Thank you to everyone who supported Lupus Brighton and Hove by putting your green tokens in the Community Matters box at Waitrose, Western Road, Brighton.

We had a fantastic result, receiving just over a third of this month’s Waitrose Coummunity Matters fund, which is very gratefully received and will go towards paying for things like our website hosting, administration costs and group events.

We’d particularly like to thank Terri Gibson for nominating our group for the Waitrose Community Matters scheme and without whom we wouldn’t have received this very generous donation.  

Following our Christmas meal on the 4th December, Lupus Brighton and Hove takes a winter break to give us all a chance to recharge our batteries, which we think is important (as I’m sure you’ll appreciate) as we all have Lupus.

Our next Lupus Brighton and Hove coffee and chat will take place in 2016 on the 18th February. We look forward to seeing you there at our new venue- Cafe Arcadia on our new day- Thursday.

If you need any support from the group over the Christmas break please contact us by email and we’ll do our best to help. In the meantime we wish you all a very Happy Christmas and a healthy New Year!

We had another really enjoyable meeting this month. Eleven of us went along to Cafe Arcadia for the last coffee and chat of 2015. Celim, the manager, made us all feel very welcome again.

We were delighted to welcome another new member to our group as well welcoming back a couple of our longer-term members, who’d been unable to attend for a few months.

Date cards for 2016 were given out to everyone who came. 

We look forward to meeting there again next year, on the third Thursday in February.

We continued to try out our new evening meet up group for people with lupus who would like to come for support, but are unable to get to the morning Coffee and Chat because they work during the day. 

We had our second evening meeting on Tuesday, 17th November 2015, which went well (despite terrible weather) and allowed a member who had been unable to attend our Friday daytime coffee and chat due to work, to meet up. We’re planning to hold another at 6.30pm at The Earth and Stars pub in February 2016, after our Christmas break. 

Many people, but not all, with Lupus also have a condition called Antiphospholipid (APS) or Hughes syndrome in which the blood clots more easily and can therefore cause vascular thromboses. One of the main treatments is to take daily Warfarin (Coumadin) tablets.

How Warfarin works

First, you should know that your liver uses vitamin K to make blood clotting proteins. In doing so, vitamin K plays a role in your body’s natural clotting process. Vitamin K is contained largely in leafy green vegetables but also in other foods in varying amounts. Warfarin destroys Vitamin K, thus reducing the rate at which the blood clots ie the coagulation rate. So, eating a lot of foods containing Vitamin K, clotting time is increased. The aim of anticoagulation is to slow down clotting time but not to cut out those healthy foods. It is really a balancing act to get the right dose of Warfarin.

Monitoring the coagulation rate

Scientists have come up with an internationally accepted way of measuring the rate at which the blood clots. This is called the INR (the international normalised ratio) and for people with lupus this measurement is usually set at around 3 although some consultants will argue that it should be higher, 3-4. This will be monitored at a community or hospital anticoagulation clinic where a sample of blood can be taken from a finger prick (capillary blood) or from a vein (venous blood).

It is, however, becoming more common for people to have their own machine and carry out self monitoring thus visiting the clinic less frequently. This means that one can go away for longer periods, keep a check on the INR and have peace of mind.

False high INR values

It is useful to note that Antiphospholipid antibodies and Lupus antibodies may cause false-high INR values and so clinics may wish to compare the capillary samples with a venous samples, which will be more accurate.

Getting used to being on Warfarin

It can be quite alarming initially to be told that you have to take Warfarin but like all the other hassles we have to go through with Lupus, in time, one gets used to it and accepts that it is preventing possible problems in the future.

Judith Orford
6.11.2015