Tags: aches, arthritis, doctor, fatigue, flare, flare-up, GP, joint pain, NHS, RA, rhematoid arthritis, rheumatology, sleep, stress, tiredness, work
No … probably not!
It’s just possible, maybe, perhaps, that I’ve sliiiiiiiightly overdone it this week! The plan for this week was that on top of work (quite busy) I would also have: the dreaded surgery Patient Panel on Monday – bound to be acrimonious as they’re introducing a telephone triaging system which has gone done like a lead balloon with most patients; my second Spanish lesson on Wednesday (a drive all the way in tew the ci’ee (aka Norwich); on Thursday morning a reunion meeting for a course I attended last year (again in the ci’ee); an Embroiderers Guild talk to attend on Friday night (in the ci’ee); a botanical drawing course all day Saturday (an hour’s drive away); and finally taking mum out for a mother’s day meal (in the ci’ee again) today.
I had also committed to growing a sour-dough started for ‘Herman the German Friendship Cake’, with the extra starter to be passed on to three friends on Thursday and the cake baked on Friday.
What I hadn’t considered when taking all this on was the possibility that BOTH the ‘junior penguins’ might be off sick (there’s a dreadful sinusitis bug raging around our wee town at the moment!) and that I’d therefore be incredibly stressed at work, trying to meet deadlines and earn money for three! Hubby suggested I needed a notice above my desk: ‘Penguin: Working to earn your sick-pay.’
Something had to give – and unfortunately it was the reunion, which I was really looking forward to. I obviously couldn’t have the time off work with the other two both sick! I went to the patient panel – and walked out after 1.5 hours, having spent the first 45 minutes wasting time discussing stuff we’ve been discussing since it started in 2008. It was just starting to get acrimonious when I said sorry, I had to go, but I’d made my points by then.
I was already tired by Wednesday but determined not to miss the Spanish lesson, as it was only the second one, even though my brain was pretty fogged by the end of the hour and I’m not sure much went in! I must remember to say no to the generous offer of Spanish-strength coffee when I arrive; I didn’t get much sleep that night due to caffeine buzz!
Nevertheless, the work got done, the cake got baked (and delicious), the talk got went to (see – told you by brain’s fugged – can’t do grammar proper at the moment) and the plants got drawn, but I have a nasty feeling I’m heading for a flare – or at least a fizzle! Well no, let’s be honest, I’m HAVING the fizzle and hoping it’s going to be a damp squib and not a flare!
At least mum’s driving us into the ci’ee today for our Mother’s Day meal so all I have to do is eat and pay. Think I can manage that!
Tags: aches, flu, flu jab, GP, medicine, neck pain, NHS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sniffles, sore throat
I have the post flu-jab sniffles, so presumably that means my immune system is going to respond and do its job in creating anti flu antibodies, which will be very handy if we have a flu epidemic this year … provided of course that it’s the ‘right’ flu. I had a slightly sore throat yesterday afternoon, post flu jab, and distinct sniffles this morning, but at least the big red lump on my arm is now a big red pinprick with a small red rash around it, and much less painful.
All more than worth it though if it keeps flu at bay! If the Flu Jab had a Facebook page I’d sign up to be its fan. (Oh lordy, perhaps it does … )
Tags: aches, arthritis, doctor, exercise, flare, flare-up, GP, joint pain, medicine, methotrexate, NHS, pain, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), steroids, stiffness
This perfectly innocent post title, no double entendres intended, is supposed to set the 1950’s scene for you. Maggie (friend and frequent commenter on this blog) has always said that the town where I live is like stepping back into the 1950s, and generally I reckon this is a pretty good thing. The 1950s is a pretty nice, cosy, friendly place to live; that is until you get hit by … da da da daaaa, 1950’s Doctor Man.
Alas, the knee has continued to flare and I decided, after having a lot of stiffness and pain yesterday, that I really should go back and say a) the steroids worked but they ain’t workin’ no more and b) can you ask the physio to have a look at the knee please? So I did. Of course, as I’ve mentioned before, if you make a ‘same day appointment’ (and the choice is same day or 2.5 weeks away if you’re lucky) then you can’t choose your doctor; you just see whoever is available.
Now when I did this two weeks ago I hit the jackpot with Dr Locum Eye-Candy, but alas, this week my luck ran out and I got 1950s Doctor Man. Now don’t get me wrong, he was pleasant enough in a dried-up old stick kind of a way, and true to his 1950s roots he did listen patiently and he did actually bother to examine me properly (two things you certainly can’t count on these days in the NHS!), but then the downside of being in the 1950s kicked in, and I got the 1950s lecture about RA. I thought things had come on a lot since this kind of thing: ‘Well, that’s the nature of the disease. It’s a progressive disease I’m afraid and it will flare now and then. Now, I’m not trying to depress you but really that’s just the way it is and there’s not a lot you can do about it. You’re on a high level of methotrexate and other medication already, so … ’ And so on, and so on, for about five minutes.
I’m not actually saying he’s entirely wrong, by the way – fundamentally that’s probably true, but he didn’t make one single suggestion about sensible things I could do. OK, I wasn’t expecting him to suggest Reiki or a gluten-free diet or anything else that your average 2011 British GP would consider a bit ‘far out’, but what about, for example: exercise … or rest, apply heat … or cold, consider a steroid injection in the joint, come back if it gets worse, have physio, get hubby to do all the cooking, washing up, shopping etc. for the next few weeks. <Grin – of course he wouldn’t suggest that! Not the done thing at all in the 1950 to have a man doing all that!>
I must admit I wasn’t feeling very ‘with it’ and I damn near forgot to actually ask what I’d gone in to ask, which was since I was doing a 50 minute round trip every week for ultrasound treatment on my shoulder at the moment with the physio, could he please ask the physio to treat the knee too? Finally I did remember, and, give him his due, he agreed immediately and not only that but he actually wrote me a note (with his very smart 1950’s fountain pen) to take in with me, hopefully circumventing the need to wait five weeks for the next official appointment for a knee referral, by which time the flare will probably be over.
I did also ask him whether I should be exercising it or resting it, and he said definitely resting it … but is this right, I wonder, or is this just more 1950s medicine. Not that long ago the only recommendation for RA was ‘bed rest’!
Tags: aches, arthritis, flare, flare-up, joint pain, NHS, pain, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatology, stiffness
I posted a while ago about how the physios at the hospital ‘in line with the private sector’ were limiting appointments now, and generally becoming officially less flexible and less helpful. Well I had further proof of how in line with the private sector they aren’t on my last visit.
When I previously went for physio I had been referred for my shoulder, but when the knee flared up, knowing it was all RA, she did some work on the knee too. Now, and this is no way the fault of my physio herself I should add, it’s a typical NHS ‘powers that be’ decision, even though I couldn’t bend or straighten my knee fully, had been to the GP, had got oral prednisiolone and had had it confirmed that my knee was flaring, she couldn’t do any ultrasound on my knee at all. Because it was too inflamed? Nope. Because she wasn’t sure it was the right treatment? Nope. Because I had been referred only for my shoulder!
Fortunately the knee is actually very nicely on the mend by itself, and equally fortunately the ultrasound on the shoulder (actually the acromoclavicular joint, but I can’t keep spelling that!) has helped enormously, so not THAT much to whinge about. Also I have a cunning strategy up my sleeve if the knee doesn’t mend fast enough or gets worse again. I don’t know if it’ll work but my cunning plan is to phone the GP, explain the situation and get them to give me the referral letter, so that I can walk into the physio next time and say, ‘Here’s the letter – can you do my knee now please?’
Otherwise it’ll be the usual ‘five weeks from referral’ and I’ll be going in for six sessions for my shoulder, which will be over before the referral for the knee is officially through. This is not only a problem because if the knee needs doing it needs doing a.s.a.p; it’s also an issue because it’s 50 mins to an hour driving time to and from the hospital IN WORK TIME! So glad the NHS are working towards keeping everyone in work! HAH!
Tags: aches, arthritis, doctor, flare, flare-up, GP, joint pain, joint stiffness, NHS, oral steroids, pain, prednisolone, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, steroids, stiffness, stifness
I’ve read a lot on the net about oral prednisolone and generally I’ve thought, ‘Hmm, glad I don’t need any of that then …’
Me and my big mouth …
Anyway, here’s why. I woke up Tuesday morning and my left knee, which is where I had the major, major, MAJOR problems in 2008 but which has been relatively OK since, was stiff … I mean REALLY stiff, as in couldn’t straighten, couldn’t bend. Oh well … it didn’t last long. It stayed a bit stiff until about lunchtime and then wore off. It didn’t hurt at all so I decided not to worry about it. ‘One of those things,’ I said to myself, ‘one of those little unpredictable joys of R.A. No doubt that’s the last I’ll hear from that knee for a year or two.’
WRONG! Woke up yesterday morning and the knee was really stiff again, but instead of wearing of by lunchtime it didn’t wear off all day! It still didn’t hurt so I thought, ‘Oh well, maybe it’ll be OK tomorrow.’
You guessed it – this morning it was really stiff again and it hurt (just a bit, but it did hurt). It also felt as though someone had strapped a great big lead weight around it, which says ‘swollen’ to me, although it’s not actually noticeably hot or inflamed. So I gave in and took the doctor lottery – i.e. ‘same day appointment with a member of the same day team. We can’t tell you who you’ll be seeing and it may be a doctor or a nurse.’
Well it was obviously my lucky day because I saw Dr. Locum Eye-Candy, and apart from being eye-candy he also seemed pretty switched on and sensible and (mostly) listened to what I had to say. OK, so he got slightly confused and when I’d said, ‘This started on Tuesday’ that somehow got translated in his brain to, ‘This is an ongoing problem I’ve had for months’ – but hey, we got that straightened out pretty quickly, so I’ll let him off! (Also perhaps I got a little confused. He was GORGEOUS – made it hard to concentrate on why I was there … Hmm, hubby will proofread this for me later. Perhaps I should take it out … nah … )
So here I am about to experience my first ever oral prednisolone – oh lucky me !
On the bright side, I am taking minimal quantities and assuming it works I will only be on it for three days, so I don’t anticipate any problems. In fact I anticipate a miraculous cure. Let’s hope I’m right. I don’t always hate it when my predictions come true!
Also, on the really, really, really sunny side, IT’S NOT AN INJECTION INTO THE JOINT! (Or indeed an injection into the bum, which is always mildly embarrassing, and would have been ever more so if Dr. Locum Eye-Candy had been giving it to me!)
Tags: arthritis, consultant, doctor, GP, NHS, physical therapy, physio, physiotherapy, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), thyroid
OK, here’s the thing – the geniuses at my local NHS physo department (or should that be genii?) have decreed that in order to ‘be in line with the private sector’ they will only give any patient a maximum of six appointments before they kick them out. (The last three words are, of course, my terminology and not theirs!)
I asked Lovely Physio how this was ‘in line with the private sector’, as I had had to have quite a bit of private treatment before I got into the NHS programme and oddly enough they hadn’t been anxious to see the back of me after six appointments. No surprise there – I was paying them. Why would they want to be shot of me? She said something like, ‘I have no idea, but that’s how they’re presenting it to us!’
I suspect the idea is that by ignoring the fact that there are people with chronic conditions who can benefit enormously from regular therapy and pretending that everyone they see can be ‘cured’ in six appointments, they can massage their figures by getting the waiting list down from the current five weeks to a more ‘in line with the private sector’ one to three weeks.
The complexity of the system emerges from the fact that it’s general practitioner budget that pay for this treatment, but once you were being treated, until now, it was up to each physio to decide when and if to discharge. The GPs had little or no say, but they had to pay. So the idea is that you now have your maximum of six appointments and then go back to the GP if you feel you need to still see a physio, to get re-referred, as I mentioned in the previous post. The GP can, of course, say no. I suspect if I see the one that knows me she would say yes … we’ll have to wait and see, but even if she does we’re looking at a five-week waiting list right now.
One silver lining in the cloud – they have an SOS system whereby if I need to see my physio in the next couple of months I can phone and make an appointment saying I’m on the ‘SOS list’. I can then go in under that and have maybe six appointments then before getting kicked out! Hopefully I won’t need to see her in the next two months, but last time I thought that I only lasted three weeks …
Unfortunately I feel I have very little fight in me at the moment – I don’t know if that might be something to do with the thyroid issues i might or might not have, but that’s the way it is!
Tags: arthritis, consultant, DMARD, doctor, hydroxychloroquine, joint pain, methotrexate, MTX, National Institute for Clinical Excellence, NHS, NICE, NRAS, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
I got my shiny new NRAS magazine through the post today. Great to see an article by Rheumatoid Arthritis Guy in there! Well done RA Guy! But there’s always something in there to get me aeriated, and the first magazine of 2010 was no exception!
Interesting also to see a two-page spread on the ‘European Fit for Work Report’. Frankly, I’m not sure there were that many surprises in there, although I was a bit surprised at the number of people who become ‘work disabled’. Apparently 40% leave work altogether within 5 years of diagnosis, which is not happy reading. However, it appears that the main reason for this is people being diagnosed and treated too late or incorrectly. The report recommended ‘new and more inclusive methods to evaluate the cost-effectiveness of treating musculo-skeletal diseases in particular; one that considers more than the up-front costs of medical expenditure and incorporates wider social and economic factors.’ No kidding. In other words, this report recommends doing exactly what NICE doesn’t do. The article goes on to say that ‘NICE in the UK has already begun such a deliberation, although no decision has been reached to date.’ No surprise there then!
Now, my honorable friends, please turn to page 12 of your NRAS magazine. Don’t have one? Not to worry – here’s the headline: ‘People on Enbrel stay in work longer’. It goes on to state that a 500-person study (the COMET study if anyone’s inclined to look it up) showed that those with active early RA were three times less likely to stop working if treated with MTX and Enbrel, rather than MTX alone. Absenteeism was also reduced by almost 50% for those on the combination therapy. But here’s the rub – NICE won’t allow anyone to start on a combination therapy like this until they have been proved unresponsive to at least two other DMARDS including methotrexate … so when does early stop being early? It takes, I would think from my own experience, at least six months to show that a DMARD is not working for you, because it can take them that long to start working. So you’re diagnosed (probably not immediately), you’re given a DMARD if you’re lucky, perhaps hydroxychloroquine, for six months; it doesn’t work. You try MTX (either on its own or in combination with HCQ) for another six months. That doesn’t work either. You’ve now been diagnosed for at least a year. Is this still early enough to count for this study? Perhaps it is. If so, fair enough. If not then are NICE ruining people’s chances of staying healthy yet again. I don’t know the answer – I just pose the question.
And finally to a little article by a brave lady called Jean Burke, who works with NICE to provide a patient viewpoint in their deliberations. Rather her than me but I am full of admiration. Apparently she was asked by a member of an appraisal committee ‘Surely a twenty percent increase in quality of life isn’t worth bothering about?’ Well, I suppose that’s why they need the patient viewpoint. If you’re reading this blog as someone with RA I imagine you’ll see it her way immediately; I know I did. She points out that if the extra 20% means she can make a cup of tea in the morning, go to work or walk to the shops then yes, it’s worth it!
So long as NICE remains in its ivory tower, untouched by all these deliberations about the socioeconomic effects of diseases and so on, I simply cannot see how the system can ever work effectively.
Tags: arthritis, broke, cats, fatigue, joint pain, methotrexate, Middle-sized cat, money, MTX, NASTY, National Institute for Clinical Excellence, NHS, NICE, occupational therapist, OT, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, sleep, stress
Firstly a ‘big shout out’ to Warm Socks for reading comment replies. Well done to you, m’dear! I also read them when I remember to tick the little box, but I usually don’t remember.
Secondly, for them as don’t keep up with comment replies, like me, tinglywinglypingly is a thing of the past – hurrah.
Thirdly, I had my methotrexate last night and, unlike last week, not only kept it down but slept like a log afterwards and feel great today. Middle-sized cat is also delighted, as he tends to sleep next to/on top of me, so he also got a good night. After a trip to the V-E-T yesterday he’s now costing me about SIXTY POUNDS A MONTH in medication … but of course he’s worth every penny, and more.
Hey ho – it’s only money … not as important as health.
I obviously value him more than NICE values me, or rather values other R.A. patients who are not so lucky as I am currently! This article in The Guardian tells an all too familiar story.
Tocilizumab (another biologic), which costs £9,000 per patient per year (so about the same per month as middle-sized cat costs me per year … but then consider the difference in resources between lil’ ol’ me and the British government … on second thoughts, maybe not; I’m not quite broke yet), is being given to patients in Scotland (and indeed most of the rest of Europe), but NASTY has decided once again that it’s too expensive for patients in England. And once again the fact that it could keep people in work and reduce the costs of unemployment benefit, keep them walking and reduce the cost of wheelchairs, keep them out of hospital and reduce the costs of round-the-clock healthcare … etc. etc. etc. has escaped them. It’s an argument I’ve had with them a few times before on this blog, here and here and
Tags: arthritis, consultant, costs, doctor, finances, hidden costs of R.A., NHS, nurse, occupational therapist, physio, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA)
I’m part of the Norfolk Arthritis Register (NOAR) study, which is an epidemiological study around rheumatoid arthritis. They look into all sorts of things, physical, mental and social, that affect R.A. patients, from an epidemiological standpoint – i.e. they look at lots of us and then see what the statistics say. In spite of the old ‘lies, damn lies and statistics’ quote, they produce some very interesting results.
One of the bits of research they did, before I was involved, was around the hidden costs of R.A. and it’s something I’ve been thinking about a lot lately. Even mild R.A. leads to an extraordinary amount of hidden costs, even in this country with our ‘free healthcare’. I’m trying to compile a list of those hidden costs for someone like me with mild R.A. – I’d be interested in any additions people might think of, so please comment if any come to mind! Later on, when I have the list as complete as I can make it, I’m going to try and price it. I think that might be quite frightening.
Here’s what I’ve got so far:
- Over the counter medications such as paracetamol, stomach settlers etc. not prescribed by the doc
- Time off work due to sickness
- Time of work to attend hospital appointments (consultant, nurse, physio, OT etc.)
- Travel costs to attend hospital, since I live in a rural area and hospitals are 30 miles for consultant/nurse and ten miles or so for OT/physio.
- Aids such as jar openers, tin openers etc. (Some of these are free through OT services, some aren’t.) I have compression gloves from OT for instance, but they’re starting to get a bit baggy/stretchy after less than a week, so I might invest in some good quality ones!
- An occasional one only, but cost of trips etc. cancelled due to a flare!
I’m sure there are more – will add them as I think of them or as people comment with suggestions! Some, like cost of transport because one can’t drive, I haven’t included because they haven’t actually happened to me so far!
Tags: anti-TNF, appointment, arthritis, consultant, flare, GP, hospital, medicine, methotrexate, MTX, NHS, NRAS, nurse, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
It’s official – I had a flare at the end of October/early November … and more, I suspect. No kidding. I think I knew that, but this time it actually showed in the bloods! That’s a first for me!! I’ll give the consultant his due though – he was as amazed as I was that the bloods actually matched with how I’d felt, so he does at least appreciate that one can feel totally lousy and have no indication in the blood tests whatsoever, and vice versa.
Anyway, we agreed that things were going pretty well at the moment and that it didn’t seem sensible to go on increasing the MTX willy-nilly if things were OK. I explained that I knew I was much, much better than last time I’d seen him (which I think was well over a year ago, as I’ve since seen a registrar and a nurse but not the man himself), but that they certainly weren’t perfect, and for the first time he admitted that I probably wasn’t going to achieve perfect … I’d kinda figured that out, but still a slight blow to hear him say it!
He then cheerily added that never mind, compared to what he usually saw I really wasn’t bad at all. He has no idea just how bloody irritating this comment is – he’s said it before. I think last time I was too dazed and generally fed up to actually respond, but this time I was properly prepared and I pointed out that I wasn’t comparing myself with his other patients – I was comparing myself to myself before this whole R.A. business started, and that when I do that I don’t see my current self in a terribly favourable light. The nurse who sits in with him (as a chaperon and to make sure he remembers to fill all his forms in!) was nodding sympathetically and understandingly behind his back. I got the feeling she’d heard this comment from him before and had thought exactly what I was now saying. Anyway, he sort of blinked a bit, looked rather surprised at being answered back to and mumbled something that was vaguely conciliatory … I think.
Then he bid me to enter his dream world by saying, “If the MTX doesn’t keep things under control, if you have another flare, we’ll put you on these terribly expensive new drugs called biologics or anti-TNFs.” (He does tend to forget I have a brain.)
I snorted – very rude, but it just sort of happened! I said something like, “Have to be one hell of a flare for the NHS to let me on to those!”
“Oh no,” says he, “just an ordinary sort of flare.”
Well, that’s certainly not the impression I’ve been given by the NRAS magazine, the people on the NRAS forum (other R.A. sufferers, generally in a much worse state than me, who have failed the ‘DAS test’ for anti-TNFs), the press, people I met in Barcelona, the nurse practitioner, the GP, the practice nurse … just about everyone else really. Since this is the man that told me I should see him in three months last time, when it was totally impossible for anyone to get an appointment closer than six months, and the man who told me that all I needed to do if I had a flare was phone and I’d get straight through to someone on the helpline (not true as it’s usually unmanned and then they don’t call you back) I don’t feel too filled with faith about the biologics comment either! I dare say though that his “ordinary sort of flare” would be the ordinary sort of flare that his other patients have, not my little fizzle!
Well, hopefully the MTX will now do its job properly and I won’t need to ever find out whether he’s living in a dream world or I’m just being unnecessarily pessimistic about my prospects for biologics!