I wondered if you might be interested in a trial I am currently on for my rheumatoid arthritis – I have had the most amazing change in symptoms since being on it. After being diagnosed with rheumatoid arthritis about seven years ago, I have gone through the whole gamut of treatment through the years. I had accepted the fact I couldn’t work, was bone tired all the time, in pain all the time and just was not part of the rest of the world, and at 39 I was pretty worn down by it. I never gave up and I kept hoping that tomorrow would be a better day, but it never was.
Earlier this year, I was offered a chance to participate in a study of a 'mystery' drug that my hospital was offering and quite frankly, even if they had offered me snake venom at that point, I would have taken it.
I started the infusions monthly, with alternate monthly blood-ﬂow monitoring as part of the drug study...and slowly, slowly it has been like coming out of a coma. I am also taking weekly 20 mg methotrexate injections in conjunction with the new drug. I had lost a great deal of weight as a result of my rheumatoid arthritis and stress, and it has slowly started going back on and now I am a healthy weight and, best of all, I am mostly off the painkillers I was constantly using, including the effective but addictive fentanyl.
These days I actually wake up and feel like getting out of bed, am happy to be up and about and don’t constantly feel like a brittle old person. I feel like I could consider going back to (part-time?) work in due course if I wished, and life is beginning to resemble something like normality – it might take me a while to get used to that because after several years of that kind of pain it becomes a habit – it’s strange that it is no longer there to the levels it was – strange, but it’s good! I am even considering starting to ride my horse again. I found out last month the drug is tocilizumab (RoActemra) and the company producing it is Roche.
Month on month (and I am coming up to my eighth infusion) I have improved a little until last month my inﬂammation scores were practically non-existent – not completely gone, but as much as I could have ever hoped.
I’d like to say to people with rheumatoid arthritis who feel bleak right now that there is an option...it is SO worth asking the consultant and your arthritis nursing staff whether this drug would be an option. And take every day as it comes.
Stephanie, Cheshire (Winter 2009)
I read about the death of Professor Brennan in Arthritis Today and wanted to pass on my condolences and my heartfelt thanks for all the work she did for anti-TNF therapy. I was diagnosed with rheumatoid arthritis when I was 21 (I am now 47). I have had many ups and downs during the illness; but have a wonderful husband and two lovely children who are a real blessing. At one point after I had my second child the arthritis was agonising and I was housebound and in a wheelchair. Thanks to anti-TNF therapy, I have now got my life back. It is because of Professor Brennan and people like her that we are able to lead fuller and less painful lives.
Karen, Surrey (Winter 2013)
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