Tips on biological therapies
It might interest your readers to know I have recently been put on tocilizumab infusions as part of a methotrexate taper trial after methotrexate started to lose effectiveness. I felt the difference almost immediately (inside two weeks) and my first blood test showed C-reactive protein (CRP), a test to measure disease activity, and erythrocyte sedimentation rate (ESR), another diagnostic test that shows the level of inflammation, of 1 and 2 respectively. Now after a couple of infusions my disease activity score (DAS) is less than 1 and I'm in remission. Nothing I can say or give can do justice to the work of organisations like yours and companies like Roche that have made this possible.
Harry, via email - 2014
New biological therapy is making a big difference to my condition
I was amazed to read the letter from Harry. What he wrote is identical to my experience. I also have just had two infusions of tocilizumab. My blood tests also show my CRP is down to 1 and ESR also down to just 2. I also take methotrexate as I have done for years. I understand I am on a course of six infusions incidentally, maybe the same as Harry. I do feel better, although I continue to feel very tired at the end of a busy day, but that, I know. is ‘the nature of the beast’, and I must pace myself, I’m told. My thanks also to your organisation, which makes this treatment possible through your invaluable research.
Penelope, via email - 2014
Tips on drugs for polymyalgia rheumatica
I was diagnosed with polymyalgia rheumatica (PMR) by my GP and sent immediately to a rheumatologist. I had two bouts of giant cell arteritis (GCA) during that time and took prednisolone (a steroid tablet) in varying degrees. I was then started on leflunomide, a drug usually given for rheumatoid arthritis. I was fortunate that it helped me as I am now almost completely free of something that had taken over my life – although at the start it caused awful side-effects until my body got used to it. I then had to come off the prednisolone gradually and am now down to 1 mg, and I hope to be completely off it soon. If this can help somebody else I would be delighted.
Eunice, Hertfordshire - 2013
Tips on drugs for rheumatoid arthritis
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 - 2009
Tips on steroid injections
I was diagnosed with degenerative disc disease back in 2007 and had a disc replacement in the neck a year later. I have three affected discs in the lumbar spine. For the past three years, I have had major joint pain and inflammation in hands, feet, ankles, knees and hips. For the past four months, I have only made it upstairs to bed on six occasions. I have not been able to sit, stand, or walk. My rheumatologist said it is an inflammatory arthritis.
I had a steroid injection on Thursday, it was painful on Friday, but has been absolutely fantastic ever since. I can now get into a car, I went shopping yesterday for the first time in six months, I even went for a meal last night. I feel normal! I am being positive for the first time in years!
Andrea, Stockton on Tees - 2012