Tags: methotrexate, RA, Rheumatoid arthritis, arthritis, injection, rheumatoid arthritis (RA), hospital, MTX, presription
I got an invoice in the post yesterday from the hospital, ‘Charge for prescription fee’. I haven’t had a prescription fro the hospital – what the heck are they on about? Then I thought, ‘Aha – it’s probably for my appointment on 8th Feb – the injection’ so I phoned finance and pointed out that I had a pre-payment certificate, expecting a whole load of argument about, ‘Oh, we don’t deal with those’, but no – it went very smoothly and she processed it through with the pre-payment certificate- all fine.
Then I took another look at the invoice for some reason – not sure why – and read it properly. ‘Charge for prescription fee 17.01.16 – as no credit terms are offered, please remit by return. If no payment is received within 30 days the invoice will be passed to our debt collection agency.’
Now I was pretty riled and slightly confused – but imagine how some poor little old lady would feel receiving that – OK, it’s not a large amount of money but the aggressive tone is enough to give you palpitations if you’re that way inclined. (I’m not, luckily – it just made me cross!) So I phoned the finance department back and said, ‘Oy, what’s this about 19th of January. I wasn’t there on the 19th of January.’ only (slightly) more politely. ‘Just a moment, I’ll check …’ <Hold music> ‘Yes, that’s right, it was processed on the 19th of January.’ Deep breath … ‘Yes, I know that … but I wasn’t there on the 19th of January so what is this for?’ ‘Oh … er…. we’ve only got the same info that you have – we’re just asked to process the invoice. So you didn’t have an outpatient visit?’ ‘No.’ ‘And you didn’t visit A&E?’ ‘No …’ Did I not just say I wasn’t there? Was that not clear enough? Obviously not. ‘Oh … well, would you like to check with pharmacy?’ So she gave me the pharmacy number and said, ‘But don’t worry, it’s processed on your per-payment certificate anyway.’ And I’m afraid that riled me even more – typical number-cruncher attitude – it doesn’t really matter what it’s for as long as the numbers balance. But I didn’t say anything except a polite thank you for the pharmacy number.
So I phoned the pharmacy – ‘Oh yes, it’s for an injection – it was sent to your GP on the 19th of January.’ ‘
‘It better not have been – because they can supply their own quite handily I believe – they don’t need them sent from the hospital. Are you telling me I’m being charged for something I’m not going to get because my next appointment is with the hospital, not the GP? Or is it perhaps a dose that’s been sent to the hospital rheumatology department, because I do have an appointment with them on 8th February.’ And of course that’s what it was. Hurrah.
Is it really that hard to put on the invoice ‘For hospital methotrexate injection on 8th February’ and take out the whole ‘You are an evil person who hasn’t paid instantly for something you didn’t even know about’ bit? Apparently so. Grrr …
And that only took 20 minutes to sort out and was a one-off. A very intersting post from Carla over at Carla’s Corner, on the time needed to cope with a chronic illness. I have a tiny weeny fraction of what she has to cope with and it still gets me grumpy and slightly stressed.
Tags: aches, arthritis, doctor, flu, GP, immunosuppressed, injection, jab, joint pain, medicine, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I’ve been noticing a few improvements around the whole flu jab situation this year. In the previous few years I have a) struggled to book in for one because the surgery receptionists didn’t know about immunosuppression b) been disgusted at the ‘cattle market’ approach to the flu clinic, which I thought was restricted to our rural Norfolk surgery, but then found, via Helen at Pens and Needles extended to Canada too!
Here’s the way it used to work: You fight to get into the clinic in the first place, get your slot (which if I remember rightly was ‘morning’ or ‘afternoon’) and then turn up to join the queue extending all around the waiting room and out the door. You are told to be ready and waiting with your arm exposed ready for jabbing, even though the surgery is freezing because the door is permanently open due to people standing in the entry waiting for flu jabs. The receptionists ask why you were there if you looked under 70, and are puzzled when you tell them … but let you through anyway. You have now been singled out in front of hundreds of somewhat elderly people who are now all staring at you and wondering if you’re trying to con the system, so you feel great! You get to the far side of the waiting room eventually and are asked to ‘fill in this form’. The form has nothing to do with the flu jab but asks if you smoke and would like anti-smoking advice. (Apparently doing this meant they could tick a box somewhere and claim extra funding for ‘offering anti-smoking advice!) You get through to a corridor where all the doors of the rooms are open and wander about until someone says ‘in here’. You go in, and with the door still open and other bewildered patients pottering about in the corridor behind you, you’re asked, ‘Why are you having the flu jab?’ You tell them … again. They say, ‘OK’ and jab you, and then follow that up with something like, ‘Oh – hope you aren’t allergic to egg or pregnant – should have asked you first.’ Fortunately I was neither!
Here’s how it is now: You phone up and say you need a flu injection. The receptionist says fine, she’ll book you in. She goes to your record, sees you’re not elderly and says, ‘Why?’ You say, ‘Immunosuppressed.’ She says, ‘That’s fine,’ and books you in. To your astonishment you’re given an actual time, 3:10, not ‘afternoon’. Then later on in the week you find out that some of your friends have already had their jabs at the surgery and they’re doing it like a proper clinic – called up individually, closed doors, proper checking that it’s OK to give you one etc. Wow – you’re impressed!
You go for your regular methotrexate blood test and notice a big poster in the surgery window about, of all things, getting the flu jab if you are immunosuppressed! After a general rheumatology chat, taking bloods and general chitchat the nurse says, ‘Have you had your flu jab yet?’ ‘No,’ you say, ‘ but it’s booked in for next week.’ ‘Would you like it today?’ she says. After picking yourself up off the floor, rubbing your ears and asking her if she could please repeat herself because you thought she’d just offered you the flu jab today, and finding that in fact that is what she said, you say, ‘Yes please.’ After she’s sucked the appropriate amount of blood she goes and gets the flu injection. ‘I don’t know if I can roll this shirt up far enough’ you say. ‘ I wasn’t prepared for this.’ ‘That’s OK,’ says the nurse with a grin, ‘We can do it through the shirt. On second thoughts better not, the needles are so flimsy we’re having trouble just getting them through the skin!’
Aha – you think – I’m back in the land of normality now! Damn, I was enjoying this strange fantasy world where the surgery actually seems to be doing flu jabs in a sensible and logical manner.
But then you find you can roll up your shirt and in fact the needle goes in fine, if somewhat painfully!
‘Right,’ you say, ‘I suppose I’d better go and cancel my appointment for next week at the front desk.’ The nurse smiles and says breezily, ‘Oh no need – with this new database system we’ve got I can do it really easily from here,’ and she does!
Now you might think surely that wasn’t actually that much to ask – you might say, as ‘brother Penguin’ did some time ago, that your surgery has been doing this for years, but when you’ve become conditioned to being in the cattle market scenario for so many years, this just seems incredible, fantastic, too good to be true …but it’s not. It really happened.
Incredibly the nurse told me that some patients had actually complained ‘We wanted to come to the big flu clinic like last year!’ There’s no pleasing some people!
Tags: arthritis, cure, injection, medical journalism, medicine, R.A., RA, remission, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
OK, so I really depressed myself with my last post – what a dumb, trivial thing to get depressed about in the scheme of things,* but that’s the way it is sometimes when you’re an overweight dumpy-frump with curled-up feet and possibly PMT!! So anyway, here’s something potentially more cheerful!
According to The Daily Telegraph this morning, there’s another ‘one-treatment cure for RA’ in the pipeline, and unlike the last one, that needed to be injected into every joint, this really is a one-off treatment that could put patients into remission for years or even a lifetime.
To say it’s early days would be a bit of an understatement, but the good news is that, like most RA drugs, it’s a drug, otelixizumab, that’s already been shown to safe in humans because has already been used ” in much stronger doses to prevent transplant patients rejecting donor organs”. If it works, we’re looking ten years down the line – they’re just about to start the first clinical trial in humans. And if it works the researchers have already said that it might potentially only help people in the early stages; “”However, the chance of this happening in patients who have had the disease for a while is not altogether absent,” says Prof John Isaacs of Newcastle Uni. Oh yes, and at the moment ‘one-off’ is not quite as it sounds – you’re looking at between two and five hours A DAY for FIVE DAYS of intravenous injection. Worse than dialysis. But the point is that unlike dialysis that’s it – you’re cooked. Off you go and hopefully no more RA damage. And also they’re hoping that if they can prove it works, they will be able to produce a different form of the drug that patients can administer themselves (and that presumably will not take ten hours minimum).
This is a nicely balanced article in my opinion – and I rarely say that about medical journalism – it’s not full of the hyperbole that the last one injection cure seemed to bring out and it doesn’t say ‘lots of old people will benefit’ as did the last arthritis article I commented on, although Kate Devlin hasn’t been brave enough to try and say what RA is (probably having seen so many medical journalists shot down when they do that!) The closest she gets is “The condition is different from osteoarthritis, the ‘wear and tear’ form of the disease that typically effects older patients.” Well it doesn’t say much, but you can’t argue with it, really. ;o)
This may not be something that will ever help me (because ten years from now I guess I won’t be considered to be in the early stages of the disease, even if it stays mild), and it probably won’t help you if your’re reading this blog, but anything that really has the potential to ‘cure’ RA (and obviously it won’t undo any joint damage that’s already taken place, but if it stops further damage – great), has got to be good news – and especially good news if you have RA and also have children!
* Not that I’m suggesting your wedding is trivial, Mrs Mooseface!
Tags: arthritis, certolizumab pegol, Cimzia, disease progression, DMARDs, European Commission, FDA, injection, joint damage, methotrexate, MTX, NHS, NICE, RA, Rheumatoid arthritis
Cimzia (certolizumab pegol), a biologic produced by UCB and administered by injection under the skin, has got the OK from the European Commission for use in rheumatoid arthritis. (It was approved by the FDA in the US in May.) It has been approved both as a combination therapy with MTX for those with moderate to severe active RA who haven’t responded to treatment with DMARDs, AND as a treatment on its own where a patient can’t use methotrexate.
Trials showed that Cimzia brought significant benefits to patients that lasted for more than two years. Clinical data also indicates that Cimzia stops disease progression – or did for the length of the trial, which was around two years.
Of course the big question for the UK (and it’s a big question for UCB as well since the UK market is quite a significant one) is will ‘NICE’ approve it for use on the NHS? I wouldn’t like to try and guess but it’ll be an interesting story to follow.
Tags: anti-TNFs, ARC, Arthritis Research Campaign, BBC, cells, coffee, cure, cure for RA, Daily Telegraph, DMARD, DMARDs, drug, five years, immune system, injection, RA, research, Rheumatoid arthritis, rheumatology, scientific paper, side effects, trigger, vaccine
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.