Scientists at Bristol University last week announced an important breakthrough in the fight against autoimmune diseases like lupus by revealing how to stop cells attacking healthy tissue in autoimmune diseases like lupus SLE.

Scientists were able to selectively target the cells that cause autoimmune disease by dampening down their aggression against the body’s own tissues while converting them into cells capable of protecting against disease.

This sort of therapy has already been used in treating people with severe allergies e.g. someone who is allergic to peanuts is gradually exposed to more and more of this specific allergen in a very controlled way over a long period of time. Gradually their own immune system’s response dampens. This means that over time their antibodies no longer react to peanuts as a threat, which means that the person no longer risks going into anaphylactic shock when they eat peanuts.

This same theory may now be applied to autoimmune diseases because scientists at Bristol University have studied how the immune cells are “turned off” by this kind of therapy.

By specifically targeting the cells at fault, this immunotherapeutic approach avoids the need for powerful immune suppressive drugs like steroids and their associated side effects.

Professor David Wraith, who led the research, said: “Insight into the molecular basis of antigen-specific immunotherapy opens up exciting new opportunities to enhance the selectivity of the approach while providing valuable markers with which to measure effective treatment. These findings have important implications for the many patients suffering from autoimmune conditions that are currently difficult to treat.”

To read more follow this link to the full news article and full published paper.

For those of you who have found meditation a helpful way to manage your condition. Here are the September term dates for the lunchtime meditations at the Bodhisattva Kadampa Buddhist Meditation Centre, Brighton.

On a lovely warm sunny day, we had another successful coffee and chat with two new members joining our group. One had been able to find us thanks to our Facebook page. Big thank you goes to Flo who has been working hard over the summer to keep it updated for us. Please follow the link at the bottom of this page if you haven’t seen it yet.

Although lupus is said to be a rare condition, for the second time this year within our own group, a member has found a fellow lupus patient who lives just a couple of doors away from them. We hope they’ll be able to offer each other some understanding and support and that the group has helped them to to feel less isolated. It just goes to show how many people there may be with lupus right now who are living not that far away from you!

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.

If you need advice between your Rheumatologist appointments, remember that most hospital’s have a Rheumatology nurse. These are specialist nurses who are available to give advice most days by telephone, for subjects as diverse as: pain management, drug side effects and test results. This link to the Arthritis Research website explains what the Rheumatology Nurse does.

If you haven’t come across the Rheumatology Specialist nurse before, you may not be aware of how helpful and reassuring they can be. Most have a telephone service that you can call and leave a message on and they will then usually get back to you within 24 hours. St Thomas’ Lupus trust also have an online nurse who can advise you by email, although this can take a few days for a reply.

If the nurses aren’t able to answer your query themselves, they’ll check with a consultant first and get back to you.

Rheumatology Nurse Specialist contact numbers:

Royal Sussex County Hospital 01273 696955 X4354

St Thomas’ Lupus Trust online nurse Angie Barwick answers questions by email twice a week (everyone)

St Thomas’ Specialist Nurse 020 7188 3549 (for St Thomas’ patients)

We’re delighted to announce that our Facebook page is now up and running, so if you use Facebook please follow us to get the latest on what we’ve been up to, see new information on lupus and ideas for managing it. You can leave your own comments and questions. Also, if you happened to be logged on at the same time as each other you can also use it to have a live chat. So please make the most of and enjoy this new resource. Click on the Facebook links at the bottom of each of our website pages or this logo the left and it’ll take you straight there!