We had another very successful morning. Twelve of us got together for our coffee and chat, following our Annual General Meeting. We were very pleased to welcome another new member to our group. There was lots of lively debate as we discussed amongst other things, “If we had £1000 for the group how would you like to see it spent?” Suggestions included creative workshops, breath workshops, massages, spa days and days out together.

Thank you also to Serena’s sister, who very kindly made a donation to our group for World Lupus Day.

The Hygiene Hypothesis isn’t a new theory it was first put forward in the UK in 1989 by an epidemiologist, Dr Strachan.

The theory looks at the link between the rise in allergies, like hay fever and increased cleanliness. Although the theory was popular a causal link has never been definitively proved.

Move recently there has been renewed interest in the theory and links are being explored between the rise in autoimmune diseases, such as diabetes type 1, MS, Lupus SLE, ulcerative colitis and Crohn’s disease and excessive levels of hygiene. By understanding better how the immune system works we can begin to see how the theory may have some truth behind it.

A recent discovery has shown that a particular group of T-cells, police the immune system, by regulating unwanted immune responses, such as allergies and autoimmune conditions. These T-cells are called Tregs.

A possible theory is that Tregs set the threshold for our body’s autoimmune response so that they react strongly to dangerous infectious diseases to protect us, but ignore harmless day to day things. In order to do this, it is believed that they need exposure to microbial information sources like dirt and germs. Without this information it is possible they set the bar to low and cause an overreaction in the immune system to things such as pollen causing hay fever or even the body’s own organs causing conditions like lupus SLE.

Interestingly, the biggest concentration a staggering 90%, of our immune cells are found in our guts and we are only just beginning to learn how important our gut microbes are.

If you are interested in reading more about this subject you can follow this link to Barbara Fazekas de St Groth (Professor of Immunology at Centenary Institute’s article-How Clean is Too Clean? or alternatively if you like to hear more about it you can listen to Professor Graham Rook (from UCL) discussing it on Radio 4’s You and Yours programme  on 29/5/14 (listen to it from 20 minutes in to hear it).

Hydroxychloroquine (brand name Plaquenil) is commonly used in the treatment of lupus SLE and Rheumatoid Arthritis. Originally an anti-malarial drug, it was found to be very effective in the treatment of Lupus SLE. It is a Disease Modifying Anti-Rheumatic Drug (DMARD). It works by dampening the underlying disease process and reducing inflammation, rather than just treating the symptoms. It can take 12 weeks or longer to notice any benefit. Risks and side effects are uncommon with this drug, but very rarely it may cause damage to the retina of the eye. There is however evidence that this risk can be almost completely eliminated if the doctor adjusts the dose carefully.

Before starting this medication you may have a blood test to check your liver and kidneys are working properly.

It is also advisable to have an eye check before you start the medication and then at least once a year afterwards. An optician can carry out this check for you.

Arthritis Research UK do a very helpful leaflet about Hydroxychloroquine, click on this logo to see it.

If you have any concerns about any medication that you are taking then please talk to your GP.

Dr Sandra Sacre and her PHD student Ryan, have very kindly agreed to come along to September’s Coffee and Chat and tell us all about their research into Lupus and other autoimmune diseases. You may have been asked to give some blood to help with this project when you’ve been along to your routine rheumatology appointment at the Royal Sussex hospital.

Dr Sacre is a Senior Lecturer in Molecular Cell Biology and the Director of the Brighton Musculoskeletal Research Centre. She and her team have been studying innate immune receptors in chronic inflammatory diseases like lupus SLE and the role they play in regulating our immune responses. They are studying these receptors and how they contribute to inflammatory diseases to try to improve diagnostic tools so that diseases like lupus SLE can be more easily diagnosed, as well as improving therapeutic treatments. To learn more follow these links to Brighton Musculoskeletal Research Centre and Brighton and Sussex Medical School.

This should be really a really interesting talk and we’re really looking forward hearing all about this ground breaking work.

As those of us with lupus know only too well, we need to be very careful in strong sunlight. Now summer is well and truly here, I’m sure we’ve all been applying our sun lotion again. Many of us use SPF 50, but what does SPF actually mean?

SPF stands for Sun Protection Factor. The SPF is a measure of how long the sun lotion remains effective, contrary to popular belief it doesn’t mean you can lie in the sun indefinitely! The effectiveness is measured by how long it takes you to burn without sun lotion. This obviously varies from person to person, but for example if it takes 10 minutes before you burn without it, it will take you 500 minutes to burn with SPF50 on.

Contrary to common advice that sun lotions should be reapplied every couple of hours, research has shown that the best protection is achieved by applying 15-30 minutes before sun exposure, then reapplied once after 15 minutes after exposure (as it sinks into your skin). Then only needs to be reapplied after swimming, sweating, wiping or rubbing.

So now you know!

If you’re very sun sensitive you may also be interested in a range of sun protective clothing by British company- Sunsibility. The fabric it’s made from offers SPF 50 protection. Follow this link if you wish to see their range- Sunsibility.