Tags: active, arthritis, consultant, diagnosis, doctor, GP, hospital, NHS, nurse, pain, patient, R.A., RA, reactive, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
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!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, knee, NHS, pain, physio, physiotherapy, prednisolone, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, steroids, stiffness
Well, yes, the knee flare was completely over … for a few days. I was just getting back into the swing of things, gradually building back up the length of my lunchtime walks from a few hundred yards to half a mile, to three-quarters of a mile … thinking I’d soon be back to the mile-and half … and then I woke up in the middle of last Friday night thinking ‘Ouch!’ I’m telling myself it’s not really flaring this time … I haven’t decided yet whether I’m lying to myself.
I certainly don’t want another dose of prednisolone just yet… if they’d even give me one, which I doubt. Having said I never have side effects, Carla happened to mention that sleeplessness and irritability are major side effects of pred, and guess what… I had a really sleepless and irritable week while I was on it – I just failed to attribute it to the pred. Now it all makes sense. And OMG, the night sweats!! I had no idea that was a side effect and I get hot flushes anyway so I just thought, ‘Coo, bad hot flushes, much worse than usual!’ I was slightly worried that this was more than hot flushes as the ‘sweats’ part was a whole lot more dramatic …again, I hadn’t realised this is a common side effect of the pred.
Now I’m still ALL for the steroids – the side effects, now I realise that’s what they were, were horrible, but the flare was much, much worse. The side effects I personally experienced were definitely the lesser of two evils and the pred let me carry on with my life and work, which I couldn’t have done without it. However, having said that, it does make the thought of another does quite unappealing if it can be avoided.
This time round the knee’s not hot, it’s not especially swollen and it’s not actually madly painful … it’s stiff but bendable, so really quite different to the definite flare I recently experienced.
Remember those knee-strengthening exercises I was doing, so that if I flared again I would have strength in the surrounding muscles and hopefully come out of it faster? No? Well you wouldn’t because I forgot to post about them. Unfortunately I have also forgotten to do them for the last few months, which is a pity really because I suspect that’s what the problem is now. As a horribly unfit person, having a bit over a week practically off my feet means I do need to build up those muscles etc. again and I think the minor pain and stiffness I’m experiencing is probably all about that.
So, spend goodness knows how long fighting for a doc appointment, to be told, if I’m lucky, that they’ll refer me to physio, which will take six weeks minimum, by which time I hope I’ll have recovered anyway, or just carry on and hope? I’m going for the latter at the moment. Wish me luck!
Tags: aches, arthritis, blood test, cats, doctor, flare, flare-up, GP, hospital, joint pain, knee, medicine, methotrexate, MTX, NHS, nurse, pain, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
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 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 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!
Tags: ear ache, immunosuppression, infection, methotrexate, MTX, RA, Rheumatoid arthritis
I hope those of you in the UK appreciate the Sun style headline! All will become clear shortly, but let’s start with a once upon a time, like all good stories. Once upon a time, two weeks ago in fact, I had ear ache pretty badly … I called the doc, saw the nurse practitioner, got antibiotics for an ear infection, was told not take my methotrexate that week so it didn’t fight the antibiotics (so to speak), took the antibiotics, got better (but not 100%) and that should have been the end of that … only it wasn’t.
Guess who forgot NOT to take the methotrexate? Bad Polly Penguin!
So anyway, Monday night the ear was niggling quite badly again (and I’d been off the antibiotics for a few days) so I thought, right, I’d better call the doc tomorrow and not take the MTX. Of course yesterday morning the ear felt fine. ‘Still call the doc,’ said wise hubby … and I really, really meant to, but we were very busy at work and I completely forgot. The ear was fine all day. So I thought right, better not delay the methotrexate any longer and I took it last night (and had a most appalling stomach upset, incidentally!)
‘Still call the doc about the ear,’ said wise hubby again, ‘you don’t want it flaring over the weekend when you can’t get a doc,’ so I thought I would … and in fact the ear was niggly again last night and this morning, so at least that reminded me.
Got through to the surgery very quickly. The system is normally you speak to the receptionist, they get a doctor to call you back and then, if the doctor feels the need, you go in and see them. In this instance, to my amazement, as soon as I said what the problem was the receptionist said, ‘Can you come in now?’ So I did. Fantastic, I thought – red flagged because of my immunosuppression – I didn’t think they did that.
And now, finally … for anyone patient enough to have read this far, we get to the baby doc shock! I went in and saw the doctor, who I think is a locum (they mostly are as we have terrible recruitment problems – heaven knows why, it’s a lovely part of the world). She must have been just out of training. She was really lovely, hadn’t had the softness knocked out of her yet, excellent bedside manner, sweet as pie (much sweeter than the original ‘Baby Doc’) and very helpful. She checked both ears, checked my temperature, asked about the history of the last couple of weeks … confirmed I actually had some infection in both ears (which was a surprise) and asked me to come back in a week or so just to make sure everything was OK after I’d finished the antibiotics. All well so far.
‘Shall I take my methotrexate next week, while I’m taking the antibiotics?’ I asked. Baby doc looked thunderstruck. Heck! So much for the red flag for immunosuppression – she didn’t even know I was on methotrexate. ‘I’m on methotrexate for RA,’ I elaborated. ‘The nurse practitioner said not to take it last week because of the antibiotics, so should I take it this time or not?’ (I admit I failed to fess up to having taken the MTX last week!)
‘You’ve got RA? How long have you been on the methotrexate?’ she asked.
‘Oh ages,’ I said cheerfully.
‘But you’re so young for RA!’
My turn to be thunderstruck. Yes, I KNOW GPs have to know a smidgen of everything and there’s a heck of a lot of everything out there, so they can’t be expected to be experts on anything; yes, I know that she’s only just out of nappies … sorry, school … sorry, college; yes, I know it’s a commonly held misconception … but … well, can I just say aaaaaaaaaaargh.
I didn’t say aaaaaargh to her. After all, she’d been very nice and helpful and I didn’t want to antagonize her … but I did point out that RA can hit at any age, and that mine had started nine years ago when I was 39. Unfortunately, perhaps, I didn’t really push the point … maybe I should have done. She’s probably still a ‘GP trainee’ and might have found the information valuable. Thing is, I was kind of in shock that she’d made that comment and I just didn’t react fast enough.
My apologies for the whole ‘RA’ and arthritis ‘community’ – I feel that I’ve let us down!
Tags: arthritis, Arthritis Care, Arthritis Research UK, chronic pain, cloudy with a chance of pain, RA, Rheumatoid arthritis, weather
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!
Tags: arthritis, hospital, injection, methotrexate, MTX, presription, RA, Rheumatoid arthritis, rheumatoid arthritis (RA)
I got an invoice in the post yesterday from the hospital, ‘Charge for prescription fee’. I haven’t had a prescription fro the hospital – what the heck are they on about? Then I thought, ‘Aha – it’s probably for my appointment on 8th Feb – the injection’ so I phoned finance and pointed out that I had a pre-payment certificate, expecting a whole load of argument about, ‘Oh, we don’t deal with those’, but no – it went very smoothly and she processed it through with the pre-payment certificate- all fine.
Then I took another look at the invoice for some reason – not sure why – and read it properly. ‘Charge for prescription fee 17.01.16 – as no credit terms are offered, please remit by return. If no payment is received within 30 days the invoice will be passed to our debt collection agency.’
Now I was pretty riled and slightly confused – but imagine how some poor little old lady would feel receiving that – OK, it’s not a large amount of money but the aggressive tone is enough to give you palpitations if you’re that way inclined. (I’m not, luckily – it just made me cross!) So I phoned the finance department back and said, ‘Oy, what’s this about 19th of January. I wasn’t there on the 19th of January.’ only (slightly) more politely. ‘Just a moment, I’ll check …’ <Hold music> ‘Yes, that’s right, it was processed on the 19th of January.’ Deep breath … ‘Yes, I know that … but I wasn’t there on the 19th of January so what is this for?’ ‘Oh … er…. we’ve only got the same info that you have – we’re just asked to process the invoice. So you didn’t have an outpatient visit?’ ‘No.’ ‘And you didn’t visit A&E?’ ‘No …’ Did I not just say I wasn’t there? Was that not clear enough? Obviously not. ‘Oh … well, would you like to check with pharmacy?’ So she gave me the pharmacy number and said, ‘But don’t worry, it’s processed on your per-payment certificate anyway.’ And I’m afraid that riled me even more – typical number-cruncher attitude – it doesn’t really matter what it’s for as long as the numbers balance. But I didn’t say anything except a polite thank you for the pharmacy number.
So I phoned the pharmacy – ‘Oh yes, it’s for an injection – it was sent to your GP on the 19th of January.’ ‘
‘It better not have been – because they can supply their own quite handily I believe – they don’t need them sent from the hospital. Are you telling me I’m being charged for something I’m not going to get because my next appointment is with the hospital, not the GP? Or is it perhaps a dose that’s been sent to the hospital rheumatology department, because I do have an appointment with them on 8th February.’ And of course that’s what it was. Hurrah.
Is it really that hard to put on the invoice ‘For hospital methotrexate injection on 8th February’ and take out the whole ‘You are an evil person who hasn’t paid instantly for something you didn’t even know about’ bit? Apparently so. Grrr …
And that only took 20 minutes to sort out and was a one-off. A very intersting post from Carla over at Carla’s Corner, on the time needed to cope with a chronic illness. I have a tiny weeny fraction of what she has to cope with and it still gets me grumpy and slightly stressed.
Tags: aches, arthritis, fatigue, flare, joint pain, knee, methotrexate, pain, RA, reaction, Rheumatoid arthritis, stomach upset, stress, tiredness, work
Well the knee is certainly a whole lot better and I’m now tapering off the steroids – I ended up with 11 days on 40 mg and then a taper down to nothing. The bad news is, not surprisingly, it’s not 100% better yet, and so far I haven’t managed a full day’s work since this started. Fortunately (not from a financial standpoint, but otherwise) we’re not that busy right now. I’m not too worried as that’s often the case in January and there are things simmering away that should come in over the next few months, and it does mean that if I just can’t manage a full day then so be it. At least the boss can’t get cross with me! (Having said that, I’m probably my own harshest critic, so I guess I can get cross with me!)
On top of the whole knee thing, yesterday I had what was pretty much certainly a full-blown methotrexate-related stomach upset, so I’m very glad now that I’m going on the injected stuff in a couple of weeks! Feeling OK today, if a little tired, but I was a complete wreck for a while last night – thank heavens for Imodium is all I can say!
Still, even if I don’t last all day today at work, I’m confident that I’ll be doing so by the end of the week, so things are on the up! I hope things are going well for all of you too.
Tags: arthritis, flare, joint damage, joint pain, pain, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA)
Yay – the swelling has pretty much all gone and so has the inflammation – I have pretty much full ‘bendability’ back in my left knee – woohoo … but yes, I’m still being careful! Of course if you have an injury, swelling and inflammation happens for a reason – to take more blood to the area to repair the injury, and to stop you moving it in ways that are going to cause the injury to worsen. Now in RA, given that it’s those helpful wee blood-cells that are actually doing the attacking and causing the injury, it kind of confuses things a bit, but nevertheless the swelling DOES stop you moving the joint in ways that are likely to cause more injury … and when the swelling’s gone, so is that warning and protecting system. And one thing hasn’t gone yet … the pain! Luckily the pain isn’t there all the time for me, which is great – I’m very, VERY glad about that – but it does mean that while I’m sitting at my desk pain-free and want to leap up and get a cup of coffee, it’s rather important to remember not to leap unless I want to end up an embarrassing heap on the floor!
Tags: Creaky Joints, EULAR, NRAS, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
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!
Tags: aches, Amoxicillin, doctor, methotrexate, MTX, NHS, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
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!