/eular_2022_hl_final.pdf

#lupus #SLE #EMEUNETnews

@lauraandreoli80 @JuliusLindblom @IoannisParodis

Reply on Twitter 1543300902836224000 Retweet on Twitter 1543300902836224000 8 Like on Twitter 1543300902836224000 40 Twitter 1543300902836224000

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

2 Jul 1543244229283123202

☑️ Lot's of interest & suggestions about refractory #lupus #nephritis 👍 including checking adherence, rebiopsy & alternative treatments 💊 such as CNI (TAC, VOCLO), RTX, OBI, BEL, etc... it's also good to know that there are MANY ongoing phase 2 & 3 clinical #trials 🎯

Reply on Twitter 1543244229283123202 Retweet on Twitter 1543244229283123202 36 Like on Twitter 1543244229283123202 106 Twitter 1543244229283123202

Retweet on Twitter Lupus Europe Retweeted

; Lupus Forum @LupusForum ·

2 Jul 1543127371112484865

Our Chairman @edvital has recently hosted a #EULAR 2022 congress review, highlighting some of the key #lupus data presented at congress.

Reply on Twitter 1543127371112484865 Retweet on Twitter 1543127371112484865 5 Like on Twitter 1543127371112484865 13 Twitter 1543127371112484865

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

30 Jun 1542535730014162945

🚨 VERY IMPORTANT paper for #lupus mothers by Reynolds et al. ⬇️ There were NO significant increase in malformations or intrauterine growth restriction in children exposed to #Hydroxychloroquine in pregnancy. This is both important and reassuring 👍
https://doi.org/10.1093/rheumatology/keac372

Reply on Twitter 1542535730014162945 Retweet on Twitter 1542535730014162945 32 Like on Twitter 1542535730014162945 92 Twitter 1542535730014162945

Retweet on Twitter Lupus Europe Retweeted

; Parodis lab @parodislab ·

30 Jun 1542606921773232128

Are we moving towards a paradigm shift in the management of #lupusnephritis after the introduction of #belimumab and #voclosporin?

How far are we from implementation of combination therapy and #personalisedmedicine in #lupus nephritis? #SLE

Reply on Twitter 1542606921773232128 Retweet on Twitter 1542606921773232128 10 Like on Twitter 1542606921773232128 38 Twitter 1542606921773232128

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

29 Jun 1542151047162089473

🆒 #LUPUS #NEPHRITIS update
- ISN/RPS 2003 findings
- Suggested 2018 updates
- Typical presentations
- Autoantibodies (#membranous)
Would love some feedback 🔄 from the #nephrology colleagues 👍
#Rheumtwitter #Nephpearls

Reply on Twitter 1542151047162089473 Retweet on Twitter 1542151047162089473 95 Like on Twitter 1542151047162089473 239 Twitter 1542151047162089473

; Lupus Europe @LupusEurope ·

1 Jul 1542901263490244610

Prescribing ⬇️dose acetylsalicylic acid to pregnant women with SLE is a well known practise in many clinics. According to this study,if there's no renal involvement nor aPL,there is a ⬇️risk of severe obstetric complications.
Always discuss your treatment plan with your physician

Lupus S&M @Lupus_SM

Dr. Tani etat Shows that in their #cohort, patients with #SLE without #renal involvement & were aPL-negative seem to have a lowrisk of severe obstetric complications (pre-eclampsia), & #LDASA doesnot provide a significant advantage over these complications
https://bit.ly/3n1SxBD

Reply on Twitter 1542901263490244610 Retweet on Twitter 1542901263490244610 0 Like on Twitter 1542901263490244610 0 Twitter 1542901263490244610

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

28 Jun 1541823299658911751

🆕 For those of you who would not be FULLY CONVINCED of the benefits of physical activity and #holistic management for #FATIGUE in inflammatory #rheumatic diseases 👀⬇️ #digitalhealth https://twitter.com/TheLancetRheum/status/1541550440310943745

The Lancet Rheumatology @TheLancetRheum

NEW RESEARCH—The Lessening the Impact of Fatigue in Inflammatory Rheumatic Disease Trial (LIFT) shows that remotely delivered cognitive behavioural and personalised exercise interventions reduce #fatigue in a variety of inflammatory rheumatic diseases https://www.thelancet.com/journals/lanrhe/article/PIIS2665-9913(22)00156-4/fulltext

Reply on Twitter 1541823299658911751 Retweet on Twitter 1541823299658911751 18 Like on Twitter 1541823299658911751 56 Twitter 1541823299658911751

Retweet on Twitter Lupus Europe Retweeted

; SLEuro @SLEuroSociety ·

26 Jun 1541078337434656814

SLE is a very varied and widespread disease, so much so that it has numerous subgroups...Do you want to discover them?

To find out more, next Thursday 6 October 2022 there will be a dedicated session, don't miss it!
Consult the program: https://bit.ly/3w6EL5T
#SLEuro

Reply on Twitter 1541078337434656814 Retweet on Twitter 1541078337434656814 4 Like on Twitter 1541078337434656814 13 Twitter 1541078337434656814

; Lupus Europe @LupusEurope ·

30 Jun 1542539640913141761

Reply on Twitter 1542539640913141761 Retweet on Twitter 1542539640913141761 1 Like on Twitter 1542539640913141761 8 Twitter 1542539640913141761

Retweet on Twitter Lupus Europe Retweeted

; EJP RD - European Joint Programme on Rare Diseases @EJPRareDiseases ·

30 Jun 1542417668099145728

🧰 The @EJPRareDiseases Innovation Management Toolbox (IMT), a library of translational medicine resources on #RareDiseases, is now available.
🛠Use the IMT now: http://imt.ejprarediseases.org/
▶️Watch the video tutorial: https://www.youtube.com/watch?v=H92b6WEWFhw

Reply on Twitter 1542417668099145728 Retweet on Twitter 1542417668099145728 11 Like on Twitter 1542417668099145728 17 Twitter 1542417668099145728

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

28 Jun 1541666046012186626

In case you wonder what an #immunoproteasome is... It is a type of intra-cellular structure which degrades ubiquitin-labeled proteins found in the cytoplasm in cells exposed to oxidative stress and proinflammatory stimuli. These pathways are actively studied in systemic #Lupus 👍

Reply on Twitter 1541666046012186626 Retweet on Twitter 1541666046012186626 25 Like on Twitter 1541666046012186626 60 Twitter 1541666046012186626

; Lupus Europe @LupusEurope ·

29 Jun 1542218212829536256

All our support on #WorldSclerodermaDay. #BloomWithScleroderma

Fesca @Fscleroderma

Today is #WorldSclerodermaDay! 🌻

A day to raise awareness and show solidarity with those trying to find the light to bloom, despite living with this rare disease. We're here for you.

Let's #BloomWithScleroderma today and always.

Read more ▶️ https://tinyurl.com/3cn93hbb

Reply on Twitter 1542218212829536256 Retweet on Twitter 1542218212829536256 0 Like on Twitter 1542218212829536256 2 Twitter 1542218212829536256

Retweet on Twitter Lupus Europe Retweeted

; The Lancet Rheumatology @TheLancetRheum ·

27 Jun 1541550440310943745

Reply on Twitter 1541550440310943745 Retweet on Twitter 1541550440310943745 27 Like on Twitter 1541550440310943745 46 Twitter 1541550440310943745

Retweet on Twitter Lupus Europe Retweeted

; Dr Gurdeep Dulay @gurdeep_dulay ·

26 Jun 1541078730365440000

#Lupus nephritis treatment withdrawal

⬆️ risk relapse if treatment (AZA/MMF) withdrawn after 2-3 years

Risk factors for relapse:
⬇️c3
⬇️Hb
⬇️albumin

⬆️proteinuria
⬆️SLEDAI

Weaning of maintenance immunosuppressive therapy in lupus nephritis (WIN-Lupus): results of a multicentre randomised controlled trial

Objectives Lupus nephritis (LN) is a frequent complication of systemic lupus erythematosus (SLE). Severe (proliferative) ...

ard.bmj.com

Reply on Twitter 1541078730365440000 Retweet on Twitter 1541078730365440000 11 Like on Twitter 1541078730365440000 32 Twitter 1541078730365440000

Retweet on Twitter Lupus Europe Retweeted

; Laurent ARNAUD @Lupusreference ·

28 Jun 1541676938955300865

POSITIVE results for the part 2 of the phase 1b/2 MISSION trial of #zetomipzomib (KZR-616), an immunoproteasome inhibitor in #Lupus #nephritis: 64.7% of patients achieved an overall renal response (>=50% uPCR reduction at 6 months) and 35.2% achieved CRR.

Kezar Life Sciences Announces Positive Topline Results from the MISSION Phase 2 Trial Evaluating Zetomipzomib for the Treatment of Patients with Lupus Nephritis | Kezar Life Sciences, Inc.

11 of 17 patients (64.7%) achieved an overall renal response of 50% or greater reduction in urine protein to cre...

ir.kezarlifesciences.com

Reply on Twitter 1541676938955300865 Retweet on Twitter 1541676938955300865 16 Like on Twitter 1541676938955300865 42 Twitter 1541676938955300865

Retweet on Twitter Lupus Europe Retweeted

; George Robinson @GeorgeARobinson ·

22 Jun 1539646306330853376

Check out our new mini-review @FrontMedicine to find out how #CD8 #Tcells could play a key role in the #immunopathogenesis of #SLE in younger #juvenile-onset patients, where disease is typically more severe
👇

@Jury_Lab @UCL_RheumAYA @inespinedatorra

CD8+ T-Cells in Juvenile-Onset SLE: From Pathogenesis to Comorbidities

Diagnosis of systemic lupus erythematosus (SLE) in childhood [juvenile-onset (J) SLE], results in a more severe diseas...

doi.org

Reply on Twitter 1539646306330853376 Retweet on Twitter 1539646306330853376 6 Like on Twitter 1539646306330853376 26 Twitter 1539646306330853376

Retweet on Twitter Lupus Europe Retweeted

; Parodis lab @parodislab ·

26 Jun 1540985047628582916

Is the way paved for people with #lupus to take the driver’s seat in their disease monitoring? What’s left to be done?

https://pubmed.ncbi.nlm.nih.gov/35054036/

Review by @IoannisParodis and @Stiddyo

#openaccess

Reply on Twitter 1540985047628582916 Retweet on Twitter 1540985047628582916 8 Like on Twitter 1540985047628582916 20 Twitter 1540985047628582916

Live Facebook Feed

LUPUS EUROPE

6 days ago

Over two billion people live with over 3000 different dermatological conditions. Lupus is one of them. That is the reason we'd like your input in the Global Research on the Impact of Dermatological Diseases (GRIDD) project by International Alliance of Dermatology Patient Organizations - IADPO.

Taking part on this project is very easy! You will only need to take a short 10-15 min survey in English. The survey tests a new tool that measures the impact of your disease. Doing this will help measure and validate the very real and difficult challenges faced by dermatology patients globally.

You can find the survey and all the information about the project in this link: globalskin.org/research/about-phase-4 ... See MoreSee Less

View on Facebook

View Comments

Likes: 17
Shares: 11
Comments: 0

Comment on Facebook

LUPUS EUROPE

1 week ago

Today is #WorldSclerodermaDay! 🌻

A day that brings together scleroderma communities from around the world to raise awareness and show solidarity with those facing the challenges of this rare, invisible and disabling disease. On this special day, we want to reaffirm that we're here to support you, encourage you and help you find the light bloom.

#BloomWithScleroderma today and always.

Read more about our campaign 👉
fesca-scleroderma.eu/wsd2022/?utm_source=facebook&utm_medium=facebook-feed&utm_campaign=organic-c... ... See MoreSee Less

View on Facebook

View Comments

Likes: 9
Shares: 0
Comments: 0

Comment on Facebook

LUPUS EUROPE

2 weeks ago

LEAF is an online tool developed by Dr. Laurent Arnaud whose objective is to assess fatigue and give some personalised advice on how we could manage it.

Fatigue could be affected by stress, low sleep quality or pain. The LEAF questionnaire will assess your pain based on your responses regarding depression, pain, stress, anxiety and quality of sleep. Once the data is analyzed, LEAF will give you some hints that could help improve fatigue.

The questionnaire is in English, French and Spanish and the answers will help understand more about fatigue! You can do LEAF even if you don’t have an autoimmune disease.

iamfatigued.limequery.org/584745?lang=en ... See MoreSee Less

View on Facebook

View Comments

Likes: 51
Shares: 14
Comments: 2

Comment on Facebook

This looks really interesting, thanks. Fatigue is probably the worst aspect of having Lupus. Anything that helps manage that has to be a bonus

Such an endeavour to struggle !

LUPUS EUROPE

2 weeks ago

The 33rd Lupus Europe Annual Convention was held in person and online this year! After a General Assembly this past Sunday and a Board Meeting yesterday we are very happy to present you with the new Board of Directors of Lupus Europe!

We would like to take this opportunity to also offer our sincere congratulations to our newest member of the Board, elected on Sunday! A warm welcome to new Board Member, Dalila Tremarias! ... See MoreSee Less

View on Facebook