Wednesday, 4 September 2019

Medicines Discovery Catapult

We have published a blog about APS after being approached by the government initiative, Medicines Discovery Catapult.

The idea is to promote antiphospholipid syndrome (APS) to researchers and scientists in the pharmaceutical and biotech industries.

It has given us the opportunity to alert the drug industry to APS and how important new medication is for patients.

Wednesday, 3 July 2019

Anticoagulant Clexane batches are recalled by MHRA

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.

To check if you medication is affected, please visit the B & S Healthcare website and download the information pack.  

Click to read the full MHRA bulletin.

Thursday, 27 June 2019

Direct oral anticoagulants and APS

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. 

Due to these issues with warfarin a new generation of blood-thinning drugs has been developed. These drugs are called Direct Oral Anticoagulants or DOACs and examples include rivaroxaban, apixaban and dabigatran. Their effect on blood thinning is more predictable and easier to control, so patients on these drugs do not require regular INR tests. It has also been suggested that these drugs have fewer interactions with other drugs than warfarin does.

The DOACs have been used to prevent clots in a number of other medical conditions and clinical trials have shown that they work as well as warfarin in those conditions. For this reason, some patients with APS have had their treatment changed from warfarin to DOACs.

The UK Medicines and Healthcare products Regulatory Agency (MHRA) has recently  issued advice concerning use of DOACs in patients with APS. This advice may result in warfarin being preferred to DOACs for patients with APS until more evidence is available.

A number of medical specialist and patient groups in the UK are currently discussing this advice and we will be posting the outcome of those discussions when it is available. 

In the meantime APS Support UK's advice to patients is as follows:

- If you are taking warfarin, carry on with your treatment as normal. 

- If you are already taking a DOAC do not stop taking it until you have started an  alternative blood-thinning agent such as warfarin. Remember that the highest risk of having a clot would be to take no blood-thinning agent at all. Your GP should not stop your DOAC without discussing it with your haematologist and local anticoagulation clinic first. 

- If you are changed from a DOAC to warfarin you will need to start having regular INR blood tests and   may need to take heparin injections until the warfarin starts to work and you reach your INR target range.

   For more information, please visit the MHRA's website:

Monday, 29 April 2019

16th International APS Congress - Patients' Conference 20th September 2019

The 16th APS International Congress is being held in the UK - at Manchester Central from 17th-20th 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 20th 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 for discussion and questions; in particular, scientists would like to learn from the patients about unmet needs so they can prioritise future APS research.

To book your place please visit the APS Congress Patient Registration page

Monday, 25 February 2019

APS Support UK Research Fund

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 international meetings to present their own research. The maximum award will be £1000 and we will require a letter from the applicant’s supervisor confirming that they are in training, and proof that their research has been accepted for presentation
APS Support UK is willing to work collaboratively with other charities where research interests overlap.

Please read the research section on our website for more information.

Tuesday, 16 October 2018

World Thrombosis Day 2018

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.

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:

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