APS Support UK News

The UK Medicines and Healthcare products Regulatory Agency (MHRA) advises patients to check if they have certain batches of the prescription-only medicine Clexane as they are being recalled. As a precautionary measure, patients taking certain types of the prescription-only medicine Clexane for blood clots are asked to check to see if they have products from batches of medicines which are being recalled. If patients have any of these affected products, they should continue taking their medicines and contact their GP practice to arrange a new prescription. Once they have a new prescription, patients should return the affected batches to their pharmacist.  Patients can check their medicines by looking for the affected batch numbers on B & S Healthcare labelled packs . The affected medicines are in the original Italian packaging with the UK manufacturer’s, B & S Healthcare , label. This recall relates only to B & S Healthcare labelled products.

The UK Medicines and Healthcare products Regulatory Agency (MHRA) has recently issued advice concerning use of direct oral anticoagulants (DOACs) in patients with APS. This advice may result in warfarin being preferred to DOACs for patients with APS until more evidence is available.   The chief aim of drug treatment in patients with APS is to prevent blood clots or strokes.   The main drug used for many years has been warfarin, which thins the blood. There is good evidence from clinical trials that warfarin is effective in preventing clots in patients with APS. There are some disadvantages to using warfarin. Patients have to have regular blood tests (called INR tests ) to make sure that the level of thinning of the blood is at just the right level – if the dose of warfarin is too high there is an increased risk of bleeding. Furthermore, warfarin interacts with a number of other medications so that when those drugs are being taken the INR tests may need to be done more frequently

The 16 th APS International Congress is being held in the UK - at Manchester Central from 17 th -20 th September 2019. This important global APS Congress is held every three years, and attracts around 400 researchers and specialists who discuss the recent advances and future directions in the field of APS. On Friday 20 th September, there is a unique opportunity for patients to attend an all-day event with a Patient Education Session in the morning and Joint Patient Session in the afternoon, both hosted by world-renowned APS experts. The cost is £42 per ticket and this includes: ·          Access to both patient congress sessions  ·          Access to the exhibition and posters ·          Congress materials ·          Tea, coffee breaks and lunch ·          Complimentary Wi-Fi Specialists will talk on a number of APS topics in the morning based on an agenda set by patients. In the afternoon, there will be patient speakers and the opportunity fo

We are now offering small grants of up to £5,000 for research projects specifically concentrating on antiphospholipid syndrome.   APS Support UK, is a grant making charity recognised by the National Institute for Health Research (NIHR) as a non-commercial partner funding research of clear value to the NHS as a result of open competition with high quality peer review.     Applications will be considered for: Smaller pilot studies which will lead to applications to major funders for large-scale research trials Enabling grants for basic science support that would enable larger projects by providing essential data for large grant applications Support for organising medical meetings that would facilitate improvements to the understanding of the causes, prevention and treatment of APS, and its research (NB maximum grant £1000) Travel awards to enable scientists or clinicians in training to attend national or

Four APS organisations joined forces to raise awareness of antiphospholipid syndrome for World Thrombosis Day 13th October 2018. Together with APS-ACTION, the APS Foundation of America and the APS Foundation of Australia we ran a collaborative campaign to increase awareness of APS in the thrombosis community and beyond. To read more about the APS campaign, please read our World Thrombosis Day leaflet. During the campaign we asked that patients write in with questions that would be answered by members of APS-ACTION. You can read this patient questions and answers here . Thank you so much to everyone who contributed to the # WTDay18 APS Support Campaign.

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 specialis