Tags: arthritis, blood test, doctor, GP, hospital, methotrexate, MTX, NHS, R.A., rhematoid arthritis, Rheumatoid arthritis, rheumatology, surgery
The hospital has decreed that patients on methotrexate for RA no longer need monthly blood tests – they will now be three-monthly instead. Now I don’t have a problem with having my blood tests every three months – as yet I’ve never had a single blip in my tests and if the hospital say three-monthly is safe I suppose I have to believe them and not just assume this is purely a cynical money-saving exercise: ‘Hey, what’s the odd life lost compared to a few thousand pounds saved, eh? Let’s do it! Right lads, down the pub …’
What I do have a problem with is the fact that they can’t book tests three months in advance, and yet we’ve been told to contact the rheumy nurse to make the next appointment. There IS NO WAY to contact her except by making an appointment to see her … a bit of a circular argument! My sensible and lovely nurse realised this straight away and in fact pointed it out to me with a comment on the lines of ‘I’ve told them ALL individually in reception, so don’t take any nonsense if they tell you that you should have booked it through me!’
OK, so that’s hopefully sorted out even before it becomes a problem, but how crazy that we can’t just book the tests when we see the nurse!
The surgery have also arranged monthly ‘walk-in clinic’ tests for the months we don’t see the rheumy nurse … but that’s a whole nuther story … a post to come in a day or so.
Tags: arthritis, Arthritis Research UK, fundamental science, joint pain, medicine, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), Rheumatoid Arthritis Pathogenesis Centre of Excellence, rheumatoid arthritis research, rheumatology, scientific research
Look around the RA blogging community for a while and you’ll see some consistent themes. One is that it’s hard to explain to Joe Public what RA is – another is that most of the drugs are by-products of research into other diseases (methotrexate for example, and most of the biologics were developed as cancer treatments) and there is little fundamental research into RA.
That picture has been getting better over the last few years, and it’s taking another step in the right direction. Arthritis Research UK, along with the Universities of Glasgow, Newcastle and Birmingham, is funding a major new initiative, the Rheumatoid Arthritis Pathogenesis Centre of Excellence, to be run from Glasgow. The centre’s main focus will be on why RA starts, why it attacks the joints, and why it doesn’t stop. These are fundamental questions, basic science, but the answers, if they can find them, are likely to lead to a host of potential new treatments.
As I understand it the ‘centre’ is virtual rather than physical, but it will mean the three universities and other partners undertaking major collaborations into these fundamental areas.
Science is a slow business – results may be a long time coming – but it’s great to know that there is a good level of funding for this fundamental research into rheumatoid arthritis.
And remember – if you’re based in the UK too, you can get 20% of Physicool products until 9 November 2013.
Tags: coupon, discount, Physicool, UK
Further to my review of a Physicool cooling bandage, I’m delighted to announce that the company are offering 20% off to anyone putting in the code ‘penguin‘ into the coupons option at the checkout, until 9 November 2013.
At the moment this only applies to readers in the UK.
Please note: I do not work for this company or stand to make any profit from this in any way. I found it a useful product and if you choose to use this promotion then I hope you do too!
I have had very severe ankle pain since Thursday – but I don’t think it can be RA because it’s on the outside of my ankle. My anatomy is pretty poor but I’ve done some Google searches and some reading and I don’t think the outside ankle joint is a synovial joint – no synovial joint, presumably no RA? Could it just be a sprain? I don’t see how because I have no recollection of spraining it or going over on that ankle or anything, so I really don’t know what’s going on.
I have been pretty unsuccessful at keeping it up – I did keep it up for most of Friday and cancelled work and two different plans to see friends, but when it came to cancelling our wedding anniversary plans I … erm … forgive the fun … put my foot down! We had a lovely wedding anniversary lunch in Norwich on Saturday – but maybe pounding round the shops beforehand wasn’t such a great idea? Although having said that, we did buy a new bed, which is something that’s been on the list for quite a while and which could help with all these problems, since it’s always worst at night.
Now there’s a thing – I’d figured (until I started looking up ankles in Wikipedia etc.!) that it must be RA because it was either RA or osteo and osteo would be worse if I walked on it, not at night in bed … but now I’m thinking perhaps I’ve just sprained something.
Any thoughts to help out a confused Penguin would be much appreciated!
Of course, like the recent hip pain, I’ll be delighted it if it isn’t RA-related as I needn’t start panicking that the methotrexate isn’t doing its job!
Tags: ankle, bandage, combination pack, coolant, cooling, cooling liquid, evaporant, inflamation, inflamed, knee, knee pain, Physicool, seal, wrist
The nice folks at Physicool asked me to review their cooling bandage combination pack. I said I’d be very happy to do so provided they didn’t mind a completely honest review – and they kindly agreed and sent me a pack to try out. So here goes:
What is Physicool?
Physicool is a rapid evaporant which can be poured or sprayed onto their bandages. The liquid quickly evaporates into the air, drawing away the heat from the inflamed area and creating a cooling effect,
What is the combination pack?
The combination pack that Ian at Physicool sent me consists of a 3m long bandage and a 500 ml bottle of coolant. The bandage comes in its own small foil packet with coolant already applied, and that packet and the coolant bottle are packaged in another foil packet.
Opening the packs
On first use the seal along the top of both packages has to be torn off. My arthritis hands struggled slightly with the larger pack, but not much, and the smaller pack tore easily. Each pack is then sealed with a typical push-together plastic seal – not sure what those are called but you hopefully get the idea! These open easily.
Applying the bandage
The bandage has to first be squeezed to remove any excess evaporant, but it doesn’t need a very hard squeeze so that didn’t prove a challenge. I used the bandage on my knee – although I had a ‘size A’ bandage which is more appropriate for wrists, ankles etc. The knee was where I had the inflammation though, and actually the size was fine. The bandage is neatly rolled inside the bag and easy to unwind and apply. It has a velcro-style strip which can be attached to itself or to the bandage.
What I liked
- It works. It cooled the inflamed area really, REALLY fast and that meant the pain went away fast.
- The bandage is easy to apply.
- I only needed to use it for half an hour – after that I took off the bandage and my knee still felt really cool for another half an hour. But it should last for up to two hours – and it can then be re-charged and you can carry on using it.
- It’s portable. I use an ice pack normally but I can’t use that at work because we have no freezer in the building! This is something I can keep at work, and also take on holiday. Fantastic!
- The coolant supplied with the bandage should last for up to two hours of use – so I’ve got four applications in the bandage before I need to recharge.
- There should be enough coolant in the recharge bottle for around 8 more thirty-minute uses.
- The packs are quite easy to open and the bandage was easy to apply and it didn’t slip once I’d put it in place.
What I didn’t like
- It’s wet. Well, it would have to be of course, because if it wasn’t it wouldn’t evaporate! However, because it is a rapid evaporant it doesn’t feel wet for long.
- It has a smell. It’s not a bad smell, but it’s definitely a smell. No smell at all would be perfect, but if it has to smell this isn’t a particularly unpleasant one – just very slightly hospitally!
- It needs to be exposed to the air to work effectively – otherwise it can’t evaporate so well, of course. This means that whichever bit of you is using the bandage has to be uncovered. Not a problem if you want it to be cool, you may think, but what if the knee’s the problem and the only way to ‘expose it’ is to roll up your trousers? that leaves you with a cold ankle and calf.
- Because it needs to be exposed to the air, when I used it on my knee and then put my leg up, the underneath part was against my footrest, not exposed to the air. This meant I had a wet patch for a while under my leg after I took the bandage off. It did evaporate though!
Do the benefits outweigh the irritations?
DEFINITELY! Now that I know what the ‘problems’ are for me, I can work around most of them. I can make sure I have a small blanket to cover any bits I don’t want exposed, and if I put my leg up, for instance, I can put it on a foot stool and leave the actually knee unsupported to avoid a wet patch. As to the smell and the temporary wetness – considering how incredibly effective this is at cooling the painful area – I can live with those.
Want to know more?
Tags: blood, blood test, GP, phlebotomist, Rheumatoid arthritis, rheumatology, rheumatology nurse, surgery
I mentioned to the facilities manager as I left work this morning that I was off for a blood test. When I saw him later he asked, ‘So did they manage to confirm you had blood then?’ Well – actually it was a bit of a struggle! The first attempt to prove I had blood was a dismal failure – in went the needle, out came … nothing. The rhuemy nurse waggled the needle about – nothing happened … except that it hurt … she waggled it about some more … OUCH! We mutually agreed that perhaps trying another spot would be better. It wasn’t. Hmm … I’d walked in rapidly and everything, the blood should have been flowing … but perhaps the problem was that it had all rushed to my head a moment before!
‘Why would it do that?’ I hear you cry. Because she’d just told me that the system of monthly blood tests was changing – in fact it was going. The new guidelines from the hospital are that we only need three-monthly blood tests done by the rheumy nurse. Well OK … that’s fine by me… but here’s the rub.
At the moment I go in for my blood test, have a chat about my arthritis and general health, query anything that’s bothering me rhuemy-wise (usually not a lot, ’cause I’m lucky most of the time!) and book the next appointment. Now the appointment times are being reduced, so I will only see her every three months and have less time for a chat about how things are going because she will have less time per patient, even though she’s not seen us for three months. On top of that – she can no longer book the next appointment – because, mind-bogglingly, ‘the system’ won’t allow booking three months ahead!
I do wonder how much this has to do with the computer system and how much it has to do with the fact that the further in advance appointments are booked, statistically the more patients are likely to fail to attend! So now, instead of a simple month-by-month process of blood tests and booking, I have to remember to do an extra thing – phone about three weeks before my next test is due and book it.
Well, that’s not so bad – after all it’s only three-monthly, isn’t it? I’m still spending less time than I was before attending monthly? Not so fast … I am also supposed to attend in the two intervening months for a 2.5 minute appointment with a phlebotomist, who will just have time to say ‘Hi’, take the blood and throw me out again – but on top of that, that won’t even be an appointment but a ‘walk in’. So if they’re not busy (hah, what are the chances of that, especially as I happen to know they’re short staffed) I could get seen straight away, but if they are busy I could be waiting who knows how long.
I told my nurse I would probably simply not bother attending the phlebotomy walk-ins and she said she thought I would not be alone – she’d heard the same from a number of patients! Of course you could say, and quite rightly, that we’re putting our own health at risk doing that and the service is there … but in six years I’ve never had a blood issue, and I do have a full-time job and I don’t have time to sit about for an hour waiting for a blood test, so … we’ll see.
Anyway, back to today’s blood test – when she scraped me off the ceiling and calmed me down and got the blood flowing round the body again, she was finally able to draw blood … which, I hope, will be fine as usual!
Tags: aches, arthritis, doctor, joint pain, knee, methotrexate, MTX, NHS, nurse, pain, physical therapy, physio, physiotherapy, R.A., RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stiffness, tiredness, work
I’ve just been to see my GP about a very painful hip that’s been bothering me for about four weeks now and getting worse rather than better. (There’s little point in going until one is a few weeks into the pain as they just say ‘Come back if it’s not better in a few weeks’ if you do that!) I had been getting rather low thinking that the methotrexate increase wasn’t working – but in the back of mind I was wondering if it was arthritis at all. When I saw my rheumy nurse for the monthly blood test a couple of weeks ago I mentioned the hip pain and said, ‘Honestly, I don’t think it’s arthritis – I have plenty of movement in that hip. I could dance the can-can if I had the legs for it!’
Still, it’s funny how one’s mind can almost split into two on things like this; (well, my mind can, anyway). One part of me was thinking ‘Of course it’s not arthritis’ while the other part was thinking, ‘Doom, gloom, despair! My methotrexate increase hasn’t worked – there aren’t many options open to me if it doesn’t … will I end up in a wheelchair?’
Anyway, I saw the doc today and she confirmed that it’s NOT arthritis (or at least very unlikely to be, anyway) – far too much movement in the hip. She has referred me for physio for a dodgy ligament (technical term, that!) but the chances are, she thinks, that it’ll clear up in another few weeks by itself – so I’ll just cancel the appointment, because that’ll probably take three months to come through anyway!
The hip pain (and associated other pains including referred pain in the knee) has been making my life a misery and continues to do so. I have to limit the driving I do because it’s incredibly painful – it also affects work, but I’m very very happy it’s (almost certainly) not arthritis … though I would like to know what on earth caused the ligament to get upset because I haven’t done anything to it!
Tags: aches, arthritis, canadian smocking, cats, cholesterol, coffee, crochet, decafinated, doctor, embroidery, GP, methotrexate, pains, Rheumatoid arthritis, Spanish
Well, I’ve been very remiss posting lately, I must say … so prepare for a very long and rambling post – perhaps I’ll put headings on so you can skip to the bits that you might find interesting! A combination of being very busy and yo-yo health – but fortunately, mostly busyness.
Anyone remember the game ‘fortunately, unfortunately’ where you’d take it turns to make sentences beginning with either fortunately or unfortunately, to make up a story? Well I was wondering whether to write an entire blog post like that, as my life seems to fit that pattern quite well right now – but thought it might get tedious, for you and me! Here’s an example though in case you have no idea what I mean:
Fortunately I have been doing a lot of fun things lately.
Unfortunately doing a lot of fun things is rather exhausting.
Fortunately I am, on the whole, sleeping quite well.
Unfortunately my Spanish teacher forgot I only drink decaf coffee and made me two fully ‘cafinated’ coffees last week, and I had a terrible night’s sleep (or lack of it) trying to climb down off the ceiling.
So – here we go with the update on the health front: About three weeks after my methotrexate increase in May I started to feel much better – go methotrexate! All those ‘regular’ niggly aches in my hands and feet were spirited away – I was still getting twinges and some knee pain (my knees probably being the worst affected bits of me) but no stiffness and none of that constant, nagging, draining pain. Hurrah! Unfortunately … sorry, just slipped into it there … it’s now about twelve weeks later and I’m feeling really pretty rotten. If you’re reading this then the chances are that I don’t need to describe that rotten feeling – you either know it only too well or you probably know me and I’ve moaned at you enough already – so suffice it to say I’m just not feeling good!
I’m hoping, and thinking it most likely, that it’s a temporary blip rather than that the methotrexate is ALREADY not doing the job.
On top of that I had my annual cholesterol test recently … hmm … suffice it to say I am now SERIOUSLY on a diet! :-( It’s very boring – actually that’s not really true – there’s a lot of GREAT and tasty food out there that’s fine for dieting, including much delicious fruit – but remember being a kid and having plenty of toys and games and friends, but you’re BORED and you DON’T WANT ANY OF THOSE? Well that’s how I feel right now about peipono melon and strawberries and lovely home-grown courgettes (zucchini) and all the other apparently delicious things in the fridge! I want caaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaaake! But fortunately (sorry!) the weight is coming off so that’s encouraging me to avoid the cake and stick to the melon! Also I do NOT want to be on Statins at 46!!
And so to cats – it’s been absolutely ages since I mentioned my cats (or indeed my poor hubby, but he might have to wait for another post!) They are still, of course, a central part of my life (as are you hubby-dear, before you read this and complain) and in fact we may have to rename Enormous Cat as Mr. Handsome, as he has dieted (or perhaps I should say we have dieted him?) way more successfully than his penguin, so far. I should get encouragement from him – he’s ten years younger in sprightliness and joi de vivre, although (like me) he does complain loudly that he’s hungry sometimes! And Tiny Cat 2 has really come on – she’s gone from being a practically feral scardeycat to a real member of the family – she’s even been known to sit on my lap for twenty minute at a time and stay quite happily curled up next to hubby when he’s sat down beside her. (Not often – but increasingly.)
Having fun (and occasionally working)
So … the rest of life: I had a lovely visit a few weeks ago to Bro and SIL’s new(ish) house in the Midlands – and we’ve visited some other friends and had some friends visit us; Hubby and I have been doing quite a bit of wildlife surveying which is fun; I’ve been doing a lot of crochet, trying to get something ready for a competition but I fear it’s NOT going to be close to ready – but on the bright side I did get third prize in our local show for my crocheted St. Edwards Crown last month, so that was nice. I have also been trying out ‘Canadian smocking’ which is fun. Just small samples so far, practising on an old gingham curtain, because that way I don’t have to mark out squares on the fabric! I have a cunning plan for a clutch bag based on this technique – but no hurry … and the Spanish is coming on nicely – although to be honest I can understand my Spanish teacher fairly well but plonk me down in Barcelona and ask me to translate and I’m sure I still couldn’t understand a word! Still – getting better! And in amongst all this fun, fun, fun – work has, thank goodness, picked up lately, so we’re busy there too. No wonder I’m tired!
Phew – sorry that was so rambly – I’m off for a lie down now … although Mr Handsome is trying to persuade me to feed him instead.
Tags: arthritis, consultant, diagnosis, doctor, flare, flare-up, hospital, knee, methotrexate, MTX, NHS, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
So I’m increasing my methotrexate. Flippers crossed that all will go well, I won’t get any nasty side effects (except maybe appetite loss, which would actually be a great benefit!) and it’ll keep my disease in control for at least another five years … but what if it doesn’t?
Well I asked my consultant this at my last appointment. He’d said, ‘I’m happy to increase your methotrexate to 17.5 and then to 20 but after that we’ll have to start considering other things if that isn’t doing the trick’.
So I asked him point blank what other things? ‘Oh’ he said airily, ‘there are lots of other things available.’ Well it’s now or never I thought and said what’s been on my mind for a while: ‘I know about biologics, but I won’t qualify for them on the NHS, will I?’ He looked a bit startled and then had to admit that no, I didn’t stand a chance. With my fabulous blood results that never show anything wrong, I’ve got no chance of being offered them at all at the moment.
So … where would I go if the methotrexate doesn’t work or causes problems? Well, I can add sulfasalazine to the mix and see if that does any good. ‘Some people are on three DMARDs’ said the consultant, but even he didn’t sound really convinced about it.
So what it boils down to is that with the usual NHS foresight, if the methotrexate increase doesn’t work and then the sulfasalazine doesn’t work, I would have to wait until I was in a really bad way, unable to work, probably unable to walk (given that feet and knee are the worst bits of me) before they’d even deign to consider me for other treatments. As usual, let’s not make the effort to keep people OK and working – let’s wait until they’re falling apart before helping, even though surely doing it that backwards way doubtless ends up costing ‘the system’ more in the end!
Well, back to crossing those flippers and hoping it never comes to that!
Well I had my annual appointment today with the consultant. He was running nearly two hours late, but I couldn’t complain; if I need that sort of time one day, I’ll want him to spend it on me, so I can’t complain when someone else needs his time and he gives it to them.
Having said that, I did get chatting to another patient over the tea and biccies they bring when they’re running outrageously late, and we ended up talking about Mr Consultant. ‘Is it just me,’ says I, ‘or does he always seem really bored?’
‘Oh my, yes,’ my new friend replied, ‘and he always talks at the notes or the dictaphone, not at you.’
We carried on in this vein for a while, and then talked of other things. It made the time go so much faster having someone to chat to, and luckily for me she was next in line after me, so I could chat to her right up until I was called in.
So I went in expecting a bored and fed up Mr Consultant to glance and me and start chatting to his dictaphone, but no such thing. Just like the experience I had with the nurse six months ago, it was as though he’d had a personality transplant. He was charm itself. We talked through my issues, and instead of saying ‘Well, the bloods are fine, go away and stop bothering me’* he listened carefully as I told him about the various flares in the last six months, examined me, and agreed that if I had had flares and needed steroids, clearly my disease was not fully controlled.
The upshot of it is that my methotrexate dose is increasing to 17.5 mg and we’ll see how we go from there.
I was able to tell my buddy on the way out that she needn’t worry, Mr Consultant was in a good mood today; I just hope she found the same!
* Not that he’s ever been that blunt, it just feels that way!