Rheumatoid Arthritis

Some of the people we interviewed had lower limb surgery and talk about their experiences here. 

An important thing to bear in mind is that nowadays medication taken soon after diagnosis can slow the progression of joint damage and lessen the need for surgery. Disease Modifying Anti-Rheumatic Drugs (DMARDs) and biological treatments (anti-TNF therapy, rituximab and others) have made a big improvement to the way rheumatoid arthritis can be treated. These drugs tend to stop the gradual destruction of bones and joints and reduce the need for surgery. For people who have had RA for a long time (before these drugs were available) surgery may still be needed as the damage to bones and joints has already been done.

Joint deterioration in the legs decreases walking distance and could be painful. Operations reduced pain and most people could walk well again after they had recovered. Crutches were sometimes a problem because of pain and damage in arthritic arms. Forearm crutches, supporting the weight from the elbow to wrist, are often used rather than shoulder or elbow crutches. Some people used a Zimmer frame for a short while.

A number of women we interviewed had had bilateral hip replacement or one hip replaced. Some of of these women had juvenile chronic arthritis and had had the operations aged between 19 and 36. A couple more women over 50 were awaiting hip replacement at the time of interview. Their symptoms were increased groin/hip pain, loss of sideways movement and limping; one had to use a wheelchair. 

Several of the women had waited years to have the replacement surgery as surgeons had told them that as they were young and the artificial joints had a limited lifespan, they would inevitably need further replacements so it was better to wait. In hindsight, one woman felt that her life had been on hold for many years and her level of mobility had declined. One woman described the recovery from the operation and how she had learnt that people with osteoarthritis recovered faster than those with RA.

Pain after the operations was significant but, after several days in hospital to make sure they could walk, most people went home to continue their recovery. One woman found it hard to adjust to returning home and being able to walk after being in a wheelchair before the operation.

Operations on knees included clean outs and joint replacements. Two people had undergone synovectomy, one also had a radioactive isotope (Yttrium) injected into the knee joint to remove any inflamed synovial tissue and another described a 'wash and brush up' (an arthroscopy). Five women had had both knees replaced; two chose to have these done simultaneously (one said she had underestimated the pain involved), and a sixth person had had one knee replaced. Two chose to have these under spinal block/epidural anaesthetic rather than a general anaesthetic but one said she had not been warned that this could make her incontinent for a few days, which she found difficult.

One 78 year old had had a very early knee replacement in the 1960's - only the third carried out in the UK. It was unsuccessful, leaving her with a bent stiff knee. The later replacement of the other knee lasted 30 years but only gave 15 degrees of bend. More recent knee replacements gave between 60 and 105 degrees of movement, reduced people's pain, although not always completely particularly if they were in flare, and enabled them to stand up straight and walk better. One woman was disappointed because she could no longer go up steps by herself or get up from a dining chair without help and she had a further operation and more physiotherapy to try and improve the movement.

Exercise is important and recovery time was quoted as being 3 weeks with crutches and then two people said they were driving again by 5-6 weeks after. One young woman's femur was broken during her fourth joint replacement, a knee, so she was in plaster for 4 months.

Fusion was the most common ankle operation, but one person had had a bone removed and another had both ankle joints replaced. Ankles that were very painful before were often pain-free after all these operations, but movement was limited to up and down and not sideways or rotation. One man describes his operation and recovery. Two people had chosen to let their ankles fuse naturally rather than surgically.

Several people had had some form of foot surgery - to remove sections of bone, to straighten hammer toes by fusion or pinning, repair toe joints with plastic inserts and one woman, many years ago, had eight toes removed. Some people were very pleased, achieving better function and less pain. Two women felt foot surgery was a last resort if the pain became unbearable but because the bones in the feet are complex, they felt they might be worse off unless the surgeon was a specialist. One woman had experienced this and described several operations on her feet which still hadn't resolved the problems. Problems with feet sometimes needed special shoes to be made (see 'Other hospital specialists').