You are not alonePolymyalgia Rheumatica and Giant Cell Arteritis Newsletter Autumn/Winter 2013

You are not alonePolymyalgia Rheumatica and Giant Cell Arteritis Newsletter Autumn/Winter 2013

Registered Charity No: 1138409

Please get in touch: PMR&GCA UK North EastTel: 0191 411 1138Email: pmrgcafightersne@googlemail.comwww.pmr-gca-northeast.org.uk

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Nollaig Shona Dhuit, Feliz Navidad, Joyeux Noël , Zalig Kerstfeest, Frohliche Weihnachten, Buon Natale, Milad Mubarak – as there are nearly 200 countries in the world today, one thing

to keep in mind when struggling to remember the right thing to say, almost every country in the

world recognises no matter what the native language might be: Merry Christmas!

Page 2Dr Sarah MackieNIHR Clinician Scientist

Ruth Boyes and Charlie

Page 2Heather Russell Rheumatology Nurse

Page 4Kay West, Physiotherapist, Middlesbrough

Page 7Ann Chaganis

Page 7Jack Robson in training

Page 6Charlie and friend reading

Jack and John

Chair and Jack

Dr V Saravanan Rheumatologist, Sept meeting, Gateshead

Merry Christmas & Healthy New Year

www.pmr-gca-northeast.org.uk 1

2www.pmr-gca-northeast.org.uk

Hello, I am a Leeds-based rheumatologist and my research is based around the causes and treatment of PMR and GCA. I have now been researching these diseases for nearly 10 years and I am still learning something new every day! My research is driven by my experience of

treating patients with these conditions, and by ongoing conversations with patients as to what is important to them about PMR and GCA.

In 2005, Professor Ann Morgan, Dr Colin Pease and I established the UK GCA Consortium, which is a large study of patients with GCA recruited from NHS hospitals across the UK, working together with others including Professor Bhaskar Dasgupta and Dr Richard Watts. Our aim is to discover more about the genetic causes of GCA, as well as to provide a platform for other sub-studies investigating other aspects of GCA. I was awarded my PhD in 2010; after this, I was appointed as a NIHR Clinical Lecturer. For me this was a vital period spent learning more about healthcare research while completing my clinical training as a rheumatologist. During this time Ann and I have kept the UK GCA Consortium going (sometimes through rather thin periods of funding) and now we are planning to put our genetic data together with data from other researchers in Europe, America and Australia. This international collaboration is essential in order to maximise our combined ability to discover more about the genetic contribution to GCA. The study is still ongoing: our target is to recruit 1,000 patients with GCA.

Since March I have been funded by a NIHR Clinician Scientist Fellowship. This means that I can spend a dedicated period of time on my new PMR study, ADDRESS-PMR, that developed out of a number of informal discussions with groups of patients locally. Two major themes I identified from my conversations with patients about PMR were aptly summarised by one of our patient research partners as ‘accurate diagnosis and avoiding over-medication’. PMR is not always an easy diagnosis to make, even for experts. The potential side effects of the prednisolone treatment are also a cause of concern for many; and since many of the side effects are dose-related, getting the right dose is very important. This Fellowship has also given me the opportunity to work with experts from many different fields and to follow a plan of further training and development.

Unfortunately, considering how common GCA and PMR are in the UK, there is a relative lack of published research

to guide evidence-based treatment decisions. This means that most of the current guidelines are based on expert consensus (and history has taught us that experts can and do get it wrong sometimes). This in turn makes it difficult to create strong guideline recommendations that have the power to change clinical practice. It is, of course, critical that all research conducted is of the highest quality. The days of the ‘gentleman scientist’ labouring alone in an office or laboratory are long gone. Research is now a team effort and there is a place for everyone at the table – not just people like me, but also other healthcare professionals, patients and the public. I think this is the best way to make sure that research really improves clinical outcomes and quality of life for people with PMR and GCA.

Dr Sarah Mackie, NIHR Clinician Scientist, Leeds Institute of Rheumatica and Musculoskeletal Medicine

Editor’s notes

1: Sarah is a Rheumatologist currently in year one of a five-year NIHR Clinician Scientist Fellowship, which centres around ways of improving the diagnosis of polymyalgia rheumatica (PMR).

2: Vice Chair, Membership Sec and a Member met with Dr Mackie recently to see how we could assist further.

My name is Heather Russell and I have been a rheumatology research nurse for approximately two years, based at Freeman Hospital. I have been nursing for 30 years with quite a varied background, worked mainly in critical care. I originally specialised in burns, moving onto acute medical admissions and then day surgery, followed by HDU/ITU Neurosurgery and trauma.

At the beginning of the year, one of our consultants (Dr Peterson) was approached regarding a trial in GCA (Giant Cell Arteritis). GCA was a new disease to me, so I began reading about it and found out about the PMR&GCA UK North East Support. I attended two meetings and was made very welcome – the wealth of knowledge and support given to and by all members is astounding.

The Chair asked if I would write an article to give a little insight into the basics of research and why it is important in the advancement of patient care.

Research

Research and clinical trial

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Medical researchMedical research is looking at new ways to treat patients and help with early detection and prevention of diseases. It is looking at potential new treatments which can be:

4 new drugs4 a combination of drugs4 surgical procedures4 new ways to use existing treatments

Research can also be used to improve the quality of life for people with chronic illness.

Observational studiesObservational research uses information collected during routine treatment. Information is generally gathered through participants donating blood samples; and often involves the completion of questionnaires at certain points (eg 3 or 6 monthly), ongoing until the end of the trial.

Clinical trialsA clinical trial is research that tests one treatment against another.

It may be medications that are already established and used individually, but are being researched to see how they work as a combination.

New medications are also tested and these are generally measured against a ‘placebo’. This is given to a control group which is otherwise similar to those people receiving the therapy. A placebo is a medication substitute which looks exactly the same as the medication, but has no active ingredient.

You may have heard of blind and double-blind trials? In a blind trial, the researchers are aware of the medication being taken but the participant is not. In double-blind trials, neither the patient nor the research team are aware whether it is medication or placebo being taken.

These approaches help to isolate the true effect of the therapy by comparison with the control group and are a cornerstone of evidence-based medicine. A treatment must be shown to have had a statistically significant effect, when compared with the results from the control group.

Whether it is a clinical or observational trial, the protocol is presented to the MRC (Medical Research Body) and REC (Research Ethical Committee), along with all documents to be used for the trial. The protocol represents all aspects of the treatment including potential side effects; and how the visits are to be carried out and monitored. Approval must be received before proceeding and the approved protocol must be strictly adhered to during the trial. Ethical approval ensures the safety, rights, dignity

and well-being of both the participant and the researcher. Medications and treatments coming out of clinical trials can have a positive impact on the quality of life and patient care; and, in some cases, the progression of the disease.

The GiACTA Trial at Newcastle Freeman HospitalIn Rheumatoid Arthritis (RA) over the last 20–30 years, treatments have developed with the use of medications such as DMARDS (Disease Modifying Anti-Rheumatic Drugs) and more recently biologic medications.

PMR (Poly-Myalgia Rheumatica) and GCA (Giant Cell Arteritis) are under-researched, but are becoming more prevalent in recent trials. At Newcastle Freeman Hospital, we are honoured to have been selected as a UK site for the GiACTA trial, which is looking at the use of Tocilizumab – a biologic drug that has shown to be beneficial in treatment of RA. It is being assessed with prednisone as a combination, using a placebo with prednisone as the control group.

The recruitment target is for patients with newly diagnosed GCA, or patients who are having a flare. We are looking to see if Tocilizumab can aid the reduction of high-dose steroids required to treat GCA and also help to prevent further flares.

A few facts to keep in mind if you are considering research are:

4 Participation in trials is voluntary and it will not affect your standard treatment or care if you decide not to participate

4 If you take part and then change your mind, you can withdraw from the trial at any point – again, this will have no impact on your standard treatment

4 Taking part in a trial may give earlier access to new treatments not yet available

4 You will have a research nurse as a point of contact if you have any problems or queries prior to your next visit

4 Before consenting to a trial, take your time to consider all the information and discuss it with family members, but most of all do what you think is right for you

Many of the advances in disease control that we have today have been aided by medical research. These would not have occurred without the most important and essential factor – participation and involvement from people like you!

To find out more about clinical research you can visit the links below.

www.crncc.nihr.ac.uk/oktoask

www.crncc.nihr.ac.uk

www.crncc.nihr.ac.uk/trials

s

Library, Prince Consort Road 1.30pm start

Monday 27 January 2014Guest Speaker: John Robson Fire & Ice

Monday 31 March 2014Buffet Lunch

Monday 30 June 2014TBA

Monday 29 September 2014Guest Speaker: Dr V Saravanan

Wednesday 22 January 2014

Post Christmas Lunch 12.30pm

Marton Country Club. Needs to be pre-booked. Contact Pam on 01287 623334

Groupnews from the North East

Dates for your DiaryMembers can attend meetings at either or both venues.

Gateshead next meetings

Middlesbrough next meeting

OthergroupnewsCambridge PMRGCA Support First MeetingThere I was standing in front of

my first group meeting. Horror and delight overwhelming my senses – sitting there looking at me expectantly were not the expected 14 participants but 40. What had I let myself in for! Thinking back, I can now see what brought this about.

This first meeting was planned for Wednesday 18 September but organising it had begun some months previously. And, some things I had put into place had obviously worked better than others.

Prior to the first meeting, my article for our local paper was published. However, the paper had omitted to print my contact details! The poor folk who manned the national helpline had to field calls on my behalf (my grateful thanks to them).

I was expecting 14 people with two carers/friends. I had hired a room at the central library and asked Jennifer Nott from the East Anglian group (now Chair of the National) if she would come and help me. She brought along Jane, one of her committee members. Gillian Green (Peterborough) also arrived as she

had been in town to visit family. Little did I know how much I was going to need this vital band of support!

My physiotherapist, Rosemary Hand, was going to talk to us all and take us through some gentle exercises. So, all was set and ready.

Half ten arrived and so did the queue of people waiting to get into the room! It was all hands to the pumps, taking names and contact details, writing name labels (now irrelevant as I would not remember anyone’s names of a group this large!), and ensuring everyone was seated comfortably and had a drink.

Everyone was in good spirits, joined in with energy to the exercises and took on board all that Rosemary talked to them about. We then sat in our groups of 10, introduced ourselves and talked about our ‘journeys’.

Twenty people from the meeting have signed up as members and we have already advertised the existence of the group and had more interest. It looks as though the Cambridge group is up and running and going to be a successful venture. I am absolutely delighted.

Note to myself: Plan, execute, enjoy! After all, who wouldn’t want to be in a room full of lovely people.

Dale Hodgson

Sue Chamber, physiotherapist, at the Middlesbrough venue.

Sue Chambers, Tai Chi instructor, at the Gateshead venue.

PMR GCA Norwich Rita Moss, an email member who is 90. The Chair was visiting a friend (Mary) and took the opportunity to visit Rita. A lovely day was had by all.

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PMR GCA Scotland Jean Miller, founder of the Charity, retired in November but continues as a Patron. A card and flowers were sent from PMR&GCA UK North East Support.

A new Group has started up covering the North West. Ann Chambers is the organiser. Here is Ann’s story.

How the North West Support Group of PMRGCAuk startedAt the beginning of 2011 my mother became unwell; as time went on she was unable to eat and thought she had sciatica due to the pain in her hip

and running down her right leg. She was visiting her GP who arranged for her to have blood tests; all the doctor could tell her was that there were signs of infection, inflammation in her blood.

My mother continued to lose weight and my father became increasingly worried, so much so that he telephoned the doctor himself, told the doctor how concerned he was and that something needed to be done; if you knew my father, you would understand how difficult it was for him to do that.

The doctor saw my mother very quickly and she was admitted to hospital for further assessment and investigation. This was in May 2011; she was in hospital for two weeks and was stable when they allowed her to come home, still no diagnosis but she had improved.

Friday 3 June, my Mum and Dad’s 60th wedding anniversary, and my Mum was eager to be at home that day. I went to my parents’ house that evening taking what I call an indoor picnic, lots of goodies and nice little treats to eat. I couldn’t believe how bad my Mum looked, I thought to myself she shouldn’t have been allowed to come home, I was really concerned.

I went back to my parents’ house at teatime on Saturday to make sure they were all right, my Mum was in bed, looking even worse than she had the day before. I was talking to her thinking “you need to go back into hospital, something isn’t right”. I was very concerned but knew that if I told my Mum she should go back, she would have said she was okay. My Mum said she felt really unwell and had an awful feeling in her head and asked me to help her to the bathroom. She was unable to stand up and kept saying “oh my head!” Mum asked me if I thought she should go back to the hospital and I then decided that she should go back. I didn’t give her time to change her mind. I flew down the stairs and told John and Dad that Mum was going back to the hospital. We helped her down the stairs and into the car.

We arrived at the hospital just after 8pm, told them that Mum had only been discharged day before. I can’t remember how long we sat there with my Mum sliding down in the chair. Eventually, they came and saw my Mum, and apparently they treated her as though she

was drunk, telling her to sit up, ignoring the fact that she had only been discharged from that hospital the previous day. My Mum was moved into a cubicle and a lovely lady came and took blood and went through various other admission procedures.

At approximately 11.30pm, Mum was transferred onto the medical assessment ward and we left her there and I thought that if she was alive by the following lunchtime, she certainly wouldn’t be by the middle of the week.

On Sunday afternoon when we visited Mum was sitting up chatting away, the difference was incredible, I couldn’t believe it. The doctor who had examined her the night before knew what the problem was; he diagnosed PMR and put her on a high dose of intravenous steroids. What a difference a few hours makes! Mum was discharged from hospital at the end of the week and so began the long PMR journey.

Mum kept saying that no one was telling her anything and she didn’t know what to expect or to do or not do; they don’t seem to know anything about it.

I got on the Internet and started looking for answers for her. Eventually, I found PMRGCAuk and saw that there were several support groups but I couldn’t find one in the North West of England. I contacted PMRGCAuk and asked if there was a support group in the North West and said that if there wasn’t then how did I go about setting one up?

And the rest, as they say, is history. I started contacting as many people in the NHS – doctors, professors, consultants, GPs – no one was safe. The first meeting was in March, we held the second meeting in September. The speaker at this meeting, Dr Sathi, felt there was such a need he wanted to come back before Christmas and so I organised a third meeting for 9 October.

In 2014 we are holding three meetings at the Greyhound Hotel in Leigh. Hopefully, the group will go from strength to strength and we will be able to help more people and set up satellite groups around the North West to ensure that people have access to support without having to travel too far.

Ann Chambers

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On Editor’s wish list.

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I was diagnosed with PMR by my GP in September 2012 and this was confirmed by a rheumatologist four weeks later. I attend meetings whenever I can and gave a talk to the Middlesbrough meeting on PAT; my dogs were very welcome ‘guest speakers’.

Interestingly, my mother, who suffered from such serious dementia she couldn’t really tell us how she felt, was bedridden with ‘arthritis’ and had a sudden and complete lack of vision at the age of 85.

I work part-time as a tour guide at a stately home in summer and also help out at a local shop but my main ‘work’ is carrying out visits with my PAT dogs.

I have always lived with dogs and other pets and cannot imagine being without at least one! I have been a volunteer with Pets As Therapy for many years, although I joined because of very sad circumstances. My grandson, Robert, was born brain injured with severe cerebral palsy; he died when he was 23 months old. During his short life we had an elderly rescue cross-breed called Sandy. Although she would never have hurt them, she steered clear of all children. The exception to her rule was Robert. She used to sit for hours next to him in his special chair and he would touch her and smile with delight. Even when his hands clenched on her with an involuntary spasm, she never moved away. Sandy had more understanding of his condition than many humans.

After a difficult time in which we lost Robert, my parents and Sandy too, we adopted another rescue dog, Cassie. I had her assessed as a Therapy dog and it was work she loved. She visited a care home, a hospital and a hospice on a weekly basis and gave unconditional love to literally hundreds of people, working well into her 15th year when she crossed over the Rainbow Bridge. One of our proudest moments was when she was awarded the Dogs’ Trust Lifetime Achievement award, presented by Graham Norton at London’s Guildhall.

The more I became involved with Pets As Therapy, the more I realised what great benefits these wonderful animals could give to so many people.

The Charity itself was founded just over 30 years ago, when it was realised that dogs and cats could provide interest and love in care homes for the elderly. There are over 5,000 dogs and over 100 cats visiting an estimated 140,000 people in the UK every week.

It is a unique charity in that the volunteer uses his/her own friendly temperament-tested, vaccinated and healthy family pet. These wonderful animals (and their owners) visit hospitals, care homes, hospices, day centres, schools, prisons, stroke rehabilitation centres, psychiatric hospitals; they work with dog-phobic children and even ‘listen’ to young reluctant readers (the Read2Dogs scheme). They encourage conversation, give an interest, ‘listen’ to people, calm a distressed person and, most of all, show totally unconditional love.

I now have two Pat Dogs, both Airedale Terriers. Charlie (3) visits a men’s prison, a hospital for young people with severe learning difficulties and a care home. Stella (9) visits a school as a ‘Reading’ dog and a care home. We keep busy (!), always depending on how my PMR is on the day. Both dogs seem to understand when I’m having a bad day and argue between themselves which of them can get closer to me!

It is wonderful charity work with which to be involved. The work of these wonderful cats and dogs benefits the people they visit, their carers, their owners and indeed the animals themselves, especially if there are treats involved!

Ruth Boyes

Pets as therapy

VOTE for CHARLIECharlie was nominated for the award ‘PAT Dog of the Year 2014’ by HMP Wealstun and Whorlton Hall Hospital. Charlie has reached the final six of Pets As Therapy Dog and he will be at Crufts in the main ring (hope I haven’t to run round the ring!) in March 2014. See the Newsletter in Spring to see who won the title.

Please vote for him (and ask your family and friends too). Vote online by sending an email to win@yours.co.uk – type Charlie in the subject box and then press ‘send’.

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We have noted that there’s a rich fund of slang terms for £.s.d.Big ones: multiples of one thousand dollars; Bread: money in general (on the analogy of it being a staple of life); Cabbage: paper money (from its colour); Cheddar: origin unknown, but perhaps from the concept of cheese distributed by the government to welfare recipients; Cs: (or C-notes) from the Roman symbol for one hundred; Dough: akin to the usage of bread; Folding stuff: paper money; Grand: one thousand pounds (as in ‘three grand’ for ‘three thousand pounds’); Loot: originally denoted goods obtained illicitly or as the spoils of war; Lucre: from the biblical expression ‘filthy lucre’, meaning ‘ill-gained money’; Moola (or moolah): money – origin unknown; Shekels: from the biblical currency; Smackers: origin unknown; Spondulix: either from spondylus, a Greek word for a shell once used as currency, or from the prefix spondylo-, which means ‘spine’ or ‘vertebra’; and finally Wad.

We prefer: Donations

Tees Valley Community FoundationTVCF has supported our Middlesbrough group in the past with small grants enabling us to pay for room hire, guest speaker etc. They have approved a grant of £725 to help us produce more newsletters

and steroids alert cards for the Middlesbrough area. We are most grateful to the TVCF.

Ann Chaganis Sponsored SwimAnn swam a sponsored swim in Lake Windermere and raised £250.

Joyce (Mum) and Ann presented the cheque to Margaret at the June meeting.

Sadly, Joyce passed away on 24 July. We attended the funeral and flowers were sent on behalf of you all. Ann does intend to keep in touch with us all and will see you at future meetings.

Jack Robson The Great North RunAt our September meeting, John Robson spoke very proudly about his son’s great

achievement in running the Great North Run in 2 hours 9 minutes for our charity, raising just over £2,000. John explained he was a very active fireman and part of a fundraising team called Fire and Ice, based in Durham. This is joint venture between the Fire service and the Rotary.

John was a very active person climbing mountains and running marathons, until he became ill with PMR. Jack ran the Great North Run in September and we were presented with the cheque at the Fire and Ice evening held

in Ramside Hall. We presented Jack with a scroll which contained all the names of those who had donated. Fire and Ice also donated £100, although this was special as they fundraise for Charities for Children.

Jack will run for PMR&GCA UK NES in the Great North Run 2014, so save your pennies.

Donations

PMR&GCA UK North East Support

Donations&Gift AidWe wish to thank all the people who have donated monies to us over the past few months. We also wish to thank those taxpayers who filled in Gift Aid forms.

Gift Aid enables us to claim 25p for every £1 donated from HMRC. Once you fill in a Gift Aid form we can claim without you ever having to fill in another form.

Further information on our website: www.pmr-gca-northeast.org.uk

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Staying well beating the germs by Caroline Cassidy With winter fast approaching, the season of colds, flu and other nasties will soon be upon us. However, by sticking to a few simple rules it is possible to avoid the viruses and bugs associated with cold weather, so follow these tips to stay healthy this winter.

Get vitamins with vegWhen it’s cold and dark outside, it’s all too tempting to hole up indoors with some comfort food. But winter is when we need our five a day more than ever. Make sure you keep your plate colourful with a wide range of veggies, and swap your sugary snacks for fruit to ensure you are getting all the vitamins and minerals you need. A good helping of dairy is also a must as it is a great source of protein, vitamins A and B12 and calcium. Opt for semi-skimmed or low-fat to ensure you aren’t loading up too much on unsaturated fat.

Get some exerciseMost of us would rather snuggle into the sofa on a dark, rainy night, but exercise gives your immune system an all-important boost during winter, helping you to fight off any bugs that might come your way. If you can’t face layering up and heading out after work, try a good brisk walk at lunchtime, and get the whole family out for a little activity at the weekends. Not only will it help to keep your body healthy, it’s also a great stress-buster and a daily dose of vitamin D from the sun will help reduce your risk of infection.

Get some sleepYou may joke about hibernating in winter, but getting more sleep is definitely a good thing as it helps to strengthen the immune system. Most of us are averaging just six-and-a-half hours per night, less than the Sleep Council’s recommended seven to nine hours. And if you need any more persuasion, research by experts at New York University revealed that it’s only after the seventh hour of sleep that our immune system reaps the benefits.

Protect yourselfYou don’t have to become compulsive obsessive to protect yourself against germs, but washing your hands is essential for killing bugs and stopping the spread of viruses and bacteria. Make sure you wash and dry your hands properly and regularly, use and bin tissues if you do blow your nose, and keep surfaces at home germ-free with an antibacterial cleaner. Hand sanitiser is also a good idea. ATM machines, escalator handrails and door handles are unavoidable for most but are known to spread germs from person to person. Thankfully, hand sanitisers come in pocket or handbag-sized bottles so it’s easy to kill any bugs you do pick up before they can do their worst.

Stay hydratedIf you do succumb to a winter virus, it’s important to keep hydrated. A dehydrated body finds it harder to get rid of cold-weather nasties, so taking fluids is one of the best ways to beat the bugs. Fruit juices and herbal teas, with added lemon for vitamin C, will give your body the best chance of getting back on track.

Keeping your feet warm in winterIn the cold weather, the blood flow to your hands and feet is reduced. This can be uncomfortable or even painful, leading to dry, chapped skin and chilblains. In people who already have poor circulation, extra care must be taken to prevent your feet from getting cold and reducing your blood flow further. If you experience severe problems with chilblains, always contact either your GP or podiatrist. What follows are some simple dos and don’ts to ensure that your feet are kept warm during the cold weather.

DO4 Wear woollen tights or thermal socks.

4 Wear two thin layers: this is better than one thick layer. Always remember to allow extra room in your winter shoes if you are wearing a thicker layer.

4 Wear shoes or boots with a fur lining, or woollen/thermal insoles will also help.

4 Warm your shoes gently before wearing by placing them near a radiator. Do not make the shoe hot. Do not place in front of the fire.

4 Use moisturising cream daily to help keep skin in good condition.

4 Wear slippers and socks at home to keep your feet constantly warm.

4 Wear bedsocks at night to keep your feet warm. If your feet tend to get warm during the night, you can always take them off.

DON’T4 Place your feet in cold shoes.

4 Stay out exposed to cold temperatures for prolonged periods.

4 Smoke – this contributes to poor circulation.

4 Allow your body to become cold.

Published by PMR&GCA UK North East SupportRegistered Charity No: 1138409

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We would also like to thank all our members, their families and friends for their kind donations.