We had another very good coffee and chat with a great turnout. We were very pleased to welcome Diane to our group who was visiting Brighton from Liverpool and who wanted to meet us all. It was really interesting to hear her experience of treatment and support in a different part of the country and we hope she found our group warm and welcoming. We’ve agreed to stay in touch by email and look forward to seeing her again when she’s next visiting Brighton. Thank you also to Brenda, who very kindly made a donation to our group for World Lupus Day.

We had a great day at the Green Centre on Saturday the 10th May. A big thank you to everyone who brought along their aluminium cans and foil for recycling and to those who helped sort them at the event on Saturday. We managed to raise a total of £15 between us. Thank you to Mel too for organising this for the group and letting us use the Green Centre for our event.

Although it rained which meant we changed this day to an indoor event, we still had fun and the sun broke through by the afternoon. We were also very happy to welcome many of our newer members to our World Lupus day event.

There was a great spread of food, a chance to browse the group’s library of books about lupus and we also had a very interesting discussion about what worked for each of us when managing this condition.

Mel had a little quiz for us, testing us on our recycling knowledge and I think we all came away knowing a little bit more about recycling.

Thanks also goes to everyone who donated prizes to our tombola, which raised a further £21.60 on the day and provided a little bit of light entertainment!

In addition to the £36.60 raised on the day, we made a further £27 in donations to the group following this event. We’d like to thank Brenda for her donation to the group and Serena who despite being unable to attend due to her Open House worked very hard to raise money for the group.

A big thank you to Terri who came along early and helped Mel and I set up the room and also stayed to help tidy up at the end.

It was also great to have the chance to meet Oswalde, who has been so dedicated over the last few months in helping to sort the many thousands of collected plastic bottle tops. This has raised money for both Lupus Brighton and Hove and LupusUK.

Many lupus patients are prescribed steroids, as tablets (Prednisolone) which we need to take every day to keep symptoms managed. Alongside these many of us are also given PPIs or proton pump inhibitors to protect the stomach by reducing the amount of acid produced. These are often omeprazole, lansoprazole or other PPIs. Recently there has been some concern that PPIs may be too readily prescribed and that coming off them can be difficult. This is because you can get rebound acid when you stop taking them, so symptoms of heartburn can return.

These are very effective and useful drugs for those who need to take them, however there may be some disadvantages to taking them long term as they can interfere with the way minerals and vitamins such as B12 are absorbed by the body.

“In the beginning I had extreme gastric pain connected to my lupus and ended up trying three different PPIs before I found one that thankfully worked, I was also on a very high dose. However after taking them for many months I did come off the pantoperazole I was taking by reducing the dose very gradually. My symptoms did get worse each time I dropped the dose, but I persisted and I was able to reduce the dose and finally stop taking it. I now manage my symptoms by taking a very low dose of ranitidine.”- Lupus SLE patient.

To read more about taking PPIs and the concerns about over prescribing them you can follow this link to Inside Health, which has a report on it in January this year.

If you do want to reduce or stop taking PPIs, then please discuss this with your doctor first.

One last reminder for the event that we’re planning at the Green centre on World Lupus Day, Saturday 10th May 2014 12-4pm. We’ll be providing light refreshments, have the group’s mini library there, you’ll also be able to learn about recycling. Please remember to bring the aluminium that you’ve been collecting for the group too. This should be a fun event and a chance to relax and enjoy ourselves.

NB. Due to the legal complexities of running a small community group raffle, we are unable to hold a raffle on Saturday, 10th May at the Green Centre.

Despite the rain we had another successful coffee and chat in April, with eight of us coming along to share ideas, offer each other support and generally catch up.

For those of us diagnosed with lupus (as discussed in December’s talk by professor Davies on the brain), we may feel depressed and anxious at times. So you may be interested to know about a technique called CBT or Cognitive Behavioural Therapy. This is a form of talking therapy that involves changing the way we think about our problems. It has been shown to be helpful when coping with the emotional side of long term health conditions. The NHS choices website now have a series of audio guides called Moodzone which offer advice on how to approach common problems with mental well being, such as depression, anxiety and sleeplessness amongst others.

CBT is usually done on a one to one basis and if you feel you could benefit from this type of talking therapy then speak to your GP as it is available on the NHS as well as privately.

Thank you to one of our members for very kindly giving us these links to a couple of TED talks by Lissa Rankin MD, which she thought the group would be interested in. This is a bit about her:

“Lissa Rankin, MD is an OB/GYN physician, author, keynote speaker, consultant to health care visionaries, professional artist, and founder of the women’s health and wellness community OwningPink.com. Discouraged by the broken, patriarchal health care system, she left her medical practice in 2007 only to realize that you can quit your job, but you can’t quit your calling. This epiphany launched her on a journey of discovery that led her to become a leader in the field of mind/body medicine.

She teaches both patients and health care professionals how to make the body ripe for miracles by healing the mind and being healthy in all aspects of life, not just by promoting healthy behaviors like good nutrition, exercise, and adequate sleep, but by encouraging health and authenticity in relationships, work, creative expression, spirituality, sexuality, finances, and living environment. She is leading a revolution to feminize how health care is received and delivered by encouraging collaboration, fostering self-healing, reconnecting health care and spirituality, empowering patients to tap into the mind’s power to heal the body, and encouraging women not to settle for being merely well, but to strive for living vital, joyful, authentic lives full of “mojo.””

Follow these links to hear her talks:

‘The shocking truth about your health’

“Is there scientific proof we can heal ourselves?’ 

You may have heard in the press lately some discussion around prescription charges, as they are set to rise to a breathtaking £8.05 per item from 1st April (going up to £8.20 next year). Many of us regularly take several medicines due to our lupus and related conditions. As we are all aware lupus (despite being a lifelong chronic condition) does not automatically qualify for free prescriptions, as other conditions like thyroid problems do. To put this in perspective I have 5 medicines on prescription that I take every day indefinitely and this will now cost me a whopping £483 a year (unless I buy a £104/year NHS prepayment card  upfront which not everyone can afford to do).

St Thomas Lupus Trust is part of the Prescription Charges Coalition Group They are actively fighting to get everyone with long term health conditions to qualify for free prescriptions. Please follow this link to a petition on the British Heart Foundation website asking the government to end unfair prescription charging for those with long term conditions and add your name to it.

You can listen to the Radio 4 “Inside Health 12/3/14” piece on iPlayer to hear a report on this latest increase (it’s the second item on the programme -about 11 minutes in ).

You can  click here for a link to Paying the Price, a report by the Prescription Charges Coalition and it’s where you can  e-mail your MP regarding prescription charges too. It’s extremely fast and does all the work for you, all you need is to type is your name and address.

With spring starting to feel like its finally sprung, we had another great coffee and chat this month. Despite a few of us being away due to other previous commitments (which meant that there was no formal meeting this month), five of the group still met and had an enjoyable morning together.

On  Saturday May 10th 2014 from 12pm-4pm, we will be holding an event at the Green centre in Brighton.

This will be a fundraising day for Lupus Brighton and Hove, that will be open to friends and family, but not to the general public.

We plan to have food and refreshments there, as well as, information about recycling. There’ll be a raffle and a chance to see our new collection of library books and to borrow any that interest you.

We’d also like you to keep collecting all your aluminum cans for it too, as there will be a weigh in on the day to see how much we’ve been able to collect.

This Should be a great event. It’ll be a chance to meet up, have fun, raise awareness about lupus and also raise some funds for our group. So please save the date in your diaries- we look forward to seeing you all there!