My experiences on tocilizumab

I was first diagnosed with rheumatoid arthritis in September 2009. Looking back I had been experiencing symptoms for a few months. I started to get pain in my feet and toes and standing out of bed in the mornings was agony, almost as if I had stood on glass. As a regular gym user I put the pain down to overdoing the aerobics and I even replaced my training shoes as I thought maybe this was contributing.

Whilst away for the weekend with my sister, she asked me why I was walking down the stairs like a child, putting both feet on every step. I had become used to using stairs like that and I told her it hurt my feet to climb or go down stairs. She urged me to go to the doctors to find out what the problem was. I didn’t go but then started to wake up each morning with very stiff fingers and wrists. Despite being trained as a nurse and nursing lots of patients with RA, it never crossed my mind that the symptoms I had been experiencing were due to arthritis.

I finally made an appointment to see my doctor, described the symptoms and was sent for a blood test the next day and x-rays of hands and feet. The GP told me afterwards that he was nearly 100% certain that I was suffering from rheumatoid arthritis. I was given an appointment to attend a clinic at the health centre, but less than a week after having the blood test I received a letter to see a rheumatology specialist at Aintree Hospital, Liverpool. The care that I received from my GP and the speed of the referral was excellent.

SuzanneFollowing a visit to the consultant, I was told that I had inflammatory arthritis and was started on arthrotec. This didn’t work and my symptoms progressively got worse, with awful pain and a significant increase in morning stiffness. I attended the hospital various times over the next few months and started on hydroxychloroquine and methotrexate. The pain at this time was unbearable and I would take my children to school and come home and lie in a hot bath. I was having 3 or 4 baths a day, even throughout the night. The rheumatology nurses would tell me to put an ice pack on my inflamed joints, but the only relief I got was from soaking in a hot bath. I constantly felt cold and lethargic, and my appetite decreased. I was given a wrist support and was quite depressed about having to wear it, especially on Christmas Day – it didn’t match my new outfit!

My sister came over from Guernsey with her 6 month old baby, and holding her was agony. I was unable to pick her up whilst I watched my other sisters throwing her in the air. That was when it hit me what an awful illness this was. My own children were 3 and a half and 5, and even though my husband and I had no plans to increase our family, the realisation that I wouldn’t be able to care for another baby was hard. It was hard to stay positive at this time but I wasn’t going to let this illness beat me.

Over the next few months my medication was gradually increased and I had quite a few steroid injections to try to control the inflammation. My methotrexate was increased to 25mg and I was started on sulfasalazine. The stiffness started to reduce and I began to feel better. I was able to fill a kettle with one hand again and change gears in the car without being in agony.

In Sept 2010 I was approached by one of the consultants and asked if I wanted to participate in a trial being run at the hospital. The drug was called tocilizumab and the trial was looking at the drug and the effect on neutrophil count. One of the research nurses sent me all the information and I did my own research into in on the internet. If I was interested my suitability would have to be discussed with one of the doctors. I decided that it was worth trying and attended a consultation. I was accepted onto the trial and started to notice an improvement almost immediately. 

I attend the hospital once a month and receive the drug through an infusion. The improvement since I started the drug is massive, and the best news I received, nearly 2 months ago, was that I am now in remission! I have been able to return to the job that I love and have started nursing again. I am back at the gym 3 or 4 times a week and am enjoying classes such as body combat. My 2 boys must notice a difference as I am now able to play football with them or play-fight without them worrying about knocking ‘mummy’s’ sore hands.

I have a few more months on the trial and hope to get funding to stay on the drug when the trial finishes. The improvement to my life has been enormous and sometimes I even forget that I have RA. I do sometimes find it hard to accept that I have this disease, but all the support I have had has been fantastic. My wonderful husband Neil has been amazing, especially at the peak of the disease. My family have been a constant support and help out whenever I need it. 

What the future holds for me and my RA, I do not know. Today I feel great, I hope it is the same tomorrow and the days to come.

Autumn 2011: Suzanne Fleming