Drugs hints and tips

It might interest your readers to know I have recently been put ontocilizumabinfusions as part of a甲氨蝶呤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

我很惊讶地读到哈利的来信。他写的与我的经验相同。我也刚刚进行了两次tocilizumab。我的血液检查还表明我的CRP降至1，而ESR也只有2。我也像多年来一样服用甲氨蝶呤。我了解我偶然地进行了六次输液，也许和哈利一样。我确实感觉好多了，尽管我在忙碌的一天结束时仍然感到非常疲倦，但我知道。是“野兽的本质”，我必须自己步调。我也要感谢您的组织，这使您通过您的宝贵研究使这种治疗成为可能。

Penelope, via email - 2014

I was diagnosed with多肌痛风湿病（PMR）by my GP and sent immediately to a rheumatologist. I had two bouts of巨细胞动脉炎（GCA）during that time and took prednisolone (a steroid tablet) in varying degrees. I was then started on leflunomide, a drug usually given forrheumatoid 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.

埃尼斯，赫特福德郡 - 2013年

Tocilizumab

I wondered if you might be interested in a trial I am currently on for myrheumatoid 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.

我每月开始注入液，作为药物研究的一部分，每月进行一次每月的血流监测……慢慢地，就像昏迷一样。我也每周服用20毫克甲氨蝶呤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 istocilizumab（Roactemra）和生产它的公司是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.

斯蒂芬妮，柴郡 - 2009年

我在2007年被诊断出患有退行性椎间盘疾病，一年后在脖子上置换了椎间盘。我的腰椎有三张受影响的椎间盘。在过去的三年中，我的手，脚，脚踝，膝盖和臀部有严重的关节疼痛和炎症。在过去的四个月中，我只六次上床睡觉。我无法坐，站立或走路。我的风湿病学家说，这是一种炎症性关节炎。

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