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!
Tags: accident, arthritis, being a burden, burden, crutches, flare, gratitude, horse, joint pain, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I was chatting in the kitchen at work today with a lass who works in the same building. She had an accident at the weekend and is hobbling around on crutches. As an active, sporty person she’s feeling very frustrated – who wouldn’t be – but I was slightly amused (in a sympathetic way of course) at her frustration with losing her independence. I offered to carry her coffee down the corridor for her and she said no, she’d manage. ‘I hate being a burden’ she said, ‘I’m normally such an independent person and everyone’s being so kind and helpful and I’m having to rely on lifts and things for everything, and of course I’m grateful but I HATE IT!’ I do so know the feeling – although I’m incredibly lucky with my RA that it comes and goes so must of the time I can remain independent, but when I can’t that continuous feeling of pressure (entirely internal, not from the people around me) to show gratitude, and that feeling of being a burden is just horrible! I don’t think I can explain that feeling to anyone who hasn’t experienced it – but I know many of you reading this will have experienced it too!
Then she said, ‘And everyone’s got an opinion! “Oh, you’ll have to stop doing that now this has happened” and “If you’d been wearing stronger body protection …” and “You shouldn’t have gone out on a day like that” and “If only you’d thought to do this first …”‘ In fact it was one of those unavoidable things – an ‘act of god’ if you like – something spooked her horse and she came off it. It happens. She wears body protection, she was in a lesson and it wasn’t that bad a day or the teacher (and she herself) would have cancelled. But yes, everybody has an opinion!
‘Oh, eat a spoonful of honey a day and your arthritis will disappear’ – ‘Oh, if you lost weight you’d have no arthritis problems’ – ‘Oh, my mother took a whisky every night and lived till she was 122 without any arthritis symptoms, maybe you should try that’ … Doesn’t that sound familiar? The being a burden thing and the everyone has an opinion thing are two things that I think bloggers on RA and chronic disease blog out rather frequently, but it turns out it’s not just ‘us’.
But at least horse lady will get a full recovery (or I certainly hope so) and no doubt ‘look back on this and laugh’ whereas we folk with chronic disease are a bit more stuck with it! Nevertheless, in true Pollyanna fashion, I’m still grateful (and without that burdensome feeling!) for the fact that my disease is mild and for all the things I can still do … and now I can add to that the fact that I’m very unlikely to be thrown off a spooked horse anytime soon, since I’m very unlikely to be on one!
Tags: aches, arthritis, doctor, exercise, flare, flare-up, joint pain, methotrexate, MTX, NHS, pain, R.A., RA, rhematoid arthritis, rheumatoid, rheumatoid arthritis (RA), rheumatology, work
I woke up yesterday morning with really bad pain in my hip/lower back, but by lunchtime it had passed off, so I had a lunchtime walk yesterday as usual, and very pleasant it was too, until about half-way round, when I got a very sharp pain in the side of my foot, just behind the little toe. (Same leg as the hip pain.) By the time I got back to work the pain was coming in short, sharp bursts lasting up to about 10 seconds and then was fine in between … but in between wasn’t very long! It was happening at least twice a minute. I took paracetamol and, three hours later, ibuprofen, but to no avail. We had to go shopping that night and I limped around the supermarket and then asked hubby to drive home as I was in too much pain. It wasn’t the worst pain I’d ever experienced but it was BAD. My foot just in that area was bright red and swollen, so that sounds like RA, but the odd coming and going of it doesn’t seem quite right. I THINK it was RA and I’m just a weird patient!
Anyway, of course being Monday last night was m-m-m-methotrexate night. I went to bed still in a LOT of pain, and woke up in the middle of the night thinking, ‘OOOH, my foot hurts’ and then again, some time later in the middle of the night, I think around 3:30, thinking ‘OOOH, my foot DOESN’T HURT!’ And it hasn’t hurt since. I have no idea what’s going on or why, but MAYBE it was lucky that that happened on a Monday and the methotrexate kicked in. I don’t think it’s supposed to work like that though, is it? It’s supposed to be a slow build-up, not a week by week thing. Perhaps it was just a short, sharp flare-ette and just finished then. Perhaps it wasn’t RA at all. They mystery of what is and isn’t RA is certainly … mysterious …
That reminds me of the time a few weeks ago when I was getting sharp pains and bad headaches that felt like they were on the outside of my skull. Not the first time this has happened, you may recall. Oh dear, I thought, I hope this isn’t giant cell arteritis – I think it’s that sort of symptom … and then I realised I was wearing a hair-slide that was being pushed into my head by my transcription headphones! Much relieved that I worked this out by myself and didn’t bother the poor, overworked GP with it!
Anyway, the good news is that the answer seems to be ‘not to flare’ at the moment, but I’m having a day off walks this lunchtime just in case it happens again!
Tags: #futureofhealth, arthritis, Conference, consultant, doctor, Future of Health, GP, Health conference, hospital, nurse, physiotherapy, R.A., RA
I’m on my way to the bright lights, big city of London for the Future of Health Conference 2014. And if Simon Stevens can pull off his Five-Year Forward View then he will indeed be a Wizard – and not just a Wizard of Oz.
The plan has a lot of good things. One is a focus on prevention – something really fairly new to the NHS if they’re going to take it seriously, not just say ‘Do you smoke? Do you want to stop?’ when you go for your flu jab at the GP, so that they can claim their smoking prevention bonus!
Then there’s a focus on patients gaining control of their own care. Sounds great – but what does it actually mean? Maybe I’ll find out on the train down as this is my planned reading matter.
Then they want to break down barriers in the NHS e.g. between GPs and hospitals, doctors and social services etc. Well I don’t think that’s anything new on the wish list front – it remains to be seen whether they can actually change deeply embedded cultures to get it done!
GPs are going to be given the option to combine with other specialists, e.g. mental health and social care, to form ‘Multispecialty Community Providers’. Hang on – isn’t this just the old consortium idea under a fancy new name? Sprinkle a little magic name dust over an old idea and see if it blooms into a beautiful new service.
There’s other stuff too – if you’re interested go and read my planned reading material link above – but those are the bits that resonate with me.
This tweet by the King’s Fund, an independent charity focussing on improving UK healthcare, focuses on where the money’s going to come from – always a good question in the NHS, and even more so in this economic climate!
Part of the new plan involves ‘managing demand’ and while I’m not sure I agree with everything in the link below, there are some good points, and some points I haven’t quite got my head around yet.
I can’t help thinking managing resources (not just human resources) and managing burnout should also be high on the agenda.
This is certainly not just an American issue. It’s something we patients see all the time. It’s also not just in doctors. Some of my previous posts about nurse practitioners and even physiotherapists would suggest that it’s ‘health care professional burnout’ that needs to be a concern, and is ladling on more models and targets etc. actually going to help with this? I doubt it.
And this from the King’s Fund again:
It’s suggesting that the NHS has too many doctors and not enough support staff including nurses, considering that the new plans focus on integrating more and using nurses for EVEN MORE stuff. I’m ambivalent about whether that’s such a great idea anyway, but if it’s going to happen then how could the NHS have predicted and trained the right number of doctors/nurses given that a) some bright spark comes in and shakes up the NHS every 3-4 years so no one can plan anything anyway and b) medical schools aren’t going to stop training doctors because they’re funded on how many doctors they train …
It makes my brain hurt! I’m so glad I’m not Simon Stevens. Good luck Mr Wizz. See you on Friday at the Future of Health Conference.
Tags: aches, arthritis, GP, hospital, joint pain, knee, NHS, nurse, nurse practitioner, physical therapy, physio, R.A., rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness
I can’t believe I haven’t posted since June. I wish I could say that that’s because I had nothing, RA-wise, to post about, but that wouldn’t be strictly true. In fact throughout June, July and August I probably did have ALMOST nothing to post about, but, although I’ve kept off those dratted antiinflmmatatories, things aren’t quite so hot now.
It’s just little niggly things at the moment – niggly knees mostly, as it always is with me, plus waking up in the night and finding my right-hand index finger is very stiff and very painful. I have a horrible feeling this relates to my increase in crocheting lately, and I’m wondering if I’ll be able to complete my Diploma in Crochet … although thankfully there’s no time limit so if it takes me a week to crochet a 4″ square, so be it!
And talking of crafts, I’ve just been to the Knitting and Stitching Show at Alexander Palace – a 3.5 hour journey there, mostly by coach, a 4 hour journey back (due to the coach almost breaking down but managing to limp to our drop-off point in the end!) and a loooong day browsing the exhibitions (so-so), trade stands (fabulous yearly treat for a rural type with few local craft shops!) and enjoying a workshop too (Dorset button making). We went on the Friday and it knocked me FLAT for the rest of the weekend but it was worth it!
I also had my hospital appointment not long ago. To my astonishment it went very well – they called us in individually, so again we didn’t have to line up like ducklings behind the mother-duck nurse, and there was a new rheumy nurse there (well, new to me, and young) who was absolutely delightful – she hasn’t had the soft, caring side knocked out of her by working too long for too little and too many hours at a time … yet. She was very sympathetic and very helpful about the knees, which were playing up at the time, although more from the medical (go on, have them drained, it’s not that bad – hah, like she’d know!) side than the practical ‘help yourself’ side of exercises, cold compresses etc. And thereby lies, in my non-expert opinion, one of the biggest problems with any giant organisation such as the NHS. It’s inevitable that everyone has their own specialties, but they do tend to get siloed. She didn’t offer me physio – but then again … I didn’t ask. In all honesty I didn’t feel I needed it, and perhaps neither did she! I know how to manage the low-level pain now – sometimes I may need reminding, being a dopey penguin, but I do know!
And that lack of ‘joined up thinking’ leads to the next thing – I got a letter recently asking me to ring the surgery to discuss ‘some blood results from the hospital’. Slightly worrying that – especially as it arrived on a Thursday, I didn’t get it until Thursday night and I was off to London on Friday, so couldn’t ring until Monday. Anyway, I rang on Monday. ‘Oh’ says the doc. ‘They want us to check your cholesterol risk.’ And ‘quite right too’ I hear you say. ‘You’re overweight and you should do something about it and they’re right to be vigilant.’ Well, yes, but here’s the thing … the surgery themselves had just checked my cholesterol about three weeks before and established that I was low risk.
If the nurse at the hospital had asked me about it, instead of sending me off for bloods and not even telling me she was checking that, I could have said, ‘They’ve just done that at the surgery. This is my level, I’m apparently low risk.’ Instead, lovely as she was, she wasted the following resources:
- A blood sucker (aka phlebotomist)
- The lab doing the work on the cholesterol
- The hospital secretary
- The surgery secretary who sent out the letter
- The GP who had to call me back and discuss what we’d discussed three weeks before
‘Joined up thinking’ is no longer the buzz phrase of the day, and it sadly didn’t work when it was, but a little bit more of it would be a wonderful thing.
Tags: aches, anti-inflammatories, arcoxia, arthritis, doctor, flare, medicine, methotrexate, MTX, R.A., RA, reducing tablets, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, stiffness, tablets, weather
You may have noticed I haven’t actually said anything much about my RA for a while … well that’s because it’s not really affecting me in a big way, and hasn’t been for a while. And yes – I do appreciate how bloomin’ lucky I am!
I saw my consultant the other day and for once we were in agreement – things are going well both from his point of view (bloods and 2-second examination) and mine (how I actually feel). These two things rarely combine but this time they did, and what’s more, six months ago when I saw the nurse things were going well too, so we’ve made the decision to cut back on the tablets.
I must say I felt awfully brave doing that … still do actually, it’s scary how dependent one gets on the comfort of knowing that if you keep taking the tablets things are mostly OK. It’s only the anti-inflammatories that I’m cutting back on at the moment, and the idea is that if that goes OK I’ll step down my methotrexate next time I see him. In fact, I’ve cut out the anti-inflammatories altogether for five days so far and things are going well. Apart from the odd twinges in my bad knee and occasional mild stiffness and achiness if I wake up after a cold night, I’ve had very little indication that they were making any difference. Unlike the methotraxate, there was no build-up with the anti-inflams I was taking, so the good news is that I can cut them out for the moment but if I have a flare, or just a bad, achy day, I can take one whenever I need to.
Of course we’ve had five days of glorious sunshine and DRYNESS – which I’m convinced makes a difference, so we’ll have to wait and see how things go when that stops – and given it’s the weekend that will probably stop tomorrow! Watch this space! I’m really hopeful though that things will carry on going well and I can reduce the methotrexate in six months’ time!