My Experience with Anti-TNF Therapy

Autumn 2010: Anne-Louise Ingham nee Johnston, NRAS Member

I was diagnosed with Rheumatoid Arthritis at 21, in the middle of my university finals. I was pretty devastated as my father developed the disease in his 50s and I had some idea of what I could expect. Nevertheless, for about 7 or 8 years I only had it in my hands, wrists and elbows, so, initially, it was not as limiting or painful as it could have been. The main difference to me was buying an automatic car and an electric toothbrush as I couldn’t change gear or brush my teeth without significant pain.  I also had an Occupational Therapy home assessment and managed to get a number of gadgets to make life easier around the house.

Then the inflammation spread to my neck, jaw, knees and feet. The pain steadily became unbearable at times and I couldn’t even straighten my knees; I was walking like a cross between Quasi Modo and Herr Flick - not good!

Over the years I had been prescribed the DMARDs (hydroxychloroquine) and later methotrexate. The levels of inflammation in my body were so high at one point that my ESR was over 120! I had resigned myself to a life of pain and reduced mobility and, only in my late 20s, was considering getting a bath lift installed. Finally, after sending me to hospital for 2 weeks of bed rest, joint injections and hydrotherapy, having met the criteria for trying an anti-TNF as 2 DMARDS had not worked and I had such a high ESR, I was finally prescribed etanercept (Enbrel). This made a tremendous difference. After a few months on this treatment I was virtually pain free and it seemed to have even reversed some of the inflammation in my joints. I could now go for 7-8 mile hikes and just have a bit of stiffness the following day! Unbelievable! Unfortunately, I then had a psychotic episode and was taken off etanercept to be on the safe side, in case this had caused it. I was then put on adalimumab (Humira), another anti-TNF, which fortunately was just as beneficial. I came off adalimumab in January because my husband and I were trying for a baby and I was advised to stop taking adalimumab 3 months before starting to conceive.

By the time July came around, apart from a couple of quite painful flares which only lasted a couple of days each, I had been pretty much pain free.

In the summer of 2009 I finally fell pregnant, but unfortunately miscarried at 21 weeks. My arthritis also came back and I had to have 4 steroid injections in my knees. It was then that my rheumatologist advised me to go back onto adalimumab until I fall pregnant again…..fingers crossed!

The difference anti-TNF therapy has made to my life has been fantastic and I think I have been very lucky as it is not as beneficial in all cases.