PMR GCA Scotland
Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland
GETTING THE DIAGNOSISFor many the first shock is to be told you have one or both of these conditions, although it can be a relief to have a definite diagnosis. Despite the fact that PMR is one of the commonest inflammatory diseases affecting older people, most people have never heard of either PMR or GCA, and often hesitate to tell others of the condition. People are affected in various ways according to the severity of the illness and some feel very isolated. The second shock is when you realise that you don’t get better “next week”.
Some of us find it extremely difficult trying to explain to friends and family why we cannot function normally because of pain or unreasonable fatigue. We all look well, which understandably makes it very difficult for others to comprehend. It is often difficult to plan ahead. It can be difficult to pace yourself so that you don’t do too much when you are feeling well and then end up in bed for a few days exhausted. It is difficult facing up to the fact that you can’t do what you’ve been accustomed to doing in the time you used to take: for instance, taking 3 days to do 1 hour’s ironing. It is difficult accepting that you will be on long term medication for a long term medical condition. Coming together as a group helps us to cope with these aspects of our condition.
Research and Hope
Research is ongoing and new guidelines are being developed. As they are published we will provide links so that you are kept fully informed. Please do check back from time to time.
One of the keys of self-management, managing your own condition, is being aware of options from diet, rest, relaxation, continuing with as much activity as you are able to manage, through to communicating with your medical professional and everything in between. All may be essential to your well-being and recovery.
Building a trusting relationship with your GP, pharmacist, consultant, rheumatology nurse and others must feature highly so any decisions you make that will affect your treatment should be made with them. In this section we will try and bring you articles and experiences which will help you make the best choices.
When you are in pain, the last thing you want to think about is exercise, yet continuing with as much activity as you are able to manage is essential to your well-being and recovery.
If your medical practitioner approves, the NHS has a Fitness Studio page which links to various videos that you might find helpful?
None of us (probably) would classify ourselves as ‘older people’ but there are some very gentle suggestions on their Exercises for older people page “Keeping active into older age is the key to staying fit, mobile and independent. This guide provides step-by-step instructions for exercises focusing on strength, flexibility and balance, with a set of sitting exercises to get you started”.
If you follow this link (My Conditions, My Terms, My Life) you will find the Alliance’s description of what it means or you can just watch their short YouTube film that includes a professional’s perspective.
We also think you might be interested in Scottish Government Policy – even get involved if you can – so will provide signposts where appropriate.
You may already be aware of the Integration of Health and Social Care, which is the Scottish Government’s ambitious programme of reform to improve services for people who use health and social care services. Integration will ensure that health and social care provision across Scotland is joined-up and seamless, especially for people with long term conditions and disabilities, many of whom are older people. All integration arrangements as set out in the Act and in the Orders and Regulations, must be in place by 1 April 2016.
What is PMR ?
Polymyalgia Rheumatica or PMR is a rheumatic condition which attacks twice as many females as males aged 55 and over. The average age of onset is round about 70 years. It affects roughly 1 in 1,000 people over the age of 50.
It can start slowly with flu like symptoms and it can start so suddenly that one morning you find you cannot get out of bed because you are so stiff and sore. Diagnosis is difficult because other conditions, e.g. rheumatoid arthritis, have similar symptoms. The Doctor makes his diagnosis on the basis of a blood test and other factors. Early morning stiffness which eases as the day progresses is a significant factor along with severe pain in the shoulders, thighs and pelvic area.
The most common treatment is initially a dose of Prednisolone, a steroid, which is reduced as quickly as possible because of the danger of osteoporosis if taken over long periods of time, along with treatment to avoid osteoporosis. The steroid treatment usually reduces the pain and stiffness quite quickly and often miraculously. This only controls the inflammation and is not a cure for the underlying condition. What it is not so good at is alleviating the unreasonable fatigue and pain that continues for some people.
Some people may find the condition burns itself out after 2 – 3 years but others may have to remain on steroids for longer. For a few it may recur after a period of remission.
What is GCA?
Giant Cell Arteritis, GCA or Temporal Arteritis is less common but usually affects the same group of people as PMR. You can have it without PMR but they often go together. GCA is characterised by severe headache, inflammation of the temporal arteries, pain in the muscles of the head, vision disturbance and sometimes jaw stiffness. It must be treated swiftly with a higher dose of Prednisolone than in the case of PMR because sufferers are at risk of going irreversibly blind and of having a stroke. It can also be characterised by unreasonable fatigue and pain and stiffness.
NHS Education for Scotland (NES) produced a number of booklets to cover various aspects of living with long-term conditions. These are no longer available but a copy of the one dealing with pain CLICK HERE. Note that this may not be current.
The term “medically unexplained symptoms” is used to describe a set of persistent physical symptoms (e.g. chest pain, dizziness, back pain) for which, after extensive investigation, there is no obvious underlying cause or diagnosis.
For those with persistent physical symptoms, the journey from symptom development to clear understanding and evidence-based treatment can be an arduous one. In an attempt to exclude more concerning underlying conditions, GPs often undertake a range of medical assessments and interventions. While necessary, these can cause patients to develop:
- unwanted psychological and physical side effects, adding to distress and disability
- beliefs about the nature and seriousness of their condition,
- Additional pain, fatigue and other symptoms due to pharmacological interventions.
In the absence of a clear cause or diagnosis despite persisting symptoms, patients can become increasingly distressed, while fear of what may be generating symptoms often leads to avoidance of daily activities. Further investigations may also place the patient at risk of harm, for instance, due to infection from exploratory operations, and exceeding safe doses of radiation.
ANYTHING TO ADD?
If you have anything you would like to see or have seen and would like to share, please email Secretary@PMRGCAScotland.com and we will take your views into consideration because this website is for you.