Do as I say, not as I do!

February 12, 2018 at 4:29 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 6 Comments
Tags: , , , , , , , , , , , , ,

I’m sure I’ve banged on at least once or twice on this blog about how important it is for the patient to manage their own illness as much as possible, and how important it is to keep a track yourself of your blood test results etc.

Weeeeeell, I’ve had this dratted disease for over ten years now and for quite a lot of those years I assiduously kept track of my blood test results, which never showed anything in all that time. And eventually, what with a change in the system that meant we only see the Rheumy nurse once ever three months, and they stopped issuing booklets with the results in, and given that the results never showed anything, I stopped looking. They’re available to me on line but I just didn’t bother.

So, fast forward to my last flare, not that long ago, a couple of weeks ago in fact, when the doc told me my bloods were up and I said ‘But that never happens’, turns out it happens more often than i thought.

I mentioned in that last post that my hospital appointment had been cancelled, and they originally said the next date was July (!) but then I got a call to say they were putting in a clinic to make up for the cancelled one, and that was last week … so off I toddled dutifully to the hospital. As could be virtually guaranteed, although my knee played up slightly the day before the appointment, it was fine on the day –  thankfully the steroids had done their job!

So I went in and found the previous registrar has now moved on to bigger and better things and a charming young lady doctor was there instead. I told Dr Delightful that I’d had a flare the previous week but now things were much better, and that surprisingly my bloods had actually been slightly up, which never happened!

‘Oh no,’ said Dr. D, ‘that’s not right.’

‘Huh,’ i said intelligently, ‘well that’s what the GP told me.’

‘Oh no,’ she said, ‘they have been up since last May.’

‘WHAAAAAAAAAAAAAAT?!’

‘Yes indeed, in fact in August the ESR (normal range up to 12) hit 35, which is pretty high.’

Oh look, August, what a coincidence – July was the previous time I had a flare and the GP decided in his infinite wisdom not to issue steroids, but just to give me opioid  painkillers (which were useless.) So then the bloods are way up in August and what does the GP do about it? Makes a note on my records that says ‘abnormal but expected’ and leaves it.

(I didn’t find that out until today when I went online to check up n my notes and see what all these results had been.)

I think what happens is that the GP sees the other tests are normal and goes, ‘Oh, it’s only ESR …’ <Sigh>

Anyway, Dr Delightful decided this really wasn’t on and ‘under control’ does not mean having two significant flares per year, so she has increased the dose of methotrexate to 20 mg instead of the previous 17.5 mg.

Here’s the thing though – I’ve had two flares a year for ever – including the last two or three years when I’ve been at 17.5 mg methotrexate but the bloods were OK . The previous registrar was never interested in putting up the MTX … was it because the bloods were OK and I wasn’t flaring when I went to the hospital, or is it just a difference in attitude between the two doctors? I guess the only way to find out is to wait and see … IF I start taking the increased MTX and my blood results go back to normal but I’m still having significant flares, will Dr Delightful say, ‘Oh, no, you’re fine, stick at this dose’ or will she say, ‘Well if you’re still flaring, we’d better put it up or try something else?’ I’d like to think the latter but I have my doubts.

It seems to me there is far too much reliance on blood results and not enough on patient experience, but what can you do?

Advertisements

Good news and bad news … and good news …

January 29, 2018 at 10:38 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, crafting, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , , , , , , , , , , , ,

Well the good news is that my poor, neglected blog has been poor and neglected since RA Blog Week in September of last year because I have been really well! I’ve had the odd hip pain but only when in bed, which means I never remember to ask the doc about it because when I’m awake, I’m fine! Other than that I’ve been OK. In fact at the beginning of the month my regular 6-monthly hospital appointment was cancelled at the last minute because the doc was sick. The beleaguered receptionist rang to let me know and to apologise and was very pleasantly surprised when I said, ‘That’s fine – saves me coming in on a horrible, foggy morning and waiting around!’ ‘Oh,’ she said, ‘that’s not the reaction I’ve had so far!’ I pointed out that I felt fine and was busy at work and delighted not to have to waste all our time and she said, ‘You’re the sort of person I LIKE to ring!’ I wished her luck with the rest of the calls and that was that.

The following week I had a day off to do a textile workshop, which was great fun. (I was learning, not teaching. My last attempt at teaching was risible and should be enough to put me off teaching a workshop for probably another 10 years or so!) At the end of the day though I had TERRIBLE lower back pain – one of the worst pains I’ve ever had. I just didn’t know what to do with myself. Luckily after an early night it settled in to unpleasant but not terrible lower back pain for the next week or so. The very day after that back pain started I had my regular monthly blood test, which I thought no more about.

That week I had an email from my friend Carla emailed me to point out that my blog was woefully out of date (and other stuff, but that was definitely a significant part of the email!) Stupidly I said, ‘Oh, that’s ’cause I’m fine! Nothing to blog about!’ I should probably have touched wood, crossed flippers and said kein aiyn hara (and anything else superstitious you can think of) but I didn’t!

Now, here’s the interesting thing. (‘Yay, finally, something interesting,’ I hear you cry.) My bloods, which are never, never, NEVER up, even when I’m having a serious flare, were somewhat up the day after the back problem started. I didn’t know this until a knee flare started the following week and I limped into the doc with my stick.

‘How are you today?’ the very pleasant, if slightly odd-looking, locum doc I’d never seen before asked cheerfully!

‘Oh, fine, on the whole,’ I replied, equally cheerfully, ‘except see the stick? Well I have rheumatoid arthritis’ (knowing the chance of his having read any notes was minimal!) ‘but I normally walk find and don’t need a stick. I’m having a bad flare in my left knee …and the right one’s not perfect either.’

‘Hmmm, let’s have a look. Ah, did you know your bloods were up this month?’

‘No! That’s intriguing, they’re never up!’ And I explained that even when I flare horribly there’s normally nothing to show in the bloods, so even a slight raise, as this was, was interesting. But I didn’t connect it with the back problem, or the fact that they were up a week before the knee flare … brain not fully functioning due to a couple of poor nights’ sleep thanks to knee pain!

‘Hmm, what do you usually do when this happens?’

‘Steroids – prednisilone’.

‘Hmm,’ (his favourite word I think), ‘Well that’s not ideal!’

So I looked him straight in the eye, which was kinda hard ’cause he was an odd-looking chap, but that’s neither here nor there, and said, ‘Oh … so what is ideal then?’

Didn’t even get a hmm that time, more of an ‘Uh … uh … uh … erm…’ followed by, ‘are you on any regular medication for it?’ See, told you he wouldn’t have looked at the notes! So I explained about methotrexate and hydroxychlorquine and he said, ‘Has anyone talked to you about tweaking your methotrexate dose?’

‘Yes of course, in the 11 years I’ve had this it’s been altered many times but that doesn’t really help with a short-term flare that needs to be cleared up so that I can carry on living/working,’ or words to that effect.

‘Hmmmmm … let’s see … when did you last have steroids?’

‘Ages ago?’

‘Oh heavens yes, two-and-a-half years ago!’

‘Really, surely not that long!’

‘Hmmm… oh my mistake, one-and-a-half years ago. Oh well, in that case we can hardly say you’re overusing them. Shall we go for it then?’

‘I think we should!’ Metaphorically wiping my forehead in relief to have come to sensible conclusion.

So we went for it. But of course in my anxiety to get something proper sorted out for the knee I completely forgot about the back (or hips for that matter) again.

Six-and-a-half HOURS later I was able to pick up the steroids from the chemist and finally get some proper treatment for the knee. (Once upon a time your doc would print out the scrip, sign it and give it to you. This must have added all of 30 seconds to the consultation time. Now, presumably to ‘save time’ the prescriptions have to go to a central place, get printed, are signed by some other doc when he has the time, and then go over to the chemist. The other doctor doesn’t have time until the end of the day so you wait all day for something that needs treatment as early as possible. MADNESS!)

Anyhooo … I’m now left with a lot of questions and no one to answer them. I really, really hope I will never have back pain like that again and I just pulled a muscle and perhaps that caused an inflammatory response that got into the bloods and raised my ESR.  OR perhaps the back pain was actually referred knee pain, which can happen in that part of the back apparently. Or, perhaps, worst case, that was arthritis in the back and I’ll have another bout some time. Flippers crossed, toca medera (my Spanish teacher’s favourite phrase after madre mia!), kein aiyn hara that that won’t be the case!

And the final bit of good news? Well, the knee is responding extremely well to the steroids! So are the hips, which is a bit concerning … if they get back again I probably need to drag myself down to the doc again, but I think you can see from this post why i try not to do that too often!

RA Blog Week Day 3: Advice

September 28, 2016 at 2:25 pm | Posted in rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 8 Comments
Tags: , , , , , , , , , , , ,

I’m taking a ‘wildcard’ option today. The topic is ‘Biologics’ but I’m still on good old methotrexate and likely to remain so unless things get much, much worse, because biologics aren’t an option for mild RA in the UK. So there are two wildcard options – depression and advice. I don’t suffer from depression although a flare certainly makes me low and grumpy, so I’m going for advice.

What advice can I offer people who’ve just been diagnosed?  Well, off the top of my head, here goes. I’m sure there are many more sensible things I could have said if I’d been more organised about RA blog week – but this is me!

  1. DON’T PANIC!Perhaps I should display this in ‘large, friendly letters’ across my blog, a la Hitchhikers’ Guide. 
  2. Listen to your doctors and nurses, but don’t assume they know it all. (That’s for them to do and they usually do, but it’s not the case
  3. DON’T PANIC specifically about the side effects in medications. Most people don’t have any side effects. You might be lucky, you might not – but if you don’t try, you’ll never know. I’ve been lucky and had only the most minor of side effects, or none at all.
  4. Get advice from the RA community – local support groups, online support groups (such as Health Unlocked in the UK) and local or national charities e.g. NRAS in the UK, who I have found extremely helpful.
  5. Use what aids you need – and find out what aids are out there that can help you.
  6. Don’t be embarrassed to tell people about your RA and to use aids. Amanda John has written some terrific stuff over the years about dealing with embarrassment – or sometimes failing to do so.
  7. Find ways to deal with people – This can be HARD! Most people will be curious, many will ask stupid questions and even more will offer completely useless advice about their aunt’s cousin’s daughter’s dog who had RA, ate some honey and got better. It won’t help you to give a snappy answer, although it might feel good at the time. (I learnt this the hard way.) At the same time, try to find a quick way of explaining RA – true friends will listen to you harp on about for hours; the more acquaintance-level ones are understandably easily bored!
  8. Read blogs about RA – but remember everyone’s experience is different. Just because Carla, author of the terrific Carla’s Corner, has had to have multiple ops, doesn’t mean you will. Just because Wren has days when she can’t turn a page without pain doesn’t mean you will. But when you want support and advice the RA blogging community is a great place to be!
  9. Pace yourself! This is so hard! Fatigue is a big part of RA for a lot of people. ‘Pushing through it’ and ‘carrying on regardless’ DOES NOT WORK! You need to pace yourself. I frequently refuse to arrange to do something Sunday if I’m already busy Saturday – or vice versa, and I am pretty strict about keeping my work hours to a standard working week.
  10. Consider writing a blog. As you can tell from some of my more moaning efforts, it’s cathartic! It also puts you at the heart of the great RA blogging community, allows you to find new friends who really understand and empathise with what you’re going through, and allows you to moan at the blog sometimes if you feel you’re overdoing complaining to your loved ones!

RA Blog Week Day 2: Active or Reactive Patient?

September 27, 2016 at 10:20 am | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , , , , , , , , , ,

Well, what a dismal excuse for a blogging penguin I am! I completely forget that yesterday was day one of RA blog week. I guess this makes me a reactive blogger, or at least definitely not an active one, but now it’s day 2 and we’re discussing active versus reactive patients. Well, I’d like to think I’ve been an active patient from day 1 … that’s what I’d LIKE to think … and indeed I was already looking into RA and researching it before I was diagnosed, because the GP had suggested it as a possibility and I wanted to find out more. Pretty active, eh? Maybe too active? Maybe I was filling my head with RA concerns and worries, and RA symptoms that I might then convince myself I had?

I don’t think that was the case though – I think it’s important to know as much about the disease as possible, as soon as possible – although having said that, there’s so much info out there of, shall we say a less positive nature, that it can be pretty scary! It’s important to remember that most people with only mild RA, such as myself, have other things to do than write about the fact that they’re actually pretty OK most of the time and have nothing much to say! Consequently the really useful and important blogs out there, and other patient inputs, such as the Health Unlocked network, are written by patients with serious problems and severe RA.

Nevertheless, I was active from the start, partly because it was such a relief to have even a possible diagnosis, after years of odd symptoms that had doctors scratching their heads and trying to tell me I was depressed. (I know depression, I’ve lived with people with depression, I have friends with severe depression … I can recognise it, and I’ve never been depressed in my life.)

Having said all that, it’s hard to remain an active patient, I find, once you’re a number in the NHS health system. It’s hard to keep going and pushing and demanding what you’ve already been promised but aren’t getting, when you’re already feeling at a bit of a low ebb on the health front. It’s hard to put up with appointments not when you need them but when the hospital feel like fitting you in, and with nurses who clearly don’t care. Even harder when you read about the system being hailed as a paragon of virtue in the US. The IDEA of the NHS is fabulous – the ideal is spot on – the actual working is a bit of a disaster, sad to say. There are times when I go along to an appointment with no more active thought in my mind than, ‘Let’s get this over with for another six months to a year.’

Having said that, I think I’m still pretty active. I’m still prepared to fight with the GP for a steroid shot when I’m darned sure that’s what I need … and I’ve been proved right so far. And I’m still interested in the disease from a standing back and looking at the biology, being fascinated with the latest research and possible cures on the horizon point of view.

I think this is a rather different picture of the ‘active patient’ than the one painted by many of my US blogging friends. The US health system is as badly flawed as our I think, but in very different ways. IF you have got health cover and can maintain it, you’ve probably got a relationship with your rhemmy doctor and can see them when you need it (or within a few days not a few months). If you go in with a list the doc is impressed whereas here they just roll their eyes and groan. But fundamentally to my mind an active patient is one who takes control of their RA as much as possible, and not just on the purely medical, drug-related, front, but also doing what we can to control it and minimise impact – such as exercising whenever possible, eating sensibly etc.

Why haven’t I talked more about that? Because I’m a bit rubbish at it! I have been trying to get a 1.5 mile walk in at lunchtime though – sometimes it’s only 1 mile, sometimes it’s half a mile, but at least I’m trying! As to eating … let’s not go there in this post. It’s something I do rather too well!

 

The 2nd Annual RA Blog Week is on its way

September 16, 2016 at 2:17 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | Leave a comment
Tags: , , , , , , ,

Those of you who know me, either in person or through the blog (or in Carla’s case both), will know that the chance of me blogging once a day for a whole week is … erm, let’s be honest … pretty much nil, and I’m in total awe of those of you who manage to do it for a month, which I seem to remember included Wren and possibly Catepoo at some point also. However, the Second Annual RA Blog Week is coming up – 26th September to 2nd October, and I’m gonna try … I really am. It’s organised by Rick Phillips wtih input from Wren (who seems to be all over the RA blog sphere at the moment – go girl) and a bunch of others.

It has this handsome badge, which I will try to remember to put in my widgets on the blog when it’s blog week time (if I can remember how) …

oh dear, that’s two things to remember.

Fortunately if you sign up for RA Blog Week here then Rick will send you reminders – or at least I think so. Maybe you have to sign up somewhere else for reminders.

I’m allowed to be brainless at the moment if you don’t mind! I’ve had a heck of a couple of months at work and I’ve just ‘broken up’ for the holidays – at least a week’s holiday, which by the time this is published I will be on …or back from, depending on when I publish this. Consequently the brain is in free-fall at the moment.

There’s been a vote on what to blog on for each day, with a couple of wildcard topics thrown in if one really doesn’t suit you, and you can find out what each day’s blog will be about here. I love stuff like this because one of two things happens: 1) We all take the same topic and come up with completely different takes on it, and then say , ‘Wow, whoda thought it – so many ways to look at the same topic!’ or 2) We all say pretty much the same thing and then go, ‘Wow, whoda thought it? Everyone’s feeling the same as me, and I thought it was just me. I don’t feel so isolated anymore.’ Either way’s a winner – so now we just have to look forward to the 26th.

And Rick, keep sending those reminders please … you can tell from this post that my brain is suffering from Swiss cheese syndrome, so I need all the help I can get. Thanks!

 

 

 

 

 

 

 

 

 

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
Tags: , , , , , , , , , , , , , , , , , , , , , , , ,

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!

Wow – where did that come from?

June 27, 2016 at 1:38 pm | Posted in rheumatoid arthritis (RA) | 3 Comments
Tags: , , , , , , , , , , , , , , , ,

I haven’t posted for a while because I haven’t really had much to post about – health-wise I’ve been good. I’ve been a bit stiff in the mornings for the last few days, but nothing to write home (or indeed blog) about. Then today I woke up stiff and tired, having had a migraine try to start in the night (successfully stopped with drugs!) I really couldn’t wake up for an hour or so this morning – not literally, I got up, had breakfast, went to work, but felt really brain fuggy. (Can’t blame the methotrexate as I take it Monday evenings and it’s Monday morning!)

Then when I got up to go to lunch, or rather tried to, I started to stand up and ended up collapsed back in my chair. No dramatic pain or anything – I was just so all-over stiff that joints weren’t doing what they were supposed to do! So after sitting a minute or two and flexing various bits (luckily on my own in the office so no one to see how weird I looked) I managed to get up and go for a short walk. I’ve been trying to walk about 1.5 miles at lunchtime but today I didn’t make 0.5 miles! The stiffness did mostly ware off but I was left with significant pain in the good ol’ left knee, where I usually get a flare if I’m going to have one. I’m really hoping I’m not!

Perhaps it’s the stress of ‘Brexit’ – the ‘Wow – where did that come from?’ title could also apply to that and it seems that partially to blame (apart from racists, stupid people and perhaps a handful of people with genuine concerns) may be the polls (as opposed to the Poles, which a lot of East Anglia would like to blame, I’m sad to say). The polls kept saying we’d vote to stay, so people decided that it wouldn’t matter if they had a ‘protest vote’. ‘Let’s vote leave, just so the government can see we’re annoyed with them – we’ll end up staying anyway.’ I’ve actually heard people say it, and then there’s this http://article in the Independent. No doubt people like this thought they were being terribly clever and original, but you get enough people doing the same thing (not that original after all guys) and guess what, we end up voting Leave.

Never mind the embarrassment of waggling stiff limbs about randomly in front of people, I feel embarrassed to be English at the moment! (I would say British but the Scots voted to stay!)

Hopefully the stiffness and knee pain will be a short-term issue. Alas, the same cannot be said for the state of Britain!

So angry my glasses are steaming up

February 22, 2016 at 12:23 pm | Posted in rheumatoid arthritis (RA) | 4 Comments
Tags: , , , , , , , , , , ,

At the behest of the hospital rheumy nurse, I’ve just been down to the surgery to have a blood test, since as I’m hopefully now getting more methotrexate into my system with the injections, they need to make sure that I’m not overdosing.

I got to the surgery, I went over to where the board hangs up where you collect your number and wait to be called for a blood test – no board. I headed back to the reception queue – the MASSIVE reception queue, the slow reception queue – in fact it wasn’t slow, it was immobile.

It took me 20 minutes to get to the front of the queue to say, ‘Where are the blood tests?’ only to be met by a blank look and, ‘Isn’t there a board …’

‘No, that’s why I’ve been standing in this queue for the last twenty minutes.’

‘Oh … well one young lady went home sick so perhaps they’re not doing them.’

‘It would have been helpful to put a notice up to save me queuing, and probably halve your queue at the same time!’

‘Oh, isn’t there a notice up? I’ll talk to someone about that right now.’

‘Don’t bother – they finish at 11 anyway and it’s 11 now.’

At least I needed to go anyway to get a printout of my new repeat prescription with the Metoject pen and then put that in to be reviewed by a doctor.

I sympathise with the sick phlebotomist; I sympathise with the rushed off their feet reception staff; where I draw the line is attempting to sympathise with blatant incompetence. How much effort would it have been for one of the receptionists (perhaps while she was getting coffee, as one of them did while I was queuing) to write a quick note saying, ‘No blood tests today due to staff sickness. Please try tomorrow but ring first.’ Not long I suggest. It also wouldn’t take long to inform all the receptionists (all three of them) that there are no blood tests, and yet clearly that hadn’t been done either.

It’s a good job I wasn’t going for a blood pressure check as my blood is boiling – at least it’s keeping me warm on a cold day!

Hospital appointment – only 7 months late

November 20, 2015 at 9:27 am | Posted in rheumatoid arthritis, rheumatoid arthritis (RA) | 13 Comments
Tags: , , , , , , , , , , , , , ,

I’ve just had my April hospital appointment – well, it was supposed to be in April – then they moved it to June .. then they moved it to August … then they moved it to September … then they moved it to November… but this time it didn’t get cancelled. Right, I thought, I’ve seen no one at the rheumy department in 13 months, I’m going to make a LIST of things that I need to ask about, ’cause my memory’s shot. I know doctors hate lists but when you have to wait 13 months for an appointment you don’t want to forget anything, right? Right! Shame I forgot that I’d made the list then, and consequently forgot to ask about the dry mouth, although I think I covered everything else… except memory problems of course. I don’t think a rheumy clinic is going to be that interested in my forgetfulness anyway!

Everything else was more pain and stiffness in the hands and feet than previously, two nasty flares in my knees over the past year and a lump on my finger.

For the first two, my methotrexate has gone up to 20mg from 17.5mg. The nice boy (sorry, young man – I’m getting old, all the registrars look like children to me) was slightly horrified that I started off eight years ago on 5mg (or possibly 7.5mg) as they’re now much more aggressive and he said they’d never start anyone on less than 15mg so really 20mg is nothing. He also said if stomach upsets were a problem them can move me over to a self-injecting pen. I wasn’t too keen on that idea – I’ve only had two or three stomach upsets over the year that MIGHT have related to MTX and it’s possible that none of them did – I have a dodgy tummy anyway!

For the lump on the finger, he said since it was on my left middle finger and I’m left-handed it was probably just where I rested a pen. I said, ‘Who writes these days?! I almost never hold a pen! I type everything,’ to which he laughed, agreed and basically said, ‘Dunno’. It’s not painful and it’s not growing alarmingly so ‘dunno’ is fine for the moment!

The ridiculousness of the DAS score was brought home to me yet again. As the nice boy put it, ‘You might as well be amputated below the knee as far as that’s concerned’ and one of my main problems is feet! Daft! It also included a rating of how has the RA been THIS WEEK. Who gives a monkeys about this week – I haven’t seen anyway for 13 MONTHS! He took that on board too, bless him, and although I scored ‘low disease activity’ with four sore joints and pretty good thank you for this week, he accepted that my RA wasn’t under control if I’d had two bad flares this year; hence the MTX increase.

He also said if the appointments started slipping again, I should phone reception and point it out and they’d stop it happening – my faith in reception, on a score from 1 to 10 – zero. Not that I really think it’s their fault – they’re just the front line when it keeps happening and I phone up and say ‘Oy’ and they say, ‘Not our fault,’ which it’s not!

Anyway, I’ve got a nurse practitioner appointment in February – let’s see how much that gets moved – not that I need it in February – May would be more sensible, but I’m hesitant to cancel!!

NICE is as blinkered as ever: nothing has changed since 2010

June 25, 2015 at 6:34 pm | Posted in arthrits, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
Tags: , , , , , , , , , ,

In January 2010 I ‘reported’ that NICE were refusing to consider treatment of early RA with biologics because one had to ‘fail’ on two other DMARDS first, which would take a minimum of six months, more likely a year. NICE (amusing standing for National Institute for Clinical Excellence, actually have very little interest in clinical excellence; their job is to stop the NHS ‘spending too much’ on drugs etc.)

Now, five-and-a-half years later, after threatening to take biologics away from RA patients altogether because they weren’t ‘cost effective’, NICE has kindly decided to leave things as they are for the moment, according to to a joint press release from NRAS, Arthritis Care and the British Society of Rheumatology (BSR), which you can read here on the BSR website (and also on the NRAS and Arthritis Care sites).

I was pleased to see that Professor Simon Bowman, the President of the BSR, is saying pretty much what I was saying five-and-a-half years ago … because there’s a chance that people at NICE might actually listen to him! He says, quoting the press release:

‘It is false economy not to treat patients with moderate disease with biologic therapy when standard DMARDS fail, as these patients will be higher users of healthcare resources. These patients will require more attendance to primary and secondary care, and are more likely to develop co-morbidities such as osteoporosis, heart disease and have more surgery.’

The press release continues with more things I was saying back then: ‘They are also much more likely to lose their jobs, causing financial hardship […] The personal costs to the individual, the NHS, the impact on the rest of their family and the direct cost to the exchequer in lost productivity and benefits claims is massive.’

Judi Rhys, Chief Executive of Arthritis Care, added ‘NICE does not take account of costs such as reduced hospital bed days or the benefit of people getting back into work. We believe those with moderate RA require better access to these drugs. Not only will it improve lives, but it also makes economic sense.’

Here here! It’s good to see the charities fighting back in language that NICE might understand! Of course it won’t alter the problem that the NHS is completely ‘siloed’ from the Department for Work and Pensions who deal with benefits etc., social services etc. So as far as NICE is concerned, as long as the NHS is ‘saving money’, the fact that there are huge costs to individuals, businesses, the DWP etc. is really irrelevant.

Next Page »

Create a free website or blog at WordPress.com.
Entries and comments feeds.