News Blog

Disappointing Drug Trial Result

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@LUPUSUK
Janssen Pharmaceuticals has announced that they are discontinuing Phase 3 clinical trials of ustekinumab in #lupus. Ustekinumab is currently used to treat some autoimmune diseases. Unfortunately, trials have found it ineffective in the treatment of SLE. jnj.com/janssen-announ

Coronavirus Latest 23/06/20

Please go to https://www.lupusuk.org.uk/coronavirus/ for updated information from Lupus UK.

Lupus UK Team

Dear @BBCNews,
Can we talk about this headline?
Coronavirus: Malaria drug hydroxychloroquine ‘does not save lives’ https://t.co/WfvKSjcG6t

Whilst the RECOVERY trial has shown it is not effective against #COVID19, it is still a very important and effective treatment for #lupus.

— LUPUSUK (@LUPUSUK) June 8, 2020

Hydroxychloroquine Update from Head Office 08/06/2020

Hi everyone,

You may have seen over the weekend that the large UK clinical trial, RECOVERY, published results – https://www.bbc.co.uk/news/health-52937153#
It has found that hydroxychloroquine is not an effective treatment for COVID-19 and, as such, its use against the virus should be ceased.
This is obviously disappointing news for the fight against COVID-19. However, this should hopefully mean that supplies of the drug are
more secure for people with lupus and other rheumatologic conditions.

Best wishes,
Paul

Coronavirus update from Head Office 04/06/2020

Hi everyone,

I have just published significant updates to our information and guidance article about coronavirus (COVID-19) at https://www.lupusuk.org.uk/coronavirus/

A few key changes include:
• Updated shielding guidance from officials
• Newly published (early) findings from EULAR about immunosuppressant risk in COVID-19
• Removal of BSR Risk Scoring Chart (due to some mistakes in categorising risk for lower and moderate risk patients)
• Guidance about children returning to school
• Expanded guidance about attending medical appointments
• Changes to guidance about face masks

Yet again, Dr Chris Wincup has been a massive help. This time around we’ve also had invaluable input from Prof Chris Edwards Dr John Reynolds.

We will do our best to provide some format of the guidance in the summer News & Views magazine.

Once again, we’d be really grateful for your assistance in sharing this information and guidance with your local members. I’ll be sharing it on our social media very shortly.

If you have any questions or suggestions, please let me know.

Best wishes,
Paul

Thank You to our Volunteers!

Easing of Shielding For Lupus Patients 01/06/2020

Hi everyone,

I’m sure many of you will have seen the news about changes to the Shielding guidance for people considered ‘clinically extremely vulnerable’ which are effective from today. The change was announced at 11pm on Saturday 30th May with no prior warning. There is some debate about whether this guidance is in line with the recommendations of scientific experts and based on evidence and therefore we expect to receive a lot of enquiries this week.

The latest Government guidance can be found here – https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Today we will be consulting expert lupus clinicians for their opinions on the change of guidance and working on updating our information and guidance at https://www.lupusuk.org.uk/coronavirus/

Ultimately the decision for someone who is shielding to leave their home is a very personal one – we will do what we can to present reliable information to assist people in making an informed choice.

Best wishes,
Paul

Paul Howard

Chief Executive

LUPUS UK

St. James House

Eastern Road

Romford

Essex RM1 3NH

Tel. 01708 731251

www.lupusuk.org.uk

 

Hydroxychloroquine Update

Hi everyone,

We’ve received some enquiries and concerns about the supply of hydroxychloroquine again following US President Donald Trump’s remarks yesterday. Therefore we have updated our article at https://www.lupusuk.org.uk/covid19-hydroxychloroquine/

On Tuesday 19th May 2020, US President Donald Trump alleged that he is currently taking hydroxychloroquine as a preventative measure against COVID-19. This is despite any evidence indicating that the medication may have a protective effect against the virus and warnings that it could be unsafe for treating COVID-19.

In March 2020 following a previous press conference in which President Trump praised hydroxychloroquine as a potential “game changer” in the fight against COVID-19, global demand for the drug increased significantly; this even caused a short-term supply issue in some parts of the UK.

We do not anticipate any supply issues in the UK following this latest announcement. Following the previous shortage, due to an unexpected increase in demand, action has been taken by regulators and government to safeguard stocks for people with lupus and other autoimmune rheumatic conditions and prevent prescriptions being written for people concerned about COVID-19.

Best wishes,

Paul

‘Living with Lupus 2020’ survey

Hi everyone,

On World Lupus Day, LUPUS EUROPE launched their ‘Living with Lupus 2020’ survey. You can read about it on our website at https://www.lupusuk.org.uk/living-with-lupus-survey/

We would like as many people from the UK as possible to complete the survey, so please help us in spreading the word. We’re told it takes about 10 minutes to complete and LUPUS UK will receive €1 per UK participant for the survey (up to a maximum of €250).

Thank you,

Paul

Azathioprine availability update

Hi everyone,

 

We’ve just published an update to our webpage – https://www.lupusuk.org.uk/uk-azathioprine-supply/

We have continued to receive occasional reports from people with lupus who have been unable to fulfil their prescription for azathioprine. We’ve just received confirmation via the Cambridgeshire & Peterborough formulary that there has been a supply issue. We have updated our page to provide a list of manufacturers who are confirmed as having stock available.

 

We hope this will aid anyone still unable to get their medication.

 

Best wishes,

Paul

Ecclesiastical Donation. We need your nomination!

Hi everyone,

Ecclesiastical is once again supporting UK charities by awarding grants of £1,000. They are providing £1 million this year, over two funding rounds.

To help LUPUS UK receive one of these grants, we need to receive as many nominations through the Ecclesiastical website as possible between now and the 24th May 2020. You can find all the information you need at https://www.lupusuk.org.uk/movement-for-good/.

Please nominate the charity using the online form and share this with your local members, friends and family encouraging them to do the same.

We will be scheduling multiple posts for our social media channels for you to share.

Best wishes,

Paul

Fibromyalgia



Group and National Council Meetings

Hi everyone,

I hope that you and your loved ones are safe and well.

At the beginning of March with the UK outbreak of COVID-19 we recommended that all group meetings and events should be cancelled throughout March and April. We are now extending this cancellation of events until further notice. https://www.lupusuk.org.uk/meetings-cancelled/

We are expecting the UK government to announce plans for the easing of the lockdown in England on Sunday evening. We don’t yet know what they will propose, but we know that social distancing will continue for months to come and I expect an extension to the 12 weeks of shielding for the highest risk groups.

Before we re-start meetings/events of any size we will want to ensure that all volunteers & staff of the charity and anyone attending will be safe and feel comfortable. We don’t know when we will be able to guarantee those safeguards.

In light of this situation, Rebecca (our Trust Fundraising Officer) is applying for grants to fund remote support group meetings and information events. We hope to be able to provide Regional Groups with additional technology to host video/telephone meetings (should they wish) and also for the charity to host interactive information sessions online with lupus clinicians and researchers. We will provide you with more information about this as it becomes available.

If you would like any assistance or guidance for engaging with local members using currently available technologies, please get in touch and the National Office Team will do its best to help.

Take care,
Paul

Paul Howard
Chief Executive
LUPUS UK
St. James House
Eastern Road
Romford
Essex RM1 3NH
Tel. 01708 731251
www.lupusuk.org.uk

Lupus Coronavirus Podcast

In this podcast, Sara Booth, who is a member of our CLG committee and of University of Cambridge, talks to Professor Sarah Rowlands (Florey Professor of Infection and Immunity, University of Sheffield and Honorary Consultant Physician Nuffield Department of Medicine, Oxford), who specialises in infectious diseases and has a special interest in immunity to viruses.

CORONAVIRUS

Hi everyone,
I’ve just published updates to our article about the UK Hydroxychloroquine Supply – https://www.lupusuk.org.uk/covid19-hydroxychloroquine/
We have some good news. After conversations with Blackrock Pharmaceuticals and Zentiva yesterday afternoon they informed me that the shortage appeared to be due to an increase in demand earlier in March that the wholesalers weren’t prepared for. Some of the regional depots ran out of stock by they are now redistributing their back-up supplies to solve this problem. Zentiva and Blackrock also have increased quantities entering the UK market over the next few days.
There is guidance in our article now for anyone who hasn’t been able to get their prescription fulfilled.
If you hear of members in your areas continuing to have a problem with this, please let me know so that we can keep working on the problem.

Thank you,
Paul 02/04/20

Coffee and Chats

It is with regret that due to the current Coronavirus pandemic, we have decided to cancel coffee and chat meetings until further notice.
We will commence our C & C’s as soon as the situation improves as advised by the health authorities. Keep well.

12 days of giving

 

£120,000 | 120 charities | 12 days
05 November 2019
Ecclesiastical Competition
Once again our 12 days of giving is designed to provide vital funding to charities by donating £1,000 to 120 charities over 12 days in the run up to Christmas.

12 days of giving
Nominate a charity
With your support, we can help to change people’s lives for the better. You can nominate any UK or Irish registered charity you choose and nominations will remain open until midnight the day before each draw. Draws will take place each weekday from 5 – 20 December 2019.

The more nominations a charity receives the greater the chance of them winning, So please do spread the word and encourage your friends, family, colleagues and anyone else you can think of to nominate too!

Recycle your used ink cartridges and help us raise money!Visit Recycle4Charity.co.uk »

Cambridge Concert Orchestra Plays for Cambridgeshire Lupus Group.
19:30 23rd November 2019 St John the Evangelist, Hills Road, Cambridge.
Raising funds for the Shelagh Cheesman Information Day 2020.

Tickets from £10 from  Eventbrite

 

 

 

Availability of some brands of Hydroxychloroquine (Update)

Hi everyone,

I have another brief update regarding hydroxychloroquine, this time related to the Blackrock Pharmaceuticals version.

We have been in regular contact with the team at Blackrock and Creo Pharma and they have been taking action to try and resolve the problems patients are having. Unlike with Zentiva, they do not have any supply issues themselves. The problem is that the large wholesale suppliers have not been ordering sufficient quantities of their product to satisfy the demand.

Blackrock wanted to dispute any rumours that their product is unavailable or discontinued. They sent letters to UK wholesalers and Retailers last week confirming the full availability of their hydroxychloroquine tablets and encouraging them to order sufficient quantities. These letters are also available to read on the Blackrock website at https://www.blackrockpharma.com/.

You can read the full update on our website here – https://www.lupusuk.org.uk/blackrock-hcq/.

Best wishes,
Paul

Paul Howard
Deputy CEO
LUPUS UK
St. James House
Eastern Road
Romford
Essex RM1 3NH
Tel. 01708 731251

Cambridge Concert Orchestra Plays for Cambridgeshire Lupus Group.
19:30 23rd November 2019 St John the Evangelist, Hills Road, Cambridge.
Raising funds for the Shelagh Cheesman Information Day 2020.

 

 

 

 

Availability of some brands of Hydroxychloroquine ( Second Update)

Hi everyone,

We have two separate updates regarding the availability of hydroxychloroquine;

1)      Teva UK Limited have discontinued production of their version of generic hydroxychloroquine tablets.

–          More information and advice about this is available on our website at https://www.lupusuk.org.uk/teva-hydroxychloroquine/

2)      Zentiva have been experiencing a systems issue in distribution centres which has been affecting supply for a few months. Due to all the reports they have now prioritised this medication and orders should be fulfilled with wholesale suppliers by the end of this week/beginning of next week. Again, more information and advice about this is on our website at https://www.lupusuk.org.uk/zentiva-hcq/

I have updated the general article on our website to reflect this new information – https://www.lupusuk.org.uk/hydroxychloroquine-prescriptions/

I will keep you advised about any further developments.

Best wishes,

Paul

Paul Howard

Deputy CEO

LUPUS UK

Availability of some brands of Hydroxychloroquine (Update)

 

 

 

First Wheel of Fortune Prize won by Pixie the Poodle.

Thank you to Helen Parish for organising our entry for the Wheel of Fortune at “The Nook” Swavesey, and for Ecology Link for sponsoring the prizes. Please pop along for

a coffee and a spin. Our first winner is Pixie the poodle who has won a Bee mug.

Availability of some brands of Hydroxychloroquine

Hi everyone,

In recent months we have been receiving an increasing number of enquiries from people who are unable to get hold of some brands of hydroxychloroquine (most commonly Zentiva and Blackrock). Some people with lupus require a specific brand because they may experience bad side effects from other brands (usually Quinoric). The current issue has nothing to do with manufacturing or supply issues.

I have updated and improved the information we have on the LUPUS UK website, as well as producing a downloadable pdf for people to provide to their doctors/pharmacists. This is now available at https://www.lupusuk.org.uk/hydroxychloroquine-prescriptions/. This information will also be published in the summer edition of News & Views magazine. We would be very grateful for your assistance in disseminating this information to as many patients and healthcare providers as possible please.

Today we will also launch an online survey to help us better understand how many people may be affected by this problem. The survey will be open for the next two weeks at https://www.surveymonkey.co.uk/r/hydroxy. Again, we would be grateful for your help in sharing this link and encouraging as many people who take hydroxychloroquine as possible to complete it.

Thank you,
Paul Howard
Deputy CEO Lupus UK

Help create a national register for people with rare rheumatic diseases

A key commitment of the UK’s Strategy for Rare Diseases is to create national registries. Better data will help us to find out how many people have each rare disease, how they are diagnosed, and how and where they are treated. This will give better information to people living with rare diseases, their doctors, and the commissioners of health services. It will mean that more people with rare diseases can be involved in research, and this will result in the development of new and better treatments. The aim of this research is to improve health for people with rare diseases.

I am working with the National Congenital Anomaly and Rare Disease Registration Service, which is part of Public Health England. They are starting to collect data on rare diseases. The work I am doing means that they can prioritise rare rheumatic diseases (such as Lupus, Vasculitis, Myositis, Sjögren’s syndrome, Scleroderma and Behҫet’s disease). We need to do research on the best ways to find and register people with rare diseases. Can you help us find a way to do this effectively and efficiently?

If you would like to give your views, and help shape or champion research on the best ways to do this please contact:

fiona.pearce@nottingham.ac.uk, Dr Fiona Pearce, Clinical Lecturer, University of Nottingham

More information on the data collected by the NCARDRS, how it is used and your right to opt out of the register if you wish is available at www.gov.uk/guidance/the-national-congenital-anomaly-and-rare-disease-registration-service-ncardrs.

 

 

 

 

 

“Best Health Possible”

A course presented and devised by our Committee member Dr. Sara Booth.

A Free taster evening Wednesday 27th February 2019 at

Fairycroft House, Saffron Walden.

For further information contact:  sarablackwater59@icloud.com

 

 

 

 

 

 

 

 

 

 

 

 

“This is Lupus” makes Charity Film Awards shortlist  

.

By Paul Howard

Hi everyone,

I received this email a short while ago informing us that our video #THISISLUPUS (https://www.youtube.com/watch?v=zFVQ2RJ3HaM) has made it onto the shortlist for the Charity Film Awards. This is thanks to the many people who helped to support us by voting for our entry in November/December 2018. I have completed the next steps and now we await the result from the judges to see whether we will be finalists.

Thank you to everyone who helped share the voting link.

Best wishes,
Paul

Paul Howard

Deputy CEO

LUPUS UK

Verity Clarke Charity 100 mile swim

Hello, my name is Verity.

Myself and some dedicated friends will be swimming 100 miles between January and April in 2019. 100 miles equates to 6,437 lengths of a 25-meter pool.

I previously organised a fundraiser for Lupus UK to help raise awareness. Lupus has had an enormous impact on my life as my grandmother, Patricia was diagnosed and later lost her life due to this disease. The time taken to diagnose played a large part as it was late and hindered much of the treatment.

Lupus is an autoimmune disease. The immune system mistakes the body’s own tissues as foreign bodies or invaders and attacks them. The general treatment of Lupus has to be tailored to an individual to control the symptoms and hope to slow the damage to organs.

This swim in honour of my Grandmother.
It’s not only to raise awareness but to hopefully generate a little money to go towards research.

So please donate any sum of pennies you may have, and if you would like to take part and swim a few lengths that would be greatly appreciated.

 

 

 

 

£120,000 to 120 charities in 12 days!

Hi everyone,

Last year LUPUS UK was fortunate to be one of 130 charities chosen to receive a £1,000 donation as part of Ecclesiastical‘s 130th anniversary. Due to the success of last year’s festive campaign, the organisationare doing it all again this Christmas! Each weekday from 6th to 21st December 2018, 10 charities will win £1,000. That’s £120,000 to 120 charities in 12 days!

You can nominate LUPUS UK for the competition by going to https://ecclesiastical.eu.qualtrics.com/jfe/form/SV_3IC3eSnah4XcQo5. You will need to enter our Registered Charity Number which is 1051610.

The more nominations a charity receives, the greater the chance of them winning. So please make sure you tell your local groups, family, friends, work colleagues and anyone else you can think of to vote for LUPUS UK!

To help share the message I’ve created this webpage about the competition with a link to the nomination form – https://www.lupusuk.org.uk/ecclesiastical-competition/

Thank you for your help!
Paul

Paul Howard
Deputy CEO
LUPUS UK
St. James House
Eastern Road
Romford
Essex RM1 3NH
Tel. 01708 731251

 

Fluctuation, invisibility, fatigue – the barriers to maintaining employment with systemic lupus erythematosus: results of an online survey. Paper published by our committee member Sara Booth.

Congratulations to our committee member Sara Booth who has been successful in having her paper published by the world renowned Lupus Journal that is produced for specialists around the world and edited by Prof Graham Hughes.  Please access the paper by this link Barriers to Maintaining employment or the pdf. 


WOrld young Rheumatic Diseases Day (WORD day) 2019

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WOrld young Rheumatic Diseases Day (WORD day) 2019

ENCA (The European Network for Children with Arthritis) is planning the first WOrld young Rheumatic Diseases Day (WORD day) which will take place on 18th March 2019. This will be the first international awareness day for children and young adults living with rheumatic diseases.

Over the next few months ENCA will be creating more promotional material and a WOrld young Rheumatic Diseases Day awareness video which we will share with you through our website and social media channels.

We’d also like to invite any young adults living with lupus, or parents of a child living with lupus to share their experiences with us for this awareness event. If you would like to write an article or make a short video, please contact us for more details of how you can get involved.

Raising Awareness of Lupus with our MPs.

Please see our new page, October awareness month, with a pro forma for a letter to raise awareness of Lupus and the issues that matter to you with your local MP. October is Lupus awareness month and the right time to make our MPs aware!

Cambridge Building Society Community Award Night

Helen and Lara with our impressive cheque.

Took place at the Felix Hotel in Cambridge. 15 charities took part in the final and received their award from the £12,000 kitty. The size of each

Lara Our Social Secretary receiving our cheque from Waitrose manager Mike.

Lara Our Social Secretary receiving our cheque from Waitrose manager Mike.

award was in proportion to the number of vouchers collected by the group. Our award was a wonderful £709. A massive thank you to Cambridge Building Society and the Cambridge Evening News and to Helen and Lara for representing CLG.

Donation from Waitrose & Partners

CLG was selected as one of the charities for the Trumpington Waitrose & Partners Community matters Scheme for July. There were 3 charities that were voted for by using the green discs given to customers at checkout.

One of the other charities was “Guide Dogs for the Blind,” so we had a great result in receiving £284.00.

A great big thank you to Waitrose & Partners  for their donation to us and for running the scheme.

Please help Pembrokeshire Group

We have been contacted by Wendy from our new Pembrokeshire Lupus Group. Her email is below and please ask you friends to sign as well.

Hello

I run the relatively new Pembrokeshire Lupus Support Group and I was wondering if you would be willing to share my petition link with your members?

If you have any queries, please do not hesitate to ask me.

Thank  you.                                                                                                                                                                                               

Wendy Diment

https://www.change.org/p/secretary-of-state-for-health-at-the-welsh-assembly-government-campaign-for-access-to-specialist-lupus-care-for-people-living-with-lupus-in-pembs-wales?recruiter=889439093&utm_source=share_petition&utm_medium=copylink&utm_campaign=share_petition

 

We need your Tokens!!!

Thank you to all who voted for us and we have succeeded in reaching the final  round.

So between the 24th July to the 10th August we need to collect tokens from the Cambridge evening news, the more tokens we can collect the bigger the share of the £12,000 Cambridgeshire Lupus group will receive.
Please can everyone who has or knows someone that has the Cambridge evening news save them for us between the dates above so we can arrange collection or by sending them in a prepayed envelope.

Thank you.

We need our votes!!!

CLG has entered the Cambridge building Society Cash for the Community Competition for a slice of £12,000 donation available to local charities and help groups. To move into the next round we need as many votes as possible made via this link. https://www.surveymonkey.co.uk/r/cashforthecommunity18. Please share this link to your friends so that we may gain as many votes as possible. Closing date for this round is Wednesday 18th July 2018.

Very Sad News.

We share the very sad news that Shirley Smith passed away peacefully at The Arthur Rank hospice on Thursday 7th June,  after a battle with cancer.

Shirley

Shirley had been a committee member for many years and regularly came to the coffee and chats. She will be sadly missed.

The family would like to welcome you to the funeral on 27th June at 12.00,  St Andrews Church, Swavesey, then the Cambridge crematorium followed by refreshments at The White horse pub, Swavesey.

Flowers or donations to CLG. Thank you

 

Please help us!

Most of you know that after several years as Chair, Shelagh has stood down from our committee.  Although we are really lucky to have quite a few other committee members, we urgently need to re-think and re-group the committee. We didn’t have an AGM this year due to illness, work commitments and family issues so officially all the remaining committee members are serving in an interim role only and we really need to organise an AGM and get the committee back on track.

We need your help – many hands make light work and we would welcome additional committee members in any role.  The workload isn’t huge – we mostly communicate by email and phone so it’s not a case of constant meetings etc.

A few of our supporters have indicated that they would be willing to help, so what we would like to do is have a very informal get together with anyone willing to become involved – whether it be in an ‘Officer’ role, helping with the newsletter, awareness raising, acting as a point of contact for the press and pharmaceutical companies, to give lupus presentations to local clubs and societies, to come up with fundraising ideas or simply to contribute ideas to lead the group forwards. Davina and Lara will organise it, they just need to know who is interested in supporting us, and what days/times would suit most people. We will even provide refreshments.

We are extremely proud of what we have achieved over the past few years – our group is one of the most successful and active in the country. We helped to secure the post of a specialist lupus nurse at Addenbrooke’s, our Information Days and AGM’s have always attracted the largest audiences, we have excellent relationships with the wonderful lupus teams at Addenbrooke’s, Hinchingbrooke and Peterborough hospitals, we are asked to attend events organised by pharmaceutical companies and the NHS and our ‘coffee & chat’ get-togethers are well attended.

So, where do we go from here?  We need new ideas and enthusiasm – let’s make those blank stares from people when we say we have lupus a thing of the past. Without additional input our group is in serious danger of having to close.

Please get in touch!!

If you can help in any way please contact:
Davina – Tel: 01954 211679
Lara – Tel:  01954 210765
or email us at
cambridgeshirelupus@gmail.com

‘Living with lupus’ videos for Lupus Awareness Month

For Lupus Awareness Month, Shaista and Colette, who both write regularly for our newsletter and have been wonderful supporters of our group decided to make a couple of videos about the challenges of living with lupus. Click the links below to see the videos.

A Conversation Between Colette and Shaista Part I – Lupus at Birth. https://youtu.be/Lu5BzDfjqQA

A Conversation Between Colette and Shaista Part II – Lupus & Language. https://youtu.be/UMpMtRGBYQk

These two videos received a great response, so Shaista asked Daisy (who writes regularly for our newsletter) to take part in another conversation on different subjects. They have just completed two videos – you can watch them by clicking on the links.

A Conversation Between Daisy and Shaista Part I: Teenage Lupus, School & Social Media https://www.youtube.com/watch?v=1RBjqFAQsbo&t=1335s

A Conversation Between Daisy and Shaista Part II: Mental Health With Lupus, PIP & Cosplay! https://www.youtube.com/watch?v=sv4x2ClNGn0

Many thanks to Colette, Shaista, Daisy and Shaista’s Mum (who filmed the conversations).

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