It all started with a pain in my right wrist.
I put this down to lifting and carrying Magnus, my eight month old baby, around but as time went on my hands started to swell up and I had pain in both my feet. I initially put the pain in my feet down to wearing a pair of boots that I hadn't worn for a while.
However, it soon became apparent that the pain and swelling in my hands and feet was something more serious. I was in constant pain, getting out of bed was a struggle, pulling on clothes, opening shampoo bottles, jars of food, milk tops; everything was so difficult and painful. I was in tears most mornings and was overwhelmed with fatigue. I was working part time as a marketing executive so getting to work and carrying out my usual duties was a struggle. Initial blood tests at my GP practice ruled out any disease activity but after two more appointments, I was referred to see a rheumatoid specialist at the local hospital. The rheumatoid consultant confirmed that I did have RA. I was devastated and didn’t know how I would cope looking after my very active 16 month old son. My granny had rheumatoid arthritis and her hands were so badly affected they were deformed. My immediate thought was ‘I don’t want to end up like granny’. I was only 31 years old and a busy working mum with a young son to look after.
My consultant was brilliant and started me on a blind trial where I was given either tocilizumab or methotrexate or a combination of them both. Unfortunately, after 6 months on the trial my symptoms were not improving so my consultant decided to take me off the trial and started me on triple therapy of methotrexate, sulfasalazine and hydroxychloroquine. During this time my joints were very swollen and painful. I had a couple of steroid injections which relived the pain slightly but not significantly. Getting myself dressed was agony enough but I also had to dress, feed, change, bathe, play with and run around after Magnus. I felt very low and cheated of being able to do all the things other mums were doing. It was at this time that I spoke to someone via the NRAS telephone peer to peer support service. The person I spoke to was a mum to 2 children and had RA prior to pregnancy. This phone conversation really helped me feel like I wasn’t alone and gave me hope that things would get better.
I was a keen cyclist before RA and had cycled a number of long distance routes across the country. I did one long distance cycle ride with my friend during this time and managed only with a huge amount of support from her including helping me get dressed in the mornings. After that ride I knew I had to put my cycling on hold temporarily as I didn’t want to risk any long term damage to my joints. I remember my consultant saying to me that his aim was to get me back on my bike and this gave me some hope.
After 6 months on the triple therapy it was obvious it wasn’t working and so I was referred to see the biologic specialist at the Freeman Hospital in Newcastle. In October 2011 I started on Enbrel (in combination with methotrexate) and within 2 weeks I noticed the difference. The inflammation began to decrease and I was able to do everyday tasks without being in unbearable pain. Within a couple of months I felt like I had gained some of my previous life back. I could run around the park with Magnus, push him on swings, and ride my bike again without being in agony; things I took for granted before RA.
My husband and I had always wanted another child but knew that I needed my RA to be in remission before we even considered it. After 6 months of being in remission on Enbrel and methotrexate combined and in discussion with my consultant I decided to stop taking methotrexate and see how my body coped. My RA remained in remission during this time and so we decided the time was right to plan for another baby.
Iona was born on 27th October 2013. During pregnancy my RA continued in remission and I didn’t take any medication at all. I felt great! I was monitored closely by my consultant and also a rheumatologist who specialises in RA during pregnancy at the Royal Victoria Infirmary hospital, Newcastle. I enjoyed a normal pregnancy and birth. I was also able to breastfeed for 6 months, something which was very important to me and during this time my RA remained in remission. When I stopped breastfeeding I felt my joints beginning to swell and become painful so I started back on Enbrel. I was also returning to work at this time.
My RA is still in remission and I am able to enjoy activities like cycling and walking. Last August we had a family holiday in Wales and I managed to climb Snowdon – a real sense of achievement. I do still get some pain and swelling in my joints, especially my wrists and hands, and find changing nappies one of the hardest things! But compared to where I was a few years ago I am a different person with a much better quality of life.
My family and friends have all been very supportive and understanding of my RA (my brother has ankylosing spondylitis) and I couldn’t have coped without their constant encouragement and positivity. My husband, Matt, has been extremely supportive and helps enormously by doing the majority of household duties - tasks I struggle with. Magnus is now 5 and understands that sometimes I can’t do certain activities due to my RA. As a family we enjoy an active lifestyle and with my RA in remission, I am able to continue leading that lifestyle with some adaptations.
My consultant (Professor Isaacs) and other members of the medical team at the Freeman Hospital (notably Karl Nichol, Biologics Nurse Specialist) have been fantastic. From day one their aim was to help me to lead the lifestyle I had led before RA and I feel together we have achieved this aim.