Tuesday, 8 May 2018

Important information for patients taking hydroxychloroquine

If you are an APS patient who regularly takes hydroxychloroquine (trade names Plaquenil and Quinoric in the UK), please be aware that the Royal College of Ophthalmologists (RCO) have updated their guidelines regarding eye testing. 

This is because recent studies have shown that hydroxychloroquine retinopathy is more common than previously reported – around 7 in every 100 patients - especially with long-term use over five years or heavy doses. The risk is much higher in patients who have been taking the drug for 20 years or more: in these patients, between 20-50 out of 100 will develop retinopathy. 

This type of retinopathy, also known as ‘bull’s eye maculopathy’, damages the retina and symptoms can include partial colour-blindness, loss of fine detail, blurring or distortion, night blindness and permanent central vision loss. 

Therefore, the RCO now recommends that all patients who take hydroxychloroquine for longer than five years should be referred by their GP, or APS specialist, for a yearly test at a hospital eye clinic. 

The screening will be comprehensive and your pupils will be dilated with eye drops – for the technical information involved, please read the RCO’s guidelines: 

https://www.rcophth.ac.uk/wp-content/uploads/2018/03/Hydroxychloroquine-and-Chloroquine-Retinopathy-Screening-Guideline-and-Recommendations.pdf

There is also a very useful leaflet produced by the Macular Society that you may find helpful: 

https://www.macularsociety.org/sites/default/files/resource/Hydroxychloroquine%20-%20access_0.pdf

Sunday, 29 April 2018

A new awarding winning iBook about antiphospholipid syndrome is now available to download for free.

The product of a collaborative project between the Hospital for Special Surgery, New York, NY, USA and Nancy-Lorraine University, Nancy, France. The authors - Laurent Phialy, Stephane Zuily and Doruk Erkan - developed this digital book with the main aim of helping medical students better understand the spectrum of antiphospholipid antibody (aPL)-related clinical problems, and to help educate them in the diagnosis and management of APS.

However, the APS iBook is proving popular with the medical community and patients alike, with one reviewer stating: "a must read for patients and doctors. It's written in a clear and understandable and the international cooperation gives us all hope".

The APS iBook has won two awards: Best iBook of the Year, Education Category, Science Subcategory and One of the Three Best iBooks of the Year, All Categories.

Definitely worth a read! Please click here to download your copy.

Note: This iBook is free to download with iBooks on your Mac or iOS device (multi-touch books can be read with iBooks on your Mac or iOS device). iBooks on your Mac requires OS X 10.9 or later.

Friday, 9 February 2018

APS Support UK and LUPUS UK are jointly funding research into APS at University College London

Thanks to the efforts of our fundraising committee, the Louise Gergel Fellowship, and matching funding from LUPUS UK the charity has been able to support a year-long APS research project at University College London (UCL) carried out by Dr Vera Ripoll-Nunez.
 
Dr Ripoll-Nunez started her career in Colombia working at the Institute of Immunology, focussing on malaria which is the leading cause of death in Colombia. During this time, she developed a passion to forge a career in immunology and worked in Australia and the UK.
 
She has been working at UCL since 2011, and played a key role in the 2010-2016 research programme funded by Arthritis Research UK that looked into the causes of APS.
 
Her new project builds on this earlier research and will look at a new biological target in the treatment of APS: an important process called autophagy in which the body’s cells renew themselves.
 
Dr Ripoll-Nunez is aiming to prove that a malfunction in autophagy leads the immune system to attack the body itself causing symptoms of APS, and she has already obtained promising results indicating that APS-derived antibodies act to reduce autophagy.
 
She says: “With the Louise Gergel Fellowship, I propose to build on the exciting results generated from my previous research at UCL”.
 
Autophagy is a hot topic in scientific research at the moment, and the 2016 Nobel Prize in Medicine was awarded for work on the subject. 
 
One of the available drugs that act on autophagy, sirolimus,has been the subject of a study looking at kidney transplants in patients with APS and the UCL research team believe that pursuing the investigation of autophagy in APS could potentially help patients in the future.