We all arrived at the Courtyard Restaurant last Friday and were all very surprised and sad to find that it has closed down. We quickly relocated and were lucky enough to be able to get a large table in nearby, Carluccio’s. It was a little noisy, but did offer coffees, teas and snacks. After leaving a note on the menu board outside The Courtyard we hope everyone was able to find us there (apologies if you didn’t!)
Despite the last minute change of venue we had a great meeting with ten of us there in the end.
Kelly had bought along a selection of set menus for three different restaurants (Piccolo’s, CÔTE and Bill’s) for our Christmas meal. After some discussion we voted and CÔTE came out as favourite.
“Tender points fibromyalgia svg” by Sav vas – Own work
Fibromyalgia (FM) is a medical condition characterised by chronic widespread pain and a heightened and painful response to pressure. Symptoms other than pain may occur, leading to the use of the term fibromyalgia syndrome (FMS). Other symptoms include fatigue, sleep disturbance and joint stiffness. Some people also report difficulty with swallowing, bowel and bladder abnormalities, numbness and tingling and cognitive problems, Fibromyalgia is frequently associated with psychiatric conditions such as depression and anxiety. Not all people with fibromyalgia experience all associated symptoms.
This page from this Molly’s fund website (our friends in Portland, Oregon) gives lots of helpful information about Fibromyalgia and information about its links to Lupus.
After a short formal meeting at the Jubilee library, we had a great coffee and chat this month at The Courtyard Restaurant, Brighton. Seven of us came along to catch up with each others news. It was a very relaxing and enjoyable morning. Amongst many other things we discussed having the flu virus vaccine.
Melanie Rees held a Bottle Top Marathon on Thursday 20th August at the Green Centre, which took place from 7am until 7pm when she and the Green Centre volunteer team sorted bottle tops for an incredible 12 hours! They sorted 72bags- that’s an amazing 395.5kgs of bottle tops!!! The funds raised from recycling the bottle tops will be donated to Lupus Brighton and Hove and LupusUK. Thank you to LBH members Terri and Serena for going along to support the Bottle Top Marathon and to Melanie and the Green centre volunteers for all their hard work. The Crowdfunding sponsorship page for the event is now closed, but you can still support Melanie and her wonderful team by donating on the Green Centre’s website
If you’ve been put on steroids in the form of Prednisolone tablets, you should have been given one of these blue steroid cards to carry. This is because if you’ve been on steroids for 3 weeks or more it’s dangerous to suddenly stop taking them. These blue steroid treatment warning cards can be got from your prescriber or your dispensing chemist.
The adrenal glands which produce your body’s own steroids shuts down when taking a dose of 5mg or more of Prednisolone and they need time to gradually start working again. This means that when stopping a course of steroids after taking them for a long time, you will reduce the dose slowly over a period of months.
If you are currently taking corticosteroids, or have taken them in the last year, it’s also important to tell everyone involved in prescribing you medicines and giving you medical treatment. This includes your doctor, dentist, nurse and pharmacist. You must make sure that they all know about your corticosteroid treatment.
It’s also important (when on taking steroids) to keep away from people who have chicken pox or shingles, if you have never had these illnesses, they could make you very ill. If you do come into contact with someone who has them tell your doctor or nurse straight away.
Many of with lupus are on at least one type of Prescription medication and often these are long-term if not for life. With each item on a prescription now costing a huge £8.20, for some people a Prescription Pre-Payment Certificate could help with these costs.
They are available as 3 month or 12 month certificates. A 3 month costs-£29.10 and an year costs £104. Each allow you to get as many items as you need within that period. So if you have e.g. 4 prescription items every month this could save you £289.60 a year. You can get one over the phone 0300 330 1341 or at their website-https://apps.nhsbsa.nhs.uk/ppcwebsales/patient.do
If you are pregnant, on kidney dialysis or have had cancer you can get an exemption certificate. If you are over 60 prescriptions are free. Certain types of health condition also qualify for free prescriptions. However lupus itself is not one, but if it means you meet this criterion-
- a continuing physical disability which means the person cannot go out without the help of another person. Temporary disabilities do not count even if they last for several months
then you can apply.
It does seem very unfair that an incurable condition like lupus does not qualify automatically for free prescriptions whilst other conditions do. If you don’t agree with this unfairness then please follow this link to The Prescription Charges Coalition and sign their petition.
We began this months meeting by holding our group’s AGM at the Jubilee library. Thank you to all those who came along.
This was followed at 11am by a really lovely coffee and chat at the Courtyard restaurant. We had twelve people come along and we were very happy to welcome two new members there. We discussed diet and managing Lupus with and without medication. It was a very successful morning which we hope was helpful for all those who came along.
For some people with Lupus SLE, a sad part of the illness can be difficulty having children. Some people discover that they have what’s called Antiphospholipid syndrome (also known as Hughes Syndrome). This is an autoimmune condition that can cause blood clots in arteries and veins (thrombosis) as well as pregnancy-related complications such as miscarriage, stillbirth, preterm delivery, and severe preeclampsia.
Treatments such as Heparin, which can be given during pregnancy to thin the blood, have helped to produce many successful births to Lupus patients at the Lupus Pregnancy clinics at The Louise Coote Lupus department at St Thomas’ Hospital London, so if you have lupus SLE and are thinking of trying to conceive, it’s a good idea to ask to your GP to test you for antiphospholipid syndrome.
For those who don’t have children, either through choice or otherwise the Gateway Women is a very positive support network that organises events and groups and also offers an online forum to women who are childless. If you follow this link to their UK Meetups and register you can be put in touch with like-minded women who meet once a month locally.
The Latilla Building at RSCH-©Tony Mould:My Brighton and Hove
Most of us are probably very familiar with the Rheumatology department in the Latilla building at the Royal Sussex County Hospital and have spent many an hour waiting for our appointments in what everyone would probably agree is a very dilapidated building that has definitely seen better days. So it’s fantastic news that the department and the wonderful staff that work there are moving and getting a new home. If you’ve driven or walked past recently you may have seen cranes and a lot of construction going on beside the old building. The first stage of the new development is a modular building which is being installed in front of the East Wing of the Barry building. It consists of 6 levels and will temporarily house the Rheumatology department from Autumn 2015. This will be it’s home until the second phase of the building work is done, which is due to be done in 2019, when the modules will be removed again.
After a formal meeting (which was held at the Jubilee library) we had a very successful support group this month. Seven members attended the meeting and we were able to share our experiences and discuss the various medications and were taking. We also caught up with each others news over the past month. It was a great morning and lovely to be able to get together and to see old and new members alike.