Pearl - Interview 62
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Pearl was diagnosed with rheumatoid arthritis (RA) in 1991, aged forty and was put on methotrexate. Eighteen months ago and initially as part of a clinical trial, she started to take a newer anti-TNF therapy; Simponi. Her current treatment also includes methrotrexate, but in a smaller dosage.
Pearl is married with two grown up sons and a grandchild. She is a retired bank clerk. She had to take early retirement due to rheumatoid arthritis.Ethnic background' White British.
More about me...
Pearl was diagnosed with rheumatoid arthritis (RA) in 1991, aged forty and was put on methotrexate oral-form. She has taken this treatment ever since but now she takes it in injection form as it began to affect her stomach. Alongside methotrexate, Pearl has tried other medications such as leflunomide and sulfasaladine but no single, or combination therapy succeeded in controlling her RA. Pearl would feel fine for a couple of weeks and then pain would start to affect her. Furthermore, every twelve to fifteen weeks she would experience episodes of very painful and debilitating flare ups that left her being unable to move. The flare ups affected her jaw, ankles and shoulders. This pattern of having short periods of feeling well followed by severe periods where she couldn’t be able to do anything remained constant since her diagnosis until she started her Simponi treatment.
Pearl was invited by her rheumatology clinic to volunteer for clinical trials and waited for 18 months before she had the chance to take part in the Simponi (golimumab) trial. She said she was given all sorts of information about this new drug by the specialist nurse, but was still very concerned about side effects and therefore, undecided. She spoke to her consultant, who answered all her questions and explained what they so far knew about the potential side effects of Simponi. Afterwards, she felt reassure and decided to go ahead.
The Simponi trial period lasted twelve months and during that time she had to go to the hospital to have her monthly injection and checkups. Now, she receives a monthly delivery of the Simponi at home and she injects herself. In terms of follow-ups she now goes to the clinic once every week for her methotrexate injection and once a month for blood tests. Soon after she started on Simponi, her methotrexate was stopped because her liver was affected by her combined therapy. It is only recently she has been put back into methotrexate but at a lower dosage. Liver tests are fine.
Blood tests results are showing that the level of joint inflammation has gone right down but Pearl is not yet in remission. Since starting her Simponi treatment, Pearl has not had repeats of the very bad flare ups she used to have. She still experiences various levels of pain but she feels able to cope with it. Moreover, she is not as exhausted as she used to be and hence, able to have a social life in the evenings.
Pearl thinks that the care and support she gets from her consultant and nurses is second to none but she advices doctors to talk to their patients about the possible impact of RA on sex life. She thinks that such an issue should be discussed early on to help couples better understand and manage this aspect of their lives.
Pearl explains how her participation in a clinical trial for Simponi (golimumab) came about.
Pearl explains how her participation in a clinical trial for Simponi (golimumab) came about.
After the clinical trial finished, Pearl started receiving regular deliveries of her anti-TNF medication at home. She does not recall PCT funding ever been an issue.
After the clinical trial finished, Pearl started receiving regular deliveries of her anti-TNF medication at home. She does not recall PCT funding ever been an issue.
Do you know if you are still on this trial or you are past the trial period now?
Pearl describes the quality of care she receives at her anti-TNF clinic.
Pearl describes the quality of care she receives at her anti-TNF clinic.
Yeah you can see the rheumatoid nurse. You can make an appointment yourself. You can see her any time. You can ring up or you can ring and for, you know, advice or, you know, if there is any problems you can always ring. So you’re not stuck on your own, you know. You can always ask questions and yeah.
Pearl indicates that since starting on anti-TNF therapy she has more frequent colds and has to take antibiotics to get better
Pearl indicates that since starting on anti-TNF therapy she has more frequent colds and has to take antibiotics to get better
I do get chest infections [cough] a lot. Excuse me. That’s the only thing, rarely, you know. I think it’s with the low immune system they say you pick, you’re picking infections up.
Pearl thinks that the issue of sex after being diagnosed with RA can affect relationships and should be discussed by doctors. It is an important subject, and in her experience, neglected by health professionals.
Pearl thinks that the issue of sex after being diagnosed with RA can affect relationships and should be discussed by doctors. It is an important subject, and in her experience, neglected by health professionals.
I think they should know that it does affect you socially and it does affect you mentally. You know, you do get depressed. It’s not just a pain. I think there’s those options to it. I don’t think a lot of doctors realise that it affects your life. It does affect your life. It’s not just you’ve got a sore leg or arm it does affect the whole of your life and relationships with your family and such, even with your husband, you know.
Pearl's employers provided her with what she needed to work around her RA but she decided to take early retirement. It was just too difficult to cope with full-time work and RA.
Pearl's employers provided her with what she needed to work around her RA but she decided to take early retirement. It was just too difficult to cope with full-time work and RA.
I used to work. I gave up work through the rheumatoid but I used to work full time as well and I found it extremely, you know, really hard. It was going to work, coming home and going to bed and then going to work. It was one of those, you know.