Coping with rheumatoid arthritis

July 2016

Marjorie is 74 and lives with her husband in Madeley, Telford. She was diagnosed with rheumatoid arthritis (RA) 16 years ago, after a ‘sudden onset’ of the disease.

This is her story:

“I’ve always been quite active and fairly fit. I especially enjoy gardening and like to sew and decorate too. After moving house we’d been decorating and I woke up one morning with dreadful pain in my hands. There were no gaps between my fingers and I could barely move them. I thought I had done too much! I went to the doctors, who suggested I may have rheumatoid arthritis and would need blood tests straight away. I was shocked – saying ‘I can’t have, I’m a fit person!’

Just over a week later I was referred to a Rheumatologist, who saw me within seven weeks and confirmed the RA. He decided it needed to be treated aggressively and immediately to prevent long term joint damage and deformities. Looking back – I am very grateful for that decision.

The first drug treatment didn’t make any difference unfortunately. Mornings were awful. It could take half an hour to get out of bed and another half an hour to get downstairs. The next drug I tried did help a little, but the side effects made me feel like I had fallen into a ‘black hole’ with depression. This disappeared very quickly when the drugs were stopped and I have never been affected in that way since. I had to wear splints on my hands and also had hot wax treatments to release my seized fingers. The only shoes I could wear were trainers, which had to have special insoles made for them.

The third drug I had was methotrexate, which is a chemotherapy type (taken in a lower dose). You need monthly blood tests because it can affect your white cells, liver and kidneys. After 18 weeks it did work, I was in less pain and had more movement again.

It was effective for six years, but then the side effects became severe and it just stopped working. RA often finds a way around the disease – modifying drugs.

At this stage the rheumatology service was moved from the hospital to a community clinic and my consultant moved to another hospital, so I asked my GP if he would refer me on to my old consultant, who had known me for 10 years. It is very important to have continuity when living with a serious long term condition. It was then that I was started on a ‘biological’ treatment developed by Arthritis UK about 15-20 years ago. My consultant had to have approval for funding from my local CCG – luckily – they agreed and I started treatment in March 2010.

It quickly changed my life, from having pain all over my body (and limited movement) to having the quality of life that I have now. Almost back to pre-RA!

The treatment comes in the form of a simple, pre-filled injection pen, used every two weeks.  From a financial point of view, on balance, it would probably cost more in the longer term to be on a cheaper drug. I may have needed a wheelchair with adaptations at home, more care, more aids, more drugs for pain relief – and more hospital and GP appointments.

The only appointments I have now are with my consultant and specialist biologies nurses for annual rheumatoid and medication reviews.

I go to my GP practice to have my blood tests, which are now every six to eight weeks instead of monthly. They fill in my personal record book so that I always have my results with me, in case they need to be seen.

I feel very lucky to be so much better and to have such wonderful support from my consultant and GP practice.

More recently I took over the local RA support group. The biggest benefit of being involved in the group is being in touch with one another and sharing information and experiences. The CCG is very supportive by providing us with a meeting room every month. People don’t always know what support and help is available and can feel very isolated.

I do find that most people don’t understand that RA is an immune system disease – and not about joint wear as in osteoarthritis. It is also important to understand that everyone’s RA is different, so how it is managed is going to be different too.

Facts about rheumatoid arthritis

  • Rheumatoid arthritis is an autoimmune disease where the immune system,  instead of protecting, attacks the joints.
  • Symptoms include:
    - Severe pain and inflammation in the joints
    - Stiffness
    - Chronic fatigue
    - Anaemia
    - Flu-like symptoms (generally feeling ill, hot and sweating)
  • Around 10 million people in the UK have a form of arthritis – of which 700,000 have rheumatoid.
  • ‘Flare-ups’ of the illness can be very debilitating if it is not kept under control with suitable treatment
  • Rheumatic arthritis can cause deformities so severe that those who suffer from it cannot bathe or dress themselves, while a simple task such as walking can be difficult or even impossible. 
  • It is more common in women than men, and is most likely to start between the ages of 40-50. (Although it can affect much younger people as well).