Pollyanna Penguin’s RA Blog
This is a blog about me, my recently diagnosed rheumatoid arthritis and my struggles to stay positive about it!Archive for DMARD
A real breakthrough in RA treatment? Maybe!
Could the news that rituximab (MabThera) can provide dramatically improved results in patients with early rheumatoid arthritis be a real breakthrough at last? The thing I find most encouraging about the research, carried out by Prof. Paul-Peter Tak from the University of Amsterdam, is that it’s research based on a drug that’s already out there in the market, not something we’ll have to wait ten years for approval for.
Tak (which means thank-you in Norwegian, something many of us might want to say to him if this research is taken through into treatment) showed that treating patients early with rituximab and methotrexate in combination, can virtually stop the disease in its tracks. The 755 patient trial of recently diagnosed patients, most of whom had suffered the disease for less than a year, showed that nearly 2.5 times as many patients on the treatment went in to remission, compared with those treated with methotrexate alone.
Of course, like all RA treatments (to date, anyway) it doesn’t work for everyone, and so far the investigation has only been on recently diagnosed patients, but it certainly sounds encouraging. At the moment in the UK rituximab is only prescribed after failure of anti-TNF therapy, but NICE might actually take this option seriously as the cost of rituximab is about a quarter of an anti-TNF so it makes economic as well as medical sense to try rituximab first.
Here’s hoping NICE do something sensible for once!
New NICE guidelines on RA
Well it seems that NICE (the ironically named and aforementioned National Institute for Clinical Excellence in the UK) have done an about face on their original ‘if you try one anti-TNF and it doesn’t work, tough. You can’t have another one, ner ner ne ner ner’. They’ve released new guidelines which are actually very positive. Of course it doesn’t mean that all rheumatology departments will agree with or follow their guidelines but I suppose it’s a start. Here are some of the positives (IMO), and it’s only a very select few that resonated with me:
- Newly diagnosed people should be offered a combination DMARD therapy straight away, including methotrexate, ideally within three months of persistent symptoms. Well I don’t think I know ANYONE in the UK that was diagnosed within three months of persistent symptoms, let alone given the combination therapy option, but I’m glad if that’s going to change.
- A level of what is acceptable disease control should be agreed with the patient in advance and worked towards. HA! I’ll believe that when I see it. The nearest we come to discussing acceptable levels is ‘Really you’re not too bad. I see much worse people in here every day.’ Well yeah, and there are people much worse off than me in Africa, and indeed round the corner, but that doesn’t mean I have to be content with my lot!
- Quoting direct from the NRAS site (www.rheumatoid.org.uk) “People with RA should have access to a multidisciplinary team (MDT); this should provide the opportunity for periodic assessments of the effect of the disease on their lives ( such as pain, fatigue, everyday activities, mobility, ability to work or take part in social or leisure activities, quality of life, mood, impact on sexual relationships) and access to a named member of the MDT (for example, the specialist nurse) who is responsible for coordinating their care.” Well yeah, I have access to a multidisciplinary team. Like any team, some are fabulous (physio that I see now, occupational therapist, even if we don’t share a sense of humour, rheumatology nurse at the GP surgery), and some aren’t. One that isn’t is the one who would no doubt be ‘coordinating my care’, gawd help me, if that happened; the RA Nurse Practitioner at the hospital. I can imagine quite vividly what her assessment would be like. She would read off a form in a board voice, ‘Are you depressed? No? Good. Do you have sex? No? Good.’ And of course what’s required is that thing they don’t have time for at hospital, a CONVERSATION!
And don’t get me started on the patient guidelines – well, if you know me you know I will no doubt get started on the patient guidelines when I have time and feel up to it, but just for now I’ll say they’re absolutely appalling, patronising, insulting …you get the idea. I asked Arthritis Care for a copy. They were wonderfully efficient and friendly and sent me a copy return post, but having received them I took one look and went straight to the NICE website to find the health care professionals’ version – THAT actually told me things. I am sorry I caused paper and Arthritis Care money to be wasted. The patient guide had lots of nice white space and simple bullet points that told me that as a patient I should definitely have the right to treatment, possibly with drugs. (OK, I exaggerate, but thin doesn’t even begin to describe the level of information!)
Here’s a a link to the patient guidelines if you want a laugh or cry. And here’s a link to the healthcare professional guidelines if you actually want some information.
I’m probably being a bit harsh, but it surely can’t be that hard to have something really, really simple with links or (see page whatever) if you want further detail, instead of assuming all patients are clueless. It’s as bad as the hospital rheumy nurse giving me the very useful methotrexate book and saying, ‘but really there’s more information here than you need’. I think I should be allowed to decide that.
A ‘one injection’ cure for Arthritis within five years … well, let’s hope so!
Some great news was widely reported yesterday – there might be a cure for rheumatoid arthritis and it could be tested and available within five years. No disputing it, that is great news! But a word or two of caution …
Unlike a drug, this treatment involves taking cells from a patient’s immune system, altering them in the lab and injection them back in to a joint affected by rheumatoid arthritis. However, not only have there been no human trials yet, there have actually been no trials at all. The only work that’s been done so far is on the cells in the laboratory.
The announcement seems a little premature to me because they don’t even know yet whether the re-injection of the cells will cause the ‘fixed’ immune system cells to spread through the body or not.
The injection is likely to cost in the region of £25,000 according to press reports. The cynic in me wonders whether that’s why it’s being billed as a ‘one injection cure’. Because if all it did was halt the disease in one joint, and most RA patients have many joints affected, the cost would be totally prohibitive and perhaps the research would be stopped. According to the Daily Telegraph : ‘The team also hope to find out if the vaccine is effective only in the joints it is injected into, or whether the new cells spread throughout the body.’ So as yet they really have no idea whether it’s a cure or something to help one badly affected joint. And if it affects one joint for £25,000, the ‘National Institute for Clinical Excellence,’ in the UK, (who are the folks that decide whether medication is too expensive to give to patients, and who are often known as NASTY for obvious acronym reasons) certainly won’t be letting us UK folk have this on the NHS!
The BBC’s report quotes Professor Alan Silman, from the Arthritis Research Campaign, who are a charity I hold in great esteem and who are funding this research, as saying that the cells should be ‘reset’ to normal activity, rather than attacking the joints and that ‘The presumption is that they will stay this way, unless the same trigger which is thought to cause the problem in the first place is encountered again. Aye, there’s the rub!!
Not only is this currently nothing more than a presumption, but more importantly we don’t actually know what the trigger is – or I should probably say what the triggers are, as it’s thought that there are many different triggers. So let’s suppose, as has been suggested in the scientific literature, that one of the many triggers is consumption of decaffeinated coffee. If the cell ‘resetting’ is a success and NASTY decides the treatment will be made available an the NHS, then I toddle off for my injection, it works, I feel fantastic for a day or two (and that’s assuming, of course, that it doesn’t have some horrible side effects) and then I have a nice cup of decaffeinated coffee … if that’s my trigger, Wham – flare up – back to square one? I don’t know, but maybe. There isn’t even a comprehensive list of known triggers, so it’s not possible to even avoid them after the injection!
Then there’s the side effect thing – this is, like the current DMARDS and anti-TNFs, something that affects the immune system, stopping it from attacking the joints in error. Again according to the Telegraph article, and they may have got the wrong end of the stick slightly, or I may have, and I haven’t read any scientific paper on this, ‘Using chemicals, steroids and Vitamin D, the team has devised a way to manipulate a patient’s white blood cells so they suppress, rather than activate, the immune system.’ So …where does the immune system go? Is one cured of RA but suddenly unable to leave a big plastic bubble for fear of getting a common cold and dying from it due to lack of immune system? Probably not, because it’s probably very specific cells they’re targeting, but I’d like to understand this a bit better.
Don’t get me wrong, I’m delighted that RA, and cures for it, are being thoroughly researched, and even more glad that there might be a light at the end of the tunnel. As someone said on the NRAS forum yesterday, hope is a good medicine in itself. I’d just have appreciated some slightly more balanced and less gungho reporting.
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