RA Blog Week Day 3: Advice

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


‘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.


‘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
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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
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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
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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
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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.

Are you tired of not having your fatigue concerns taken seriously?

June 17, 2015 at 9:03 pm | Posted in arthrits, arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis, rheumatoid arthritis (RA) | 1 Comment
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Last year I attended the Future of Health 2014 Conference, having applied to be a ‘citizen journalist’ and tweet about the event. There was a big focus there on listening to the patient, and that’s certainly not an isolated event. The excellent Creaky Joints report on the EULAR conference makes it clear that this is a much bigger thing. The thing that especially caught my eye was that FINALLY we’re being listened to regarding fatigue. Fatigue is not correlated to disease activity, a study by the UK’s National Rheumatoid Arthritis Society, which I participated in by answering a survey, found; in other words, I can have mild, controlled RA and still be bloomin’ … erm … exhausted the whole time! There’s a good chance that if you’re reading this blog you’re an RA sufferer, and if you are there’s a very good chance you already knew this, but I’m quite sure most of the medical profession did not – and does not, and it is through listening to patients (or patient-led societies) that they are finding out.

Combine this European-wide event with all the patient activity at the American College of Rheumatology event last year, and the fact that even in my little provincial hospital the consultant was genuinely wanting my opinion on things last time I saw him, and I really do feel there’s something positive going on.

I know it won’t be perfect, I know there are still plenty of medics out there who don’t understand RA at all, and even the specialists will often think what’s on their charts is more important than how we feel, but it certainly seems to be a move in the right direction.

The NRAS survey highlighted in the Creaky Joints report indicated that 66% of patients surveyed (in the UK) were never asked about their fatigue and 79% said it had never been measured. At the moment though, there is no generally accepted measurement of fatigue, so any fatigue studies are a bit hard to take seriously. The next stage should probably be to agree a way of measuring fatigue so that studies can be sensibly compared and conclusions reached.

And now NRAS has another survey – this one is all about how much input or influence RA patients have in their treatment decisions, so if you’re based in the UK and have been diagnosed in the last ten years, go ahead and fill it in; your views could form part of the next EULAR conference; who knows!

Tooth aches and irritations

May 31, 2015 at 3:20 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis, rheumatoid arthritis (RA) | 10 Comments
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Well, the last few weeks have certainly been interesting … in the Chinese curse kind of a way, although there have been some great highlights including a couple of painting classes and a textile workshop. Mainly though, things have been rather dominated by toothache … and irritation!

I had a niggley toothache, not bad, just on and off, but with a lot of sensitivity to hot and cold as well, so eventually I bit the bullet (ouch) and went to the dentist – who ummed and erred a bit and said that hopefully it just needed a bit of filing down, but if it didn’t it ‘could be nasty’. Not the words you want to hear from a dentist really. He said if the filing down didn’t work, to come back the next day … it didn’t; I did.

Now bear in mind we’re extremely busy at work at the moment and the dentist is in a village up the road and it takes around 20 mins to get there from work. So a visit takes at least an hour all told – and I had to do two in two days – frustrating! On the second visit he did the briefest of examinations and said, ‘Reckon it’s an abscess – have some antibiotics’ … so I did … but I was cursing because I thought, ‘Why didn’t he just give them to me yesterday, and save me an hour?!’

I got back to work, opened the packet of Amoxicillin, glanced at the leaflet inside and it said, ‘If you’re taking any of these medications, talk to your doctor first’ and one of them was methotrexate!

Muttering under my breath I picked up the phone and phoned the dentist – and had to waste more time trying, and failing, to explain what the problem was to the receptionist. Understandably the dentist wasn’t available immediately – no doubt he had his hands in someone’s mouth – so I waited for him to call back … and waited … and waited …

I knew there was absolutely no chance of getting hold of a doctor that day and, as the tooth was getting worse, I didn’t want to wait until the next day and then I had a brainwave … or perhaps a brain storm (in the old-fashioned sense!) I thought, ‘Hang on – isn’t that 111 number supposed to be the NHS non-emergency number – they can answer queries, I’ll ask them.’ I took a brief look at the website and it said ‘111 is the NHS non-emergency number. It’s fast, easy and free.’ Sounds good, I thought, so I rang it. It was answered very quickly and as I was talking to the pleasant lady who answered I noticed on the same page as ‘non-emergency number’ it said, ‘You should use the NHS 111 service if you urgently need medical help or advice but it’s not a life-threatening situation.’ I felt a bit embarrassed because clearly it wasn’t that urgent, and even more embarrassed when I explained the issue and she said, ‘What symptoms are you having?’ And I said, ‘None – I haven’t even started taking it yet!’ She was lovely though and put me through to ‘a clinician’.

Now I’d done a bit of a checking up on the internet first and the issue is that Amoxicillin can cause the methotrexate not to be properly excreted from the body, resulting in a potential build-up of toxins from the methotrexate. I could find no indication of a) how much MTX you’d need to be on to have a problem b) how much Amoxicillin you might need to have a problem or long you’d have to be on it for or c) How long the effects might last, since I’d had Amoxicillin only about 3 weeks ago for the sinus infection that was part of the reason we failed to get to Barcelona!

The clinician came on the phone. He clearly had not the foggiest idea why it would matter that I was taking MTX and Amoxicillin, so I briefly explained as above. ‘Well,’ he said, ‘you seem to know the answer then.’ Helpful … not! So I pointed out that no, I didn’t know the answer, since the question was having been prescribed it, should I or shouldn’t I take it? What was the level of risk? And so on …

‘Oh … er … um … well’ he said … and so on for a while … ‘I think I wouldn’t risk it really. You need to talk to your dentist.’ I explained I was trying to do that and would continue to do so! I felt very strongly that he really didn’t have the foggiest notion and was just covering his back, as if he had said, ‘Oh I think it’s fine’ and then I died of toxic MTX build-up, that could have been his career down the tubes … and I suspect it was a career that had barely got off the ground so far anyway.

So I called the dentist back – receptionist again – and to look like I wasn’t nagging I said I had a bit more information that I’d previously forgotten to mention (which was true) and explained that I’d also had Amoxicillin in April and wasn’t sure if it stayed in the system. Given that Mr Dentist phoned me back almost immediately this time, I can’t help wondering if she’d completely forgotten to pass on the message the previous time.

‘Oh,’ said Mr Dentist, ‘I’ve got some different information from you … as I understand it, the Amoxicillin can cause a build-up of methotrexate in the system.’ I said yes, that was the information I had too and he said that that wasn’t the message he’d been given from the receptionist. I bit my tongue, swallowed down the sarcy comment on the tip of it and said sweetly, ‘Oh dear – I obviously didn’t explain it very well then,’ which in fairness was probably true!

‘Well,’ he said, ‘You’re a sensible sort of girl. I’m sure you can monitor things and if there’s any problem, see your GP.’ I pointed out that I had no idea what sort of problems this toxicity build-up might cause. ‘Hmm, neither have I,’ said he, ‘you’d have to ask a doctor!’

So – I’ve now lost count of how much time I’ve wasted and really I don’t feel any nearer to knowing if I should be taking the damn stuff or not – but he had looked it up on the drug interactions database and said it didn’t appear to be a major problem, so I started to take it anyway.

The next day I decided that perhaps I should ask the doctor – after all, it’s only a phone-call. With the new surgery system you have to have a phone call first from the doctor and then they see you if they feel they need to, and I was sure they wouldn’t need to for a simple question.

Unfortunately I forgot to call until about 10 am so most of the appointments had gone. I explained the situation to the receptionist and said was there any chance of a call back and she said she’d have to ask someone. Now he was either new or a locum, not sure which, and for reasons best known to himself he decided he’d see me! Aaaaaaaaaaaaaargh, more time wasted!

So I went for my appointment and the first thing the pompous little man said was, ‘I don’t really believe in prescribing antibiotics anyway, but as you’ve been prescribed them … I mean normally the body can manage to heal itself without them. Of course there are some circumstances where one might have to, but it’s quite rare …’

I replied, ‘On the one hand, tooth abscess, notoriously difficult to get rid of; on the other hand, immunosuppressed; don’t you think this might be one of those rare situations?’

He looked quite shocked to have his little lecture so rudely interrupted and, pomposity temporarily punctured, he replied, ‘Oh …er … well … probably in this instance, yes.’

So … back to square one – do I or don’t I take the dratted antibiotics? And the answer was … YES! Take them. I have to say though that even the doctor didn’t seem absolutely 100% sure! He did check the database again and he did say, ‘It’s not even a red warning’ and I had seen on the internet that the evidence for this toxic build-up was quite slight and I, I think, not in humans, so I was somewhat reassured in the end.

I’m glad to say that the tooth does seem to be clearing up, and I’ve not yet keeled over from any toxic build-up!

Hubby did point out afterwards that I could have probably saved a lot of time and effort by asking the pharmacist – wish I’d thought of that! Must try and remember for next time. Another sensible option might have been to ring the hospital rheumatology helpline – but I haven’t used it since my very poor experiences years and years ago and I don’t actually know the number anymore. Next hospital visit, I must get it!

Of course, all this makes it all the more important to go for my monthly methotrexate blood test … and therein (of course) lies another tale … for a later post!

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