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A local group of the National Rheumatoid  Arthritis Society

BLACKPOOL
NRAS GROUP

18th  May 2017 - The effects of RA -  Dr Rao, Consultant Rheumatologist

Dr Rao gave an interesting and enlightening talk, to a large turnout, on the effects of RA on the rest of our body and organs… and also an insight into her pastime… bird watching.


                                                          …More info to follow…







16th  March 2017 - Getting a Good Nights Sleep -  The Occupational Therapists - Vicky Crosby & Lorna Collins. Started by explaining their role within the rheumatology Team. They then went on to explain some of the common sleep problems, what is ‘normal sleep’ and what are ‘sleep cycles’. So, how do we get a ‘good nights sleep’? Vicky and Lorna explained what we should be doing to get a good nights sleep - relaxation, avoid stimulation & coffee, have a wind-down routine and get to bed when you are tired. Common sense really! There were lots of questions asked and Lyn gave Vicky and Lorna thanks for a most enlightening talk. See a copy of their presentation here


19th  January 2017 - Your Everyday with RA - Our meeting this month was a chance for us to discuss and share our lives living with RA. How do we cope on a daily basis? Do we have any tips that may help other RA sufferers? It was particularly good that everyone had an opportunity to be included in the discussions and a fairly wide range of topics were covered. From vibrating plates to feet in bowls of water with electric pads attached (definitely dodgy!), cold swimming pools to steam rooms, diagnosis, prognosis, treatments and medication. A wide range of topics were discussed and we still learn from each other

 

17th  November 2016 - Our 6th Birthday - We celebrated our 6th birthday at Clifton Hospital, along with many friends. We did not have a speaker for this party, but all ‘enjoyed’ a music quiz. With nibbles and drinks followed by birthday cake and raffle, everyone enjoyed an evening with friends. Thanks to all those that came to celebrate with Blackpool NRAS group. Special thanks to the Rheumatology and Occupational team members for their support and hope that we will see you all again at our varied meetings through 2017 and at our 7th birthday party on 16th November 2017.


15th September 2016 - Guest Speaker - Angela & Joan, Rheumatology Nurse Practitioners - Developments in Rheumatology.

Our guest speakers this month were the fantastic BADRAG supporters, Angela and Joan, our Clifton Hospital Nurse Practitioners. They had attended the BSR (British Society for Rheumatology) in Glasgow earlier this year. They reported back to us on some of the sessions they attended at the conference.

Joan reported on the drugs that have been used to treat RA. In the past there was Analgesics. Currently DMARDS, Anti-TNF’s, Biologics and recently, biosimilars. Next ? Oral biologics and Jakinibs. An emerging class of medications called janus kinase inhibitors (JAK inhibitors, or jakinibs) is offering new hope to patients  who don’t find relief with other treatments. Jakinibs are a new class of medication and work in an entirely different way than the biologics that have been used to date. Jakinibs are small molecules that work inside cells. Traditional biologics such as etanercept (Enbrel), adalimumab (Humira), abatacept (Orencia) and Infliximab (Remicade) block pro-inflammatory cytokines from outside.

Jakinibs are taken by mouth and block the enzymes JAK1, JAK2, JAK3, and tyrosine kinase 2, which play a role in the cell-signaling process that leads to the inflammatory and immune responses seen in RA and other conditions. Jakinibs interrupt the signaling pathway. They are not available in the UK and are only approved in low doses in the USA. Side effects are great. But all drugs start in this way.

Angela gave us a timely reminder of self-management of our RA. We were told to be organised - keep track of our symptoms, as this helps doctors, nurses and consultants. Pacing activities - Don’t try to do all at once, take time and rest. Stay active - even with RA, we need to take some form of exercise and should enjoy it. Warming up correctly before starting and wearing correct footwear was important. Sleep is critical and we must get sufficient to get relief from pain and recover from fatigue. We should also keep our weight down to ensure we were not carrying too much additional weight putting extra pressure on our joints and yes, eat a healthy well balanced diet.

Joan and Angela then answered questions from those attending. With thanks from Lyn, it is hoped that Joan and Angela will be back to teach us more.


21st  July 2016 - Guest Speaker - Lyn Wilson, Tai Chi Basics.

Lyn has been doing Tai Chi for quite a few years and offered explain the basics to us and stressed the benefits this low impact and slow exercise was for those with RA. The gentle, flowing movements in Tai Chi promote relaxation, stress relief and conscious awareness of the present moment. Tai Chi may help reduce stress, depression and anxiety, improve your balance and coordination, lower your blood pressure and promote better sleep, among many other benefits. Because it is a gentle, low-impact exercise, Tai Chi is generally suitable for people of any level of physical fitness.

Starting with its history, Lyn demonstrated a few of the movements and we all joined in! The advantage of this exercise was that it can be done whilst sat in a chair, which Lyn explained that these movements can almost be completed anywhere - at home, in the car, on the bus or at work.

Thank you Lyn


19th May 2016 - fun social evening with Quizzes, Puzzles & Riddles


17th March 2016 - Guest Speaker - Dr A Jeffries, Consultant Rheumatologist - Pain and RA

Our guest speaker tonight was the newest member of the Blackpool, Fylde & Wyre rheumatology team, Dr Jeffries. He had agreed to speak to BADRAG on a topic that is very familiar to RA sufferers, pain.

After introducing himself and giving a brief summary of his working career, letting us know his hobbies include photography and his 1964 Morris Minor, he treated us to an explanation of why we get pain and why it occurs - to protect us. A complicated bit of science increased our knowledge of how the pain nerve signals are sent to the brain  and why ‘rubbing’ a pain can ‘make it better’! The four steps/levels of  pain management medication examples used - paracetamol types, codine based, morphine and epidural types. He then went on to inform us the importance of exercise, (non impact exercise for RA sufferers) - swimming, pilates, tai-chi and how we should all see(n) a physiotherapist.

After answering questions, group coordinator proposed thanks to Dr. Jeffries and invited him back soon. Thank you Dr. Jeffries.


21st  January 2016 - Forum - What do you want from BADRAG meetings?

An usual meeting this month for BADRAG. It was to learn from attendees what they wanted from BADRAG meetings and which speakers they would like to invite. A number of suggestions were received and group organisers had a number of new ideas to consider.  Looking forward to 2016….


19th November 2015 - BADRAG 5th Birthday

Has it been five years since BADRAG was formed? We have had so many interesting and informative speakers to our meetings. So for this months meeting, we had a ‘Birthday Party’. With bingo, raffle, nibbles and plenty of our friends and supporters, the evening was a great success. With the donations and participation in our raffles, our friends and supporters have allowed us as a group to make a donation to NRAS that allows them to continue their support to all those living with RA, now and in the future.


17th September 2015 - Guest Speaker  - Janice Booth, Rheumatology Nurse Practitioner - Putting Research into practice

One of BADRAG’s great supporters, Janice, gave an absorbing talk on ‘Putting Research into Practice’.

Explaining ‘What is research?’ and the guidelines under which the research is performed, she went on to inform us how research into RA has benefited us - Best way to manage RA, what medication to use, when to take it and ‘Treat to Target’ - attention to DAS.

An interesting fact revealed was that 85% of us do not understand what the doctor has told us and 50% leave the clinic unsure of what to do! (Quite frightening really - If in doubt, ask!)

Research has bought us Biologics, the variety of RA drugs used in RA and how best to manage the disease. Changes proposed for the treatment and monitoring of those with RA include early diagnosis, treatment pathways using ‘Treat to Target’, expansion of nursing services, telephone hotlines and annual review clinics - all resulting from research. A Q&A session took place.

Thank you once again Janice for your informative and interesting talk.


16th July 2015 - Self Help forum - Group discussion on living with RA

It had been some time since our previous ‘group forum’ type meeting so, this month we shared our experiences of living with RA. There were a number of examples given… disappointment with the prescription ordering and collection service from their chemist, rheumatoid nodules, biologics and the problems these bring, opening bottles, PIP process. An interesting topic was that raised by one attendee was their decision to manage their RA through diet rather than prescription medicines. This was met with extreme interest from those at the meeting with consideration as a topic for a future meeting. Thanks to all those who attended and their participation. See you at our next meeting.



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