Living with PMR and GCA
Perhaps the most frightening feature of PMR (Polymyalgia Rheumatica) is the sudden onset of severe and often incapacitating stiffness, usually after a night’s sleep when unable to get out of bed. When diagnosed with PMR patients learn that the illness is likely to last for at least a couple of years, and steroids are the only effective treatment. GCA (giant cell arteritis) can be equally frightening, with sudden and severe headaches and the possibility of severe visual loss.
PMR and GCA are relatively ‘unheard of’ in the general community and those diagnosed usually know of no-one else suffering from it.
At PMRGCAuk we are developing a range of ways of supporting people with PMR and/or GCA. These include:
- Support Groups
- Helpline Support (this includes by telephone and email)
- Information Packs
- Membership of PMRGCAuk
There is a growing network of support groups around the country. Groups are run by volunteers, most of whom have or have had PMR or GCA. They meet regularly through the year and keep in touch with local people who may not be well enough to attend meetings. For a list of groups and to find out whether there is one in your area, click here. We are interested in developing new groups, so if you would like to be involved in a new local group start-up, please let us know straight away.
Although support groups operate independently, they offer similar things:
- Response to telephone and email enquiries.
- Help, advice and support for people with PMR and GCA, their family and carers.
- Time to listen to, encourage and support people.
- Sympathetic ear and reassurance.
- Information on PMR and GCA, medication, diet, etc.
- Regular meetings for people with PMR and GCA, their families and carers.
- Details of contacts across the UK.
- Newsletters keeping members abreast of new developments, forthcoming meetings, etc.
- Informal meetings to share experiences and have a chat over refreshments.
- Guest speakers at meetings, ie rheumatologist, ophthalmologist, dietician, etc.
We launched the helpline at the beginning of 2011. Currently we are getting about 50 calls a month on our dedicated number 0300 111 5090. We have recently set up a number that you can ring for general enquiries and information 0300 999 5090.
We also receive emails every day from people asking for information and advice. Often people just want to be listened to by someone who understands what they are going through. Sometimes we can help them by helping them work through a topic they need to discuss with their doctor; and sometimes people are calling or writing because they are worried about a relative and want to know more to be able to help them. Calls cost the same as a normal landline call and the helpline is staffed by volunteers who give their time freely.
When you have just been diagnosed with PMR or GCA it can be confusing dealing with the illness and the medication. We provide a free information pack to anyone who would like to know more about PMR or GCA. It contains useful leaflets published by Arthritis Research UK, our newsletter, information about steroid treatment and tips for living with these conditions. Just contact us by phone or email to request a copy.