Tags: anti-TNF, arthritis, autoimmune arthritis, biologic, biolsimilar, chest, clinician, cold, Conference, fatigue, Future of Health, hospital, NRAS, R.A., RA, Rheumatoid arthritis, sinuses
Well, I meant to write this post about biosimilars weeks ago, but alas, I came back from London and fairly quickly went down with a really bad cold, which I’m still getting over now! It was bad enough, combined with the methotrexate/immunosuppression, to require antibiotics for the secondary infection and it hit chest and sinusses at the same time, so I’ve been feeling pretty poorly!
Luckily Clare at NRAS had asked to write a brief report about the conference for them – on slightly more serious lines than my last post, and I did that pretty much straight away after coming back, before the cold hit, and that included something about the biosimilars, which I’m going to reproduce here. So here we go:
The next talk I attended was ‘Biosimilars: realising the opportunity for the NHS and patients’. Biologic patents are soon to run out. Biosimilars are biologics too, but they are designed to be as similar as possible to the molecules of already successful biologics, reducing the need for as much expensive primary research as went into the original biologics. As they are not identical, and as these molecules are extraordinarily complex, they will still need to go through, and some are already going through clinical trials, because, as Professor Peter Taylor said in his talk, ‘minor structural differences can have disproportionately large effects in patients’. However, there is a lack of education around biosimilars both among patients and clinicians, not to mention commissioners, so their introduction into the NHS could be a complex matter.
At the last minute there were no patients speaking in this talk due to some obscure ruling to do with the pharmaceutical company involved only speaking on panels with medically trained people.
First, Professor Peter Taylor, Norman Collison Chair of Musculoskeletal Science, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Sciences, University of Oxford, gave a very clear and concise outline of what a biosimilar was. Carol Roberts, PresQIPP Director on NHS involvement in biosimilars was keen to reassure that ‘value’ was based on outcome and not just on price, although biosimilars could be a huge saving to the NHS, £3.8 million. (Actually given NHS budgets that didn’t sound that huge to me, but every little helps!) People with RA on biologics now will probably be pleased to hear that the intention at the moment is to only put new patients onto biosimilars, not to take people off biologics that are working for them and move them onto the cheaper drugs. Janice Mooney, Senior Lecturer in Primary Care, University of East Anglia and senior Rheumatology Nurse Practitioner, pointed out that all clinicians need to be educated in biosimilars, not just patients and consultants. Given that patients may only see a consultant once a year (or less) this is obviously essential!
There was some concern among patients in the room about safety, although to me biosimilars do seem like the logical next step in medication of RA – another audience member pointed out that there was a massive trust issue between patients and the NHS with a feeling that the NHS always went for price above effectiveness, which led to a feeling that if something was cheaper it couldn’t be as good. One person even wondered if there could be a backlash against these similar to that of GM foods a few years ago, if the press wasn’t properly educated. Janice Mooney responded that this was a key area where education was required. David Taylor pointed out that clinical trials were not enough to guarantee safety, due to rare risks, because of the small number of people involved in trials, so that safe and responsible introduction of the new drugs was also essential.
From my own persona point of view, and of course this didn’t get added into my serious report for NRAS, I’d just like to say ra ra ra, go biosimilars … especially as i might be needing them in a few years’ time!
Tags: aches, arthritis, cold, diagnosis, doctor, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), shoulder, stiffness, tendonopathy
When I had that shoulder injection I was finding it very hard to pinpoint exactly where the pain was, but I know it was kind of ’round the back’. Well … the pain round the back has gone, the mobility is improved but not great, but now I can exactly pinpoint the pain that remains and it’s to the side/front! I still can’t lift the shoulder much above the horizontal.
I went to see my GP about it last week and she’s put me forward for a scan. I was rather hoping for another injection but she says it’s too soon as, since there has been some improvement from the one I had, it should still be working away and might start to improve the other bit too. I rather doubt that, but she’s the doc, so we shall see!
The other thing she said was that if they do the scan and can see the exact spot that is inflamed, they can do the injection there and then and be sure that it’s in just the right place. And being the NHS, by the time the scan comes through I will certainly have left enough time between injections!
So for the moment it’s a waiting game … again!
In the meantime I have my second cold of the winter, and it’s not even supposed to be winter yet. <sigh, achoooooooooooo=””> I’ve also had an unpleasant flare through most of September and the beginning of October, but that seems to be over now – phew. As usual, nothing whatsoever showed in the bloods. In fact, when I have my six-monthly rheumy appointment in December I’m expecting him to say ‘Oh, did you have a bit of a flare in July – your bloods are slightly up.’ I was 100% fine in July!
Tags: aches, arthritis, cold, flare, flare-up, joint pain, knee, knee cosy, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, stress, warm, weather
Oh crumbs – it’s snowing! You may remember that in my previous post I was winging about the cold the other day; well, it’s colder.
Yesterday the journey home was worse than I ever. I had a hectic day at work but I felt fine (if a little stressed) … and then I left the office to go home.
The moment my left knee found itself outside it started to complain, and the complaints got louder as I drove, to the point where I knew I wasn’t able to concentrate a hundred percent on my driving. Not good!
Although I get the ‘traditional’ sore and achy hands and feet of RA, the worst affected thing has always been my left knee, and if I have a flare that’s usually where it starts. This is the first year I’ve really noticed the cold affecting it though.
I’ve been trying to think of a way to keep that knee warm, specifically while driving. A lap blanket (Afghan in the US I believe) wouldn’t be safe, as it might slip into the foot-well and get tangled with my driving foot. (Fortunately, considering the sate of the left knee, I drive an automatic!)
I’ve decided the solution might be a ‘knee cosy’! I’m not quite sure yet how it would work. Perhaps a combination of a sports-style knee protector and a pouch that could incorporate one of those gel reusable hand-warmer type things?
I’m disappointed, but not surprised, to discover I’m not the first person (by a long, long way) to think up the neat ‘knee cosy’ moniker, but people are using it as a name for lap blankets, not for my cunning plan. I may have to make this my Christmas craft project!
Tags: cancer, cold, de-stress, flare, floret, holiday, hot flashes, hot flushes, RA, Rheumatoid arthritis, stress, thyroid, work
It’s been ages since I posted! First of all I was on holiday (fab) and then I was back (less fab) with intrays (both virtual and paper) bulging at the seems, even though ‘the boss’ was doing a sterling job of dealing with stuff while I was away. My stress levels weren’t helped by the tax office sending out wrong info about maternity pay just when I needed to look into it, as ‘the boss’ is nearly half way to having a baby! Their calculator told me I could claim back about 10% of what I paid out in statutory maternity pay – which worried me a bit, since I’d thought I could claim back 100%. Turns out I CAN claim back 100% – but I had a stressful week or two before I found that out. Then they decided to keep me on my toes by telling me I’d not paid April’s PAYE, so I had to waste time phoning them up, only to be told ‘Oh sorry – the computer is accidentally sending out non-payment notices every time someone sends in an end of year tax statement.’ Marvellous!! Work itself has been pretty stressful too – but at least busy, which as usual I have to keep reminding myself is GOOD THING!
On top of all this I’ve recently heard that a good, and local, friend of mine has just been diagnosed with breast cancer. She also has RA! As my friend Weeny would say, ‘You really must stop going for those buy one, get one free offers!’ Seriously though – you’d think RA would be enough to cope with!
As to the good ol’ RA, it’s MOSTLY been behaving itself. I thought I was in for a holiday flare as I watched my hands getting redder and redder and more and more swollen as hubby drove us down to Dorset, but a few hours after we had reached our friend’s house, where we were to stay the week, they’d settled right back down. Perhaps my body suddenly went ‘Hey, chill out penguin – you’re on holiday!’ Had a blipette (florette, flarette?) this week, probably due to finding out about my friend’s cancer, but again it hasn’t materialised into a flare, thank goodness.
I’ve also just had a thyroid test (again) because I’m feeling tired and FROZEN all the time. While this MIGHT have something to do with the fact it’s bloody cold and we’re getting early April weather in mid May, I’m frozen even when it’s quite warm, so I think there’s more to it than that. The only time I’m really warm, in fact, is when I’m having a hot flush. Imagine the fun of dressing for a day of being 90% frozen and 10% boiled – it’s kinda tricky!
I think there’s about six things that could be expanded on in separate posts here, not to mention an interesting bit of info about blood tests that Maggie sent me before I went away and that I’m still planning to blog on at some point. But meanwhile it’s nose back to the grindstone – a rather grim mixture of interviews on child abuse and prostitution, and a disciplinary hearing! Oh well – it can’t be chocolate every week – last week was mostly all about chocolate, so I suppose I shouldn’t complain!
Tags: cold, cough, exercise, flu
Them as know me might say it’s too late to start worrying about that now, but I’m getting even less exercise than usual at the moment because I feel OK until I start coughing, and I don’t tend to start coughing (much anyway) until I move. A few times lately I’ve been OK at work and then gone for a walk at lunchtime, coughed and spluttered my way around town (I could be blamed for being the disease vector for all the colds in this part of Norfolk at this rate), and felt absolutely lousy by the time I got back, all of ten minutes or so later. Exercise is supposed to make you feel GOOD! I’m getting really fed up with this!
It’s not helped by the fact that poor hubby has still got a cough too, much worse than mine, and we tend to set each other off – great fun in the middle of the night!
Tags: cold, doctor, fu, GP, methotrexate, MTX, R.A., RA, Rheumatoid arthritis, sore throat
1. Don’t become a GP if you have the personality of a lettuce.
2. Remember that it’s probably going to get pretty boring by Thursday afternoon – loads and loads of six-minute appointments seeing snotty little people who should have stayed at home – but it’s part of YOUR JOB NOT TO SHOW HOW BORED YOU ARE!
3. When examining a patient it might be helpful to say things like ‘I’m just going to feel your neck for glands’. Otherwise you may one day find yourself pinned to the wall at the back of the surgery by an angry young man who thought you were trying to strangle him.
Yes, you guessed it – I just saw a GP I didn’t really take to. And, as you might also have guessed, I’ve gone down with a stonking cold, probably courtesy of hubby, although mine is NOT flu. (No, I’m not suggesting he’s had ‘man flu’ – he had a temperature of 102 for two days; but I haven’t had a temperature at all.) It went with an equally stonking sore throat. When I looked in the mirror (as you do … don’t you? Well I do), I could see little red wheals right across my throat. When the GP looked he said he couldn’t see anything. Hmm, that’ll be because my tongue was in the way I expect. However, as he’d already decided to give me antibiotics given the fact I was on MTX for the R.A., and as we had had an instant personality clash and I wanted to get out of there a.s.a.p. I didn’t push the point.
So – all the usual drugs plus paracetamol, sudafed, antibiotics (third lot in a month I think). I’m heartily sick of all these drugs … but then again, the MTX is WORKING, so who am I to complain?
Tags: Brighton, cold, joints, R.A., Rheumatoid arthritis, sunshine, weather
What happened to those gorgeous sunny days we had last week – well, I’m glad I had the right week to go on holiday, anyway. I can hardly believe I was sitting on Brighton beach eating ice cream last week, whereas this morning I had to put the car’s heating on coming into work as my fingers nearly froze to the steering wheel.
Which reminds me – a friend mentioned this morning that she had a rather crunchy ice cream yesterday on Brancaster beach as the sand was blowing into it! That made me realise what a great advantage Brighton’s stony beach is. May not be quite as comfortable to sit on, but the wind REALLY has to blow before you get stones in your ice cream!
Anyway, back to frozen fingers … OK, I exaggerate – it wasn’t actually even frosty, but the cold really got into my joints and it felt like my fingers had locked into place. Oh joy – that’s what I’ve got to look forward to this winter. Looking on the bright side … hmm, now where did I put that bright side? It must be here somewhere … oh yes, I found one – I get a few days respite next week if the whole Barcelona thing comes off – they’re still getting 25 degrees and sunshine as far as I know!