PMR GCA Scotland
Support for Polymyalgia and Giant Cell Arteritis Sufferers in Scotland
CHARITY NAMEPolymyalgia Rheumatica and Giant Cell Arteritis Scotland (PMR-GCA Scotland) Scottish Charity No: SC037780.
Lorna Neill (Chair)
Harvie Findlay (Treasurer)
Michael Benneworth (Secretary)
Applications to become a trustee are always welcome
THE AIM OF THE CHARITYThe aim of the Charity is to provide support for people who have Polymyalgia Rheumatica and/or Giant Cell Arteritis, their relatives and carers by:
- Offering a point of contact for people who have Polymyalgia Rheumatica and/or Giant Cell Arteritis and their relatives
- Staying in communication with people coping with PMR and/or GCA who are unable to attend the meetings
- Helping members to keep abreast of current thinking and management of PMR and GCA
- Raising awareness of PMR and GCA
- Promoting research.
OUR STORIES AND YOURS
The symptoms appeared suddenly. One morning I couldn’t get out of bed. I had generalised acute pain. G.P. called and said I had Reactive Generalised Arthritis. I spent the next year taking anti-inflammatory drugs orally.
I read a booklet on PMR and demanded a blood test. Within 48 hours I was given oral steroids. I spent a year misdiagnosed and to date a further 2 years receiving correct treatment.
My initial concern was the suffering due to misdiagnosis by the GP.
My second concern is the lack of awareness of this long term medical condition in the medical profession.
My third concern was coping with the condition.
I could find no information as to how much research was being done either nationally or in Scotland.
As I already have Dystonia, another long term medical condition, I am having a challenging time.
PMR hit me suddenly, waking up one morning full of aches and pains and flu-like symptoms. These continued along with severe stiffness in my joints.
Not wanting to trouble the Doctor, and as we were in the middle of a stressful house move, I carried on and finally went for help to a physiotherapist who, after several visits (no improvement), informed me she could do no more.
I then went to see a Doctor who told me I had osteoarthritis and as I was about to go on a cruise to warmer climes “the sun will do you good”.
The holiday was a disaster and ended up with me being in agony and had to use a wheelchair to get me through the airport.
Same day saw a different Doctor who was most sympathetic, ordered blood tests and arranged steroids once the results came to light.
Symptoms improved then but over three and a half years there have been many ups and downs and unpleasant side effects from the steroids. However I no longer take steroids so there is light at the end of the tunnel!
PMR story In April 2018 I suddenly started having pains in my shoulder – first one and then both. I am normally very active – do a lot of gardening, don’t drive so walk a lot. I assumed I had been doing too much heavy lifting and sprained my shoulders so went to have physiotherapy which seemed to make things worse. Then walking became painful and tiring and I felt I was going rapidly downhill – but put it down to my age (80). The last straw was realising my arms and legs were too weak for me to get out of the bath! Eventually went to see a doctor, and after a few weeks and 2 blood tests was told that it was likely to be polymyalgia (something I had in fact heard of from a friend who suffered from this, so I was not entirely surprised.) I was given a short course of prednisolone 15 mg to see what reaction this had – a miraculous improvement, and I felt fit and more full of energy than ever, which showed the diagnosis was correct. So I was put on the standard decreasing regime of prednisolone, plus the usual extras for side-effects. It is still early days and I realise there may be ups and downs and the need to adjust the dosage when necessary. I was on the lookout for side-effects: one thing was an increase in the frequency of occasional severe night-time leg cramps that I had already suffered from for some years, but now I drink a glass of tonic water every evening which seems to help. The most alarming new thing though was attacks of severe pains in the back, chest, throat which felt like what I would expect from a heart attack. I had never had this before and wondered if it was due to the medication. The first time this happened it did wear off but I went to the doctor the next day for a check up and he sent me to Ninewells where I had a complete heart check. This showed my heart was fine, but the doctor there thought the problem could have been heartburn caused by a hiatus hernia (which I knew I had, but hadn’t made the connection) The reason I mention this is that after having had 3 more similar attacks I went to the doctor again and he gave me a fuller explanation: he said that it’s caused by acid reflux via the hiatus hernia, setting the oesophagus into spasm, the likely cause being the steroids. He changed my gastro-resistant medication for a different one, and also gave me some helpful advice from his own experience as he suffers from the same problem with hiatus hernia. (I was lucky to see this doctor, as at our surgery one seldom sees the same doctor twice!). He suggested smaller meals with snacks in between, to avoid attacks, and a hot-water bottle to ease the pain in future attacks. I have been fine since the new pills and following his advice. One other point I would make is about physiotherapy. A lot of folk in my position would do the same – assume it was a sprained muscle and embark on an expensive course of treatment which is no help at all – but shouldn’t a good Physio have been trained to enquire closely about all the symptoms and recognise the possibility of PMR in an elderly woman client? In retrospect I felt I was taken advantage of. S.M. Dundee. September 2018
On Mother’s Day 12th March 2001, my 38 year old son and his friend were the victims of an unprovoked assault when their heads were used as footballs and they were left unconscious in the gutter. A week later I spent 5 days extremely cold, wearing as many clothes as possible, closing all the windows and turning up the heating. My blood running cold? I am convinced that, for me, this was one of the triggers for PMR & GCA.
For the next 2 months I had spells of feeling tired and out of sorts but put it down to doing too much. In the middle of May I was tidying up after breakfast and said to my husband, “I’ll have to go and lie down, I don’t feel very well”. I thought I had flu with extremely sore bones, severe stiffness, a tube of pain through my head, feeling extremely cold in temperatures of 90° and a slight fever. I was on holiday in France and after 3 weeks I went to the Doctor who ordered a blood test and I saw a consultant in a fortnight who diagnosed PMR & GCA right away. As usual the effect of steroid treatment was miraculous as far as the stiffness and inner thermostat were concerned.
What I found most difficult was coming to terms with sudden loss of energy and unreasonable fatigue. I could walk for a few yards at a reasonable speed and then – nothing! I had to park the car on the same side of the road as the shop I wanted to visit because I couldn’t get across the road in time for the traffic. Living was like ploughing through a mental and physical fog wearing heavy boots, and this went on for years.
At the end of September 2003 I came off prednisolone, thought I was cured, and didn’t pay attention to 5 symptoms that appeared over the next 9 months. In July 2004 I went to the doctor thinking I had a chill in the bladder, another blood test which was as bad as the initial one in 2001. The unreasonable fatigue has been the worst symptom for me but since mid-December 2007 my stamina has returned. I am now down to 1mg prednisolone per day and hope the end is in sight. I can function for a whole day for the first time in nearly 7 years. There is light at the end of long tunnels.