Pat – Interview 59
Pat was diagnosed with rheumatoid arthritis aged 25 but it took almost three years and a progressive deterioration of her symptoms for her to get an appropriate treatment. Her disease has remained active and to date she has had ten operations and four implants. Pat participated in a clinical trial for a newer drug called Golimumab (Simponi) but the therapy failed to improve or control her rheumatoid arthritis. She is due to start another biological therapy; Rituximab.
Pat wrote her own biography
Just six weeks after her first daughter was born, Pat then aged 25 started having difficulties moving her arms and knees and trying to walk. She went to her GP who put the symptoms down to just being a new mu. The stiffness of the joints, pain and a general feeling of being unwell continued. The initial consultant she saw diagnosed her with mild Rheumatoid Arthritis even though her fingers had already started to bend, but gave her no treatment.
The next few years were unbearable with the pain and fatigue, and now also having a small child to look after. Pat went back to see her GP who instantly referred her to another consultant. So it took nearly three years and a progressive deterioration of her symptoms for Pat to get appropriate treatment. Her consultant started her on Penicillamine, but her kidneys were affected by it. She was then put on Gold Injections. Since 1985 until 2010 her main medication has been Methotrexate.
Pat’s Rheumatoid Arthritis has remained active and over the years it has affected her in different ways. At the age of thirty, Pat’s ability to walk was very limited, as the disease progressed she could only manage 10 or 20 yards at a time, she found this so upsetting as she could not even go to the park with her young daughter, and became virtually housebound. In 1988 age thirty Pat had a hip replacement. Her disease continued to be active causing a great deal of damage to her joints. Her hands and fingers started to twist.
From 1997 to date of interview (5th October 2011) she has had ten more operations including four knuckle joint replacements and one ring finger replacement, and other corrective surgery on both feet. Pat indicates there are short periods in which she feels fine but knows that the disease is still very active and then discovers another bent finger or a nodule on another joint.
In 2010 Pat was invited to take part in a twelve month clinical trial for a newer drug called Golimumab. She met the criteria’ her disease was active despite having tried other medications. She had one auto pen injection of Golimumab each month, givenat home by her husband for a period of six months. After the six injections, if the trial participant still met the criteria they either continued treatment at home for a further six months or were given the drug by an infusion administered at the hospital. This was decided by the trial study team. Pat was chosen to have the infusion for the remainder of the trial. Pat said unlike the autopen injection the infusion gave her bad headaches.
Pat said she felt and looked well while in the Golimumab trial, but at the end of the trial the test results revealed that the new drug was not controlling the disease as they hoped and she felt that the unknown long-term side effects of Golimumab were too high a risk for her to continue. But worse, she said, was about five or six weeks after she stopped the drug her flare up started.
She could hardly walk again or go out and said it just felt like 29 years ago when it all first began. Pat was due to start another biological therapy; Rituximab, but she had a foot ulcerated ulcer and had to wait for this to heal. She had had this ulcer for over six months, which caused walking problems, and attended foot treatment clinics each week. The main reason why the ulcer did not heal was the joint damage on her foot and the pressure on walking. Pat was due to be a grandmother for the first time and did not want to spoil her experience by having a flare up or a reaction to Rituximab.
One thing Pat got from the clinical trial experience was a better understanding of Rheumatoid Arthritis. She indicated that no health professional before had fully explained her condition to her and the damage not only to joints but to your internal organs as well. Pat was told that probably the nodules she can see on her hands and feet are most likely to be on her internal organs too. She says this is worrying her now. Besides one of the doctors who assessed her at one of her monthly visits while on the trial drug was puzzled as to why Pat had not been offered before another already licensed treatment such as Rituximab.
For almost thirty years, pain has been very much a part of Pat’s everyday experience of living with Rheumatoid Arthritis and it has affected her life in several important ways. She obviously did not know she would have this disease after her first baby was born and how it would destroy any kind of normal life and the joys of being a mum. For example, she was never able to do the things other mums did like helping with school outings and so on.
Although she loves her daughters very much, she wished at the time of discussing having a second baby that medical professionals made clear the serious health problems of having Rheumatoid Arthritis and the effects it would have on her mobility etc. She says it is not easy and felt a burden to all the family. She now feels guilty about having another child because she could never be the type of mum she wanted to be for her children. Pat said in her interview that if this is a hereditary disease and her girls were affected she would find this very hard to live with.
As a wife Pat is aware that it could not have been as she put it much fu for her husband. To cope with someone who is suddenly classed as having a disabled wif, who was so restricted at times, often crying with severe pain and very irritable at times and in need of practical help and support. Pain, fatigue and lack of sleep has also affected her emotional well-being, she has had anti-depressants on rare occasions. Her husband and two very close friends of hers provide the practical and emotional help and support she needs.
Additional information April 2012
October 2011, Pat now has a lovely grandson.
Pat started her new therapy Rituximab, and had the first infusion in November 2011 and the second two weeks later in December 2011. She said she is feeling alright at the moment and does not seem to have experienced any major side effects.
In February 2012 Pat had surgery on her foot to try and help with mobility and to heal the ulcer. All toes were fused and realigned, she feels there is some improvement and the ulcer is beginning to heal after a period of 10 months.