Woohoo for Pilates… and other news!

April 22, 2017 at 5:39 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
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I have just realised I haven’t posted on this blog THIS YEAR! Shocking neglect! Part of the reason is that I haven’t been having much in the way of RA problems – things haven’t been perfect but I’ve felt generally much better since Christmas than I have for quite a while … until a couple of weeks ago, when I started to get morning stiffness (I’ve had NONE most of the year) and some pain.

Now various things could have been the (or part of the) root cause of this. We were on holiday three weeks ago (lovely time!) and that meant I had much more caffeine and much more gluten than I normally would – but I’ve been relatively good since I got back and it was only a week away. Then holiday also upset the routine and therefore the sleep, and sleeping badly always adds to the aches and pains.

However, one big thing is that I have been having weekly Pilates sessions since November (I think, maybe October, maybe early December!) and felt a lot better after the first few of those … and due to my holiday and then Easter I’ve had three weeks without a Pilates session. I suspect this has FAR more to do with the increase in pain than anything else, although of course I can’t prove it.

Anyway, I had my first session for three weeks yesterday and felt MUCH better after it … although I still had a lot of morning stiffness and pain today. Hopefully after another session or two I’ll be back on track.

In the meantime, a really excellent new NRAS magazine arrived last week – one of the many interesting articles hinted at a link between fibromyalgia and sleep (although that wasn’t what the article was actually about), and that is something I’ve been thinking for quite a while so it’s interesting to see the medics sniffing round the same idea.

Another interesting article discusses (briefly) a study carried out in San Francisco on why some people don’t respond well to anti-TNFs. Patients who have a higher proportion of an inflammatory protein called type 1 interferon beta, compared to type one interferon alpha, respond less well. Also monocytes (a type of white blood cell) behaved differently in different people. This could lead further down the interesting path of being able to personalise treatment more by understanding a patient’s personal biology, but also perhaps (my suggestion not the article’s) indicates another thing that’s been being suggested for a long time by a lot of people … that RA is not just one disease but many lumped together under the same label.

There are also various grim reminders that being overweight can cause further problems for people with RA so I need to get back on track with the diet, which has gone to pot a bit since the holiday! I did manage to mostly avoid chocolate at Easter … but then went and entered a raffle on Easter Monday with a table full of all sorts of prizes and got a call the other day to say I’d won … a chocolate bunny! Oops. Oh well, I thought, perhaps it’ll just be a little one. I picked it up today. It is labelled ‘Giant Chocolate Bunny’.  Perhaps I’ll do the sensible thing and give it away …  🙂

Cloudy with a Chance of Pain – again

September 10, 2016 at 2:15 pm | Posted in arthrits, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Preliminary data can be a dangerous thing, but the gloriously named ‘Cloudy with a Chance of Pain’ study, which I blogged about here when I first signed up for it, has produced some very interesting preliminary results. They have participants across the country and indeed internationally, but for the initial results they were focusing on two big cities (Leeds and London) and one rather smaller one, Norwich, quite close to me. They looked at chronic pain in general (not just arthritis) and found a link between wet weather and an increase in pain – something many of us have been muttering about for years (indeed people have been muttering about it for centuries), but which has never been seriously studied before so far as I know.

The Cloudy study works by getting patients to fill in an app each day which measures wellness, pain levels, stiffness levels, time spent outside, fatigue, tiredness on waking, air pressure (based on your phone letting them know where you are so they can find out the pressure from that) and possibly some other things I forget.

I’ve had some frustrations with the study, most notably that they lost five weeks of my data, which I’m still fuming about, although they did send a nice apology, which stopped me ranting at them any more. (Yes, I had the odd rant or two … sorry guys!) As time has gone on though, the app has improved a lot. It now allows you to graph any two measurements from the list above against each other to see if there are any obvious correlations. It’s then also possible to go onto the website and look at massed data for all participants, which you can then attempt to analyse and send in your own suggestions as to what the heck’s going on. I’ve not tried that – I’ve been too busy making a living – but it does sound like fun.

Interestingly, and if you’re in the UK and reading the blog I’d be mighty surprised if you haven’t heard about this already as it’s made a huge splash (pun intended) in the media, their preliminary data does suggest a link between chronic pain and wet weather. You can read more about it here on the Cloudy blog. Now it is preliminary, but it certainly does look promising. Another six months to go until the end of the study, and then we’ll see what they find out.

So do my graphs correlate – pressure and pain? Erm … nope, not really. Funny thing is they were correlating beautifully right up until the point they lost my data (thanks guys) but after the five-week hiatus pressure and pain haven’t correlated especially well. I wonder if that’s because I’ve generally not had much pain for the last couple (until yesterday, which is partly what reminded me to write something in my blog!) I think maybe if I’m already suffering, then things get worse when it’s wet. If I’m going through an ‘under control’ period, then it doesn’t matter how wet it is, I’m fine. That’s just speculation though – I’ve not tracked it properly. Maybe in another six months I’ll have a better idea.

So keep it up, Cloudy team – you’re doing a great job … even if you (or rather umotif, whose app it is) did lose my data. (Me, hold a grudge … never …)

The frustrations of not having a relationship with your doctor

June 29, 2016 at 4:32 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 7 Comments
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Thanks to the state of the NHS today (which, if you read this blog often you will know I harp on about endlessly) it is simply not possible to have a relationship with your GP these days (unless you’re incredibly lucky or live on some tiny island that actually has its own GP or something!) My GP practice has around 10 GPs plus locums. It’s pot luck who you get to speak to when you call and they phone you back, and then if they decide you should be seen you won’t see the person you spoke to that morning.

It also seems that they don’t have much of a relationship with the hospital and seem to have some sort of mythic belief in the power of the rheumatology helpline, as I’ve also mentioned before.

The myth

The patient calls the GP because they have an RA flare. This is a shocking waste of the GP’s time because these lucky, .lucky patients have an RA helpline that they can call and that will solve all their problems. They can speak to a lovely nurse* straight away and the nurse will wave her magic wand, waggle her magic pixie ears and solve the patient’s problem.

* Actually that’s the only true bit – the one we have at the moment IS a lovely nurse!

The facts

The lovely nurse, or even a secretary or receptionist, never EVER answers the helpline. It is an answerphone. That’s the way it’s set up. It’s not an answerphone on odd occasions when they’re exceptionally busy, it’s ALWAYS an answerphone. The message on the helpline says something like: ‘If you’re calling about a non-RA related problem, please call your GP. If you’re calling to change an appointment, please call reception. If you’re calling about an urgent need, please call your GP. If you’re calling to buy fish, please contact your fish monger. If you’re calling to moan about Brexit, please contact your MP. If you’re calling because you’re a moron, voted ‘Leave’ and can’t work out what a helpline is for, please call someone else and bother them. Now, if you really, really want to leave a message, we suppose you can. Give us your hospital number and name and telephone number and we’ll try to call you back in 24 hours – but no promises mind.’

I don’t know about you (actually I probably do, if you have RA) but I consider a flare pretty urgent.

While in an ideal world I would sit back on a couch, watch the telly and let my servants feed me grapes while I rested my knee and waited to see if it would clear up on its own, I do actually have a life (and no servants, and hubby is great but also has a life, and the cat just ain’t interested in helping), so I can’t just sit about and rest it. On that basis I can’t wait potentially 48 hours or more for the helpline to phone, and the nurse say, ‘Call your GP and get some prednisolone’ because then I can’t call the GP until Monday  as 48 hours is Friday morning and by the time I’ve heard back from the helpline the GP has run out of appointments. By that time I will have been flaring for over a week!

What Polly did Next

So … I went to the appointment grudgingly granted me by the grumpy GP. (Ooh, nice alteration that penguin!) Fortunately it’s with a much more pleasant locum GP than the one I spoke to on the phone. Unfortunately of course she doesn’t know me from Adam (or strictly speaking, as a doctor, she can probably spot I’m not Adam from the wobbly bits, so I should say she doesn’t know me from Eve). This means that she doesn’t know if I’m a moron or not, and therefore has to assume I am, as we always have to cater for the lowest common denominator.

‘How can I help you?’

‘I’m having an RA flare in my knees, as usually particularly in my left knee. It’s stiff, not very flexible and painful at times.’

‘Have you called the helpline, because really -‘

‘Yes.’

‘Oh, and what did they say?’

‘I said I’d called them, not that I’d spoken to them!’ I then explained, gently, ’cause she was a locum and therefore wouldn’t necessarily know any better, the realities of the helpline. (I didn’t mention Brexit or fish mongers.)

‘Hmm, you had a blood test only yesterday and your bloods were hardly elevated at all.’

‘They never are.’ The mere fact that my bloods are even a smidge elevated is a pretty strong indication of a flare with me. Sometimes I flare and there’es no indication whatsoever in the bloods. Now this is where a doctor relationship would come in handy. If she’d actually known me, known that I’ve had RA for nearly ten years, known that I’ve had umpteen flares in my left knee, known that blood tests are not a helpful indicator with me, known that I have a brain, we could have skipped the pointless bits, more of which are coming up.

‘Ah, well let’s have a look.’ Prod, poke.

‘Aaaaaaaaaaaaaaaaaaaaaaaaargh!’

‘Did that hurt when I pressed there?’

‘No, I just thought I’d make screamy gurgling noises for fun.’ (Nope, I didn’t really say that either, I just said yes.)

‘Can you bend it?’

‘This much.’ Demonstrated a very slight bend.

‘Ah. Have you tried pain killers… like paracetamol?’

I’m afraid I just looked at her and laughed, finally managing to choke out a ‘yes’, followed by ‘interspersed with ibuprofen.’ She looked amazed that I’d been able to think of painkillers all by myself.

‘Well I’ll prescribe a course of steroids. Now if they don’t work, we’ll have to consider other possibilities like osteoarthritis, as they should work for RA.’

‘Well, they’ve worked every other time I’ve had them, so touch wood that they will this time too.’

‘Oh … right.’ Look of mild astonishment, either that I’d had them before (it’s in the notes dear) or that I actually knew that I’d had them before, who knows.

So I thanked her very nicely, ’cause I’m a well brung-up penguin … and I might run into her again, and off I went to the chemist to get my steroids.

Again, after nearly ten years of RA, I think I recognise an RA flare when I see one … I really hope I’m not proved wrong and that the steroids do work again this time and it doesn’t turn out to be OA. That would be sooooo embarrassing after this post!

Cloudy with a Chance of Pain

May 2, 2016 at 1:55 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
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Isn’t that a fantastic title for a study of chronic pain to see if it is/might be related to the weather? Well, if you’re in the UK and have arthritis or chronic pain and  smart phone you can do more than just enjoy the great name – you can be part of the study!

All you have to do is agree to participate and download the Umotif app with the code word ‘cloudy’ – allow it to know your location and fill in the details (which really won’t take more than five minutes and probably less) each evening. I think you’re supposed to be able to set a reminder in the app, so that your phone will ping and remind you to complete the survey … as yet I haven’t worked out how tough!

To find out more about the project, funded by Arthritis Research UK, you can go to their website.

This sort of study needs lots and lots of people to really make it work, so if you’re eligible please do join in – it would be fascinating to see if any link to the weather is established. And as the article about this in Arthritis Care’s Inspire magazine points out, if nothing else the study might get a few headlines about arthritis, which ain’t that easy to do!

Even better, this really is ‘Citizen Science’ – anyone who wants to can explore the data, look for patterns and, if they find any, submit their ideas and hypotheses! Cool!

The Great Gluten Free Experiment

March 18, 2016 at 6:44 pm | Posted in joint pai, Me, rheumatoid arthritis (RA) | 16 Comments
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So, I’ve finally jumped on the band wagon and I’m trying out gluten free. At first I thought, ‘Oh, it’s another fad like the Atkins diet, it’ll soon fade away, just as that did’ – and yes, before I get all the cries of outrage in the comments, I know some people still use it and find it good; I also know much of the ‘science’ behind it was debunked and that, like all fads, there are some people who find it useful but a lot of people just wanted to try out the latest thing, found it didn’t work for them, and it’s quietly disappeared out of the press etc.

I thought the same would happen with gluten free, even though a lot of people whose opinions I respect were trying it out and finding it useful. The tipping point was a couple of extra people I respect really swearing by it and a partial reading of Gut by Giulia Enders, a highly entertaining read (although only in small doses, which is why I’ve not finished it yet) about ‘the body’s most underrated organ’ – yes, it’s more than one organ but we’ll forgive her that as a translation error; the original is in German. She’s a ‘real scientist’ and points out the vital difference between gluten allergy and celiac disease (which are not the same thing, thanks Kate for pointing that out!), which I know I haven’t got, and gluten intolerance, which perhaps I have. She lists the possible symptoms for gluten intolerance: ‘digestive problems’, flatulence, headaches and painful joints. Without going into unnecessary detail, let’s just say I read that and thought ‘box ticked’ about everything there! So I ummed and urred about whether to give it a try and then put lots of unnecessary obstacles in my own way, because I didn’t really want to, and I especially didn’t want to find I actually had gluten intolerance. What?! No more cakes (except brownies of courses – everywhere loves to proudly advertise their gluten free brownies – not  a special effort; the basic brownie recipe has no flour in it!) Also no more bread, crackers, matzo? YIKES!

Then I read what Saint Giulia had to say a bit more carefully. ‘Gluten sensitivity […] is not a sentence to a life of gluten avoidance.’ HURRAH! So I got some excellent advice on what was available from my gluten-free aunt, and gave it a trial run last week. The trial run involved cutting out my beloved daily breakfast bran flakes (yes, I know I’m odd but I actually LOVE bran flakes) and eating as normal apart from that, but noting what foods I normally eat did have gluten in so I could find alternatives and cut them out. (While my aunt’s gluten free breakfast sounded amazing, you’d have to be retired to have time to prepare it!) So breakfast is now simply a gluten-free cereal, nowhere near as tasty as bran flakes IMO but not bad. I hardly ever eat bread anyway although I do enjoy it, so for the gluten free experiment I’m just not eating bread – easy. Same applies to matzo although I normally eat them a tad more often than bread. I’ve replaced noodles with rice noodles (which will take a bit of getting used to on the cooking front – a big, wobbly gelatinous mass for dinner last night. (‘And that was just hubby,’ says hubby!) I’ve replaced our standard (oh God, we’ve gone middle aged and have a standard dinner every week) southern fried chicken, with a non-bread-crumb coated, but just as easy to sling in the oven, chicken thing. Where we used to sometimes have jacket potato with fish cake, which I always thought was a bit of a potato overdose anyway, I will now have jacket potato with tuna; hubby can still have his potato overdose. And finally, pasta bake – happily there is a gluten free pasta made with rice flour – it’s a bit odd but once you throw all the other pasta bake ingredients at it, it’s fine.

So now I’ve been gluten fully gluten free for all of four days – obviously no startling effects yet but I have seen some effects which may or may not be related.

So far no big difference as far as the joint pain goes, and I had a migraine last night so I’m thinking the headaches haven’t dramatically improved yet either (although maybe migraines don’t count as they’re not ordinary headaches), but the stomach-related stuff, again without going into unpleasant detail, is definitely improved. It’s not perfect but there’s a clear improvement. Whether it’s related or not I wouldn’t like to say just yet, but it’s improved.

And another thing that’s improved is not mentioned as a possible symptom of gluten intolerance, although it is listed as a possible intolerance symptom for other things. I’ve suffered from really awful catarrh (post nasal drip) for years and years, and that has dramatically improved too. Coincidence? Perhaps. We’ll have to wait and see.

And the great thing is that if it does make a difference, I don’t have to avoid all those nice gluteny things for ever; I just have to be careful and sparing … and probably stay off those bran flakes!

I’ll keep you posted on how it goes.

 

To flare or not to flare – that is the question

March 17, 2015 at 3:01 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 9 Comments
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I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!

Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …

That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!

Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!

Exercise oops!

February 12, 2015 at 10:20 pm | Posted in arthrits, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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Well, after a food-laden Christmas and New Year, I finally got round to some serious dieting and an exercise plan about three weeks before my (inevitably food-laden) birthday!  Having had a fabulous weekend away in Ely and Cambridge, staying in the delightful  Poet’s House Hotel and eating their delicious dinner and delicious breakfast (scrambled eggs and smoked salmon on brioche, plus fruit juice, coffee, cereal, bits and bobs … no need for lunch then!), I thought I’d have just a nibble at lunch time. We popped into a coffee shop in Cambridge and I chose what I honestly thought was a small, and fruity, cake type thing so I could say ‘well at least it was fruit’ – only it turned out to be cherry crumble and came with ice cream. Oops.

So anyway, the point is that I decided I’d better get straight back on the wagon. No problem with the diet – right back into the healthy food as soon as I got home, helped by my birthday present from my friend Debbie – a healthy food hamper! The exercise was a bit more of a challenge though. I try to get a walk every lunch time but this week I’ve managed it precisely once. OH DEAR! Today my excuse for not going, apart from being incredibly busy at work and it being grey and gloomy and COLD outside, was that I was going to do my 20 minute embarrassing exercise video thing this evening.

Well of course I got home and didn’t want to do the exercises – so I thought ‘JUST GET ON WITH IT! If you stop, you’re done for!’ So I just got on with it. (Bet you weren’t expecting that, were you?!) I actually got through my 20 minutes (20 minutes and 40 seconds if you’re counting… I was) and was very pleased with myself that I’d done it, although not at a good, high energy level, BUT … my feet felt like lumps of lead (semi-molten) and my knees felt like lumps of wood and the rest of me felt … well, I’ve felt better. Rather disappointing since the last exercise I did, on Saturday morning, went absolutely fantastically and I felt great afterwards – if a little sweaty!

Now, four hours later, my feet still feel like semi-molten lead and my knees feel like … well, maybe balsa rather than mahogany but still not knees … and I’m thinking ‘OOPS – I think I might be going into a flare’ … in which case forcing myself to exercise probably wasn’t the cleverest thing to do after all … but hey, who knew?! I was fine early today – it’s just sprung itself on me.

Hopefully it’ll be one of my famous ‘flarette’s’ and I’ll be all right after a good night’s sleep. Anyway, having just re-read my last blog, I feel a whole lot better already. Today certainly isn’t as bad as that day was!

As things have been so good over the last few months I’m not taking any anti-inflammatories at the moment (with the blessings of my consultant), but I can always take some if need be (also with blessings of consultant), so that should sort me out if it doesn’t sort out naturally.

Biosimilars

December 12, 2014 at 12:03 pm | Posted in arthrits, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis (RA) | 2 Comments
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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!

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