Three-monthly blood tests

November 19, 2013 at 9:56 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 7 Comments
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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.

But what if …

May 17, 2013 at 8:47 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 13 Comments
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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!

Niggles and Grumbles

February 13, 2013 at 10:02 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai | 6 Comments
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I’ve got grumbley hands and feet. I’m not sure that I’d use this description to the rheumatologist mind you, but it seems to fit. I’m not in agony; in fact,I’m not even in constant pain, but if I overdo it then the hands and feet … and knee of course, how could I forget the knee … grumble!

I’ve been getting a lot more grumbling going on over the last few weeks than I’ve had for ages. I think it all started with the flare that I had between Christmas and New Year, and there have been niggles ever since.

It doesn’t seem to matter what I’m doing – and in fact my hands have been better today, back at work and typing, than they were over the four-day weekend I’ve just had. (Fabulous birthday weekend away, but that’s a whole ‘nother story!)

At least I’m not grumbling much about work right now – we’ve had two weeks of it being dead quiet, and now it’s gone manically busy! It would be lovely it was a constant steady flow, but I’m much happier with it busy and buzzing than dead as a dodo.

Well, I don’t have a rheumatology appointment until May, and things are nowhere near bad enough to make me subject myself to one earlier, so I suppose by then the grumbles will either have done what they usually do miraculously in time for a rheumy appointment, disappeared – or they’ll be bad enough that I’ll be able to have a proper grumble to the doc about them! In the meantime I shall just grin and bear it … or possibly grumble and bear it.

How not to run a physiotherapy session!

July 11, 2012 at 9:27 pm | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, rheumatoid arthritis (RA) | 2 Comments
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Physio: Good morning! So, we’ve been doing acupuncture on your shoulder, yes?

Penguin: <Feathers on end, eyebrows raised> NO!

Physio: Oh … you seem very definite about that.

Penguin: Yes … I am.

Physio: Erm … what have we been doing then?

Penguin: Some exercises and some frictioning [a kind of massage on the tendon]

Physio: Oh yes, and how was that going?

Penguin: Well the frictioning last week really seemed to help.

Physio: Great. Let’s do some more of that then. Now, the exercises, it was this one, with your arm bent, raising up and out, yes?

Penguin: No …

And so went most of the session. Having said all that, she did do the frictioning and it did help, and once we’d established what exercises I was doing, all went relatively smoothly.

THEN she turned on her computer (with my notes on it of course).

What had happened was that I had the first appointment of the day and she’d obviously been running late and thought, ‘Never mind, I’ll wing it.’ So, a word of advice to health practitioners everywhere – don’t! I’m sure it took her longer to find out what she was supposed to be doing than it would have taken to turn on the computer before we started!

NHS wonderland part 2 – peeing in a pot for 24 hours

July 9, 2012 at 9:36 pm | Posted in Me, rheumatoid arthritis (RA) | 3 Comments
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Well, I went for my x-rays – appointment booked half an hour before the dermatology appointment, and it all fitted in fine – I had about fifteen minutes to find the dermatology department once the x-rays were over, and I found it without any problem. All going rather well so far.

Then I waited … and waited … and waited … and waited – but that’s just the way it is. Fortunately I’d remembered to take a good book!

Dermatology lady said she’s fairly sure I haven’t got lupus (hurrah) but I have got rosacea (boo). Unfortunately I’ve been applying gunk to my face for nearly five months now and it’s not going away at all, so the obvious solution seems to be ‘try it a bit longer, and in the meantime we’ll discharge you’. Hmm … thanks a bunch!

Having said that, she was very pleasant, really took her time, asked sensible questions and listened to the answers. For that, I don’t mind waiting a bit!

One of the things she asked was, ‘Do you get night sweats?’ to which the only possible response was, ‘Do I get night sweats! You bet!’ So we talked about the whole ‘early menopause’ thing and the fact that although it started 5 years ago I didn’t seem to actually have gone through menopause and the hormones had never actually been fully investigated.

And that led to the delights involved in the title to this post. ‘I think we should test your hormone levels,’ she said, ‘ but I’m afraid the test is a bit long-winded. It involves a 24-hour urine sample.’ I couldn’t resist the obvious response. ‘I can’t pee for that long!’ Poor lady must have heard that one a few times before but she was very patient with me!

I have to keep all urine I produce over a 24-hour period and put it in a LARGE sample bottle, which I had to collect from the labs in a beautiful LARGE bag with things like, ‘Biohazard’ and ‘warning – dangerous substance’ stamped all over it, as it contains hydrochloric acid to preserve the sample, once the sample is in there. Luckily I had brought a bag for my book and other bits so I just put it inside that – otherwise slightly embarrassing to walk around with.

I haven’t done this test yet as she wisely suggested waiting for a day where I could stay in the house for 24 hours, and there aren’t many of those, but I’m planning to do it soon. Once done, and I’ll finish my 24 hours at 8 0’clock one morning, I have to jump in the car, dash over to the hospital, deliver the sample ‘for immediate testing’ and then dash up to the top of the hospital for a blood test – which should take place straight after the sample is finished – a bit tricky since I live 30 mins or so from the hospital! Never mind – hopefully it’s not THAT critical.

If anything comes out positive/negative/worrying about this test, that’ll mean further referrals etc. as it’s hardly a dermatology issue. It’ll be interesting to find out either way though, as the hot flushes and night sweats are horrendous at the moment and if there is something hormonal going on as shouldn’t be, it would be nice to know!

 

 

In the meantime I shall continue to be a ‘ruddy cheeked penguin’ – a rare breed indeed.

Polly’s Adventures in NHS Wonderland

July 3, 2012 at 8:27 am | Posted in arthrits, rheumatoid arthritis, fibromyalgia, joint pai, Me, rheumatoid arthritis (RA) | 3 Comments
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Something’s going on. Call me a nasty, suspicious, cynical penguin, but this just isn’t normal. I went for my routine rheumatology check – you know, the one where they say, ‘Oh go away – we’re not interested in you.  Call those symptoms? Ha! I see people in a much worse state than you every day!’ (As though that has anything to do with the price of fish.) But this time it was different …  It started off with the usual intro as though we’d never met before, but this time, as I looked at her blankly, she actually said, ‘Oh – we’ve met before, haven’t we?’ Then she looked at the notes – yes, the ones she’d taken in with her five minutes before she called me in, but obviously hadn’t read, and went, ‘Oh yes, I saw you last time.’

OK, not an auspicious start, but nevertheless, better than expected. But here’s where it gets weird. She asked how I was. I said fine. She said ‘scale of 1 to 10’ and I said ‘1’. She looked blank. ‘Well, is there anything you want to ask me?’

‘No, not really.’

‘Well … is there anything I can do for you?’

‘You can say, “You’re fine. Go away and come back next year,” and then I’ll do that.’

‘Yes, but … I mean surely … ‘

What’s going on here – you usually can’t wait to see the back of me.

‘I know – you haven’t had any x-rays for ages. We ought to check there’s nothing going on below the surface that we’re unaware of.’

Really – I was diagnosed in 2007. In 2009 I mentioned x-rays and how the guidance said they should be done a year afterwards and then every so many years – but it was poo-pooed. ‘No, you’re fine. We see worse people …’ etc.

I haven’t had any x-rays done since and it hasn’t worried anyone.

‘Good heavens, do you know, you haven’t had any x-rays done since you were diagnosed!’

‘Yes, I know.’

‘Well I really think you should have them done. I know it’s inconvenient coming in specially and I know they’re a bit of a pain, but I really think …’

‘Fine. I’m happy to come in.’

‘Oh!’

And then, to make matters even more Alice-down- a-rabbit-hole, she said they could arrange the x-rays to fit in with another appointment I had, to save on trips in. Hang on – when has the hospital ever put itself out to help its out-patients? This is new – but I’m not complaining.

Stupidly, Alice never encountered a penguin, so here she is with a flamingo

Stupidly, Alice never encountered a penguin, so here she is with a flamingo

Of course, in the next couple of days the universe got itself back on track. The appointment for x-rays arrived, on a completely different day to my other appointment and at an impossible time two days from when the letter arrived.

Ah – that’s more like the NHS I know and love, I thought. But wait … I emailed them (yes, they’re now so far into the modern age you can email them, woohoo) and said, ‘Sorry, can’t make that, but I will be in the hospital on this date for this appointment. Can you fit round it?’ And wha’-do-ya-know – they actually did!

So … did it work? Did they fit in? Did I run late for the next appointment? For answers to all these questions and more, you’ll have to wait for the next exciting episode of … Polly’s Adventures in NHS Wonderland.

The joys of a winter routine hospital appointment

December 23, 2011 at 9:03 pm | Posted in Me, rheumatoid arthritis (RA) | 1 Comment
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I really hate the winter half of my six-monthly hospital appointments. I suppose it could be worse. I have the nurse practitioner visit (usually bad) in summer (not so bad), and the consultant or registrar visit (usually OK) in winter (not so good), so you could say it balances out. I have just had my visit to the register – a very nice young lady who, while obviously struggling with the basics of the English language, still clearly had an excellent grasp of autoimmune diseases! It took rather a long time to find any of that out though.

At the risk of sounding like one of those very bad school essays (‘What I did on my holidays: I got up at 4am. Mummy was cross and said go back to bed. I got up again at 6am. We left the house at 7am. We arrived in Wales at 11:30 am’ etc.) here’s why I hate the winter appointment. I left work at 10:15 for what should have been an approximately half-hour drive to the hospital for an appointment a bit after 11. Why leave such a long time? Because it’s December. The weather was a bit rubbish and if you have an appointment you can guarantee to get stuck behind something slow. I did. Then there’s the car parking – always fun. I struck gold in the third car-park I tried. As you can imagine, after driving round three car parks, all for several minutes, I was starting to cut it fine, but as soon as I reached the Rheumatology Department I realised I need not have worried. The waiting room was heaving! I handed in my appointment letter, took my seat and waited … and waited … and waited. The usual charmless nurselet called me in, did the ‘weigh and wee’ and then I got sent to the equally busy inner weighting room … where I waited … and waited … and waited.

After about an hour a nurse came out and wrote next to my consultant’s name on the notice board ‘running one hour late’. Twenty-five minutes or so after that, I finally got seen. Fortunately I’d taken in a good book. Unfortunately, as it wasn’t so cold as last year, and they were probably even more short-staffed, no one offered us a drink. I hadn’t had time for a drink on arrival because it was time to check in, so I was a bit parched.

Useful appointment with nice registrar followed, which culminated in a further referral (who knows where, who knows when … but no hurry, nothing urgent!) and a blood test. ‘Will you give me a form so that I can get the test at my GP?’ I asked. ‘No, no,’ she said, no doubt intending to be most helpful, ‘you have it here. Just go to the blood test department …’

So, by now thirsty and pretty peckish too, but thinking I’d better get this done before heading for a café, I went and found the blood test department. Guess what? The waiting room was heaving AGAIN. That’s another reason for hating the December appointment. People get ill in the winter!

I went up to reception and got a ticket – 73. The number just called was 63. Only ten, I thought. Surely it won’t be that long. ‘What’s the waiting time likely to be, just roughly?’ I asked the receptionist. ‘Hmm,’ she said. ‘Could be up to 45 minutes … but it might be much quicker.’ Aaaaaaaaaaaargh. 45 minutes? Aaaaaaaaaaargh! And we were so busy at work too. So I phoned the duty junior penguin at work and went ‘Aaaaaaaaaaaaaaaargh’ down the phone at her. (It’s in the job description – ‘be prepared to listen to senior penguin going aaaaaaaaaaaaaaaaargh periodically’.)

As it turned out though, the queue did go down quickly. All of a sudden they were charging through people and I was the only one left, and then my number came up, and in I went to be processed. (It did feel a bit like that this time, but given the numbers they were having to get through, I can’t really blame them!)

And so back home, stuck behind another slow lorry most of the way and then, somewhat peculiarly, a slow ambulance!  I eventually got back into work at around 2.15.

Four hours out of work: total time with medical staff, approximately 15 minutes. Frustration factor: high.

Merry Christmas, Felis Navidad, Feliz Natal and Happy Chanukah to all.

Throwing thyroid into the mix

June 15, 2010 at 9:10 pm | Posted in Me, rheumatoid arthritis (RA) | 5 Comments
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I went for monthly MTX blood tests today and remembered to ask if the thyroid results were normal – I’d assumed they were, since no one at the surgery had bothered to contact me. They weren’t.

Having said that, they weren’t all that abnormal either, so what are we doing about it? In their case nothing as yet, in my case getting rather confused …and cold …and tired … and achy … but mostly just confused. Until I went in and asked for the results I thought a thyroid test was just that, one test, one answer – OK, not OK, whatever. But no … it turns out there’s a test for thyroid stimulating hormone (TSH) which is produced by the pituitary gland and stimulates thyroxine production from the thyroid gland. Then there’s tests for the two types of hormone the thyroid gland itself produces, thyroxine (T4) and the other one whose name I can’t remember (T3). Counter-intuitively, if you have lots of TSH sloshing about it means your thyroid might be UNDER-active, because you have to produce a lot of TSH to get the thyroid to do anything at all. If you have loads of T3 and/or T4 (produced by the thyroid gland itself) then you obviously have an overactive thyroid as the thyroid is producing loads of the stuff. If you have very little then clearly you have an under-active thyroid.

Symptoms of the latter include feeling cold when it isn’t (box ticked), weight gain or difficulty in losing weight (box ticked), muscle aches (box ticked), abnormal menstrual cycles (oh yeaaaah!), decreased libido (what’s libido again, somebody?), irritability (well … erm … guilty) and memory loss (not sure, can’t remember). However, my levels of T-whatever – not sure if they tested for T3, T4 or both, are in the normal range. My level of TSH though is just outside the normal range – just a smidge too high. As a consequence the docs have decided to wait and see. I can totally understand the logic of this – apparently it does fluctuate and it’s not as if it’s wildly off the scale, so try again in another month and see if it’s still high, and if the levels of T-whatsit have decreased or not.

Really – I can totally understand that – but it’s just sooooo frustrating, as I sit here grumpily shivering, with period pains! (Oh yeah, and a flare just to increase the fun.)

One interesting thing – apparently the most common cause of hypothyroidism (under-active thyroid) is an autoimmune problem. Surprise, surprise!

As to the confusion – I’ve just about got it straight in my head that there are all these tests and roughly what they’re for, but nowhere can I find clear guidance as to what is and isn’t normal range for any of these tests – it seems that for TSH it used to be considered that up to 5.5 was OK, now they reckon about 4.5, or maybe 3.5, or sometimes 2 depending on who you ask, and apparently some authorities in the UK reckon up to 10 is fine! I’m just going to go off and find a nice sandpit to bury my head in for the next month.

I wish I could live in the dream world my consultant inhabits

December 27, 2009 at 11:03 pm | Posted in rheumatoid arthritis (RA) | 1 Comment
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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!

Physiotherapy – what’s it all about?

November 9, 2009 at 3:03 pm | Posted in rheumatoid arthritis (RA) | 2 Comments
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Wren posted a comment asking about physio and I thought it might get a bit long-winded for a comment answer, so I’m making a post out of it!

This was Wren’s comment – sorry Wren, just realised that this answer is going to come a bit too late for your appointment! “On another subject: How often do you see your physio (physical therapist)? What do you do at the appointments? Are there special exercises? I’m curious because I keep reading of others having PTs they go to frequently, but this is something that I’ve never done, or even had suggested by my doc. I’m seeing him on Saturday morning, and I plan to ask about it, but in the meantime, how does this work for you?”

I personally see my physio every two weeks at the moment, but that’s a timing that we decided between us and it’s changed over the months I’ve been seeing her. I started seeing her weekly when things were really bad and we’ve moved on to two weekly. We tried three-weekly but that didn’t work out – by the time I saw her after three weeks my shoulders were in agony!

There are indeed special exercises, but again they’re entirely individual to each patient. I think it’s fair to say that generally you don’t do any exercises during a flare, reduced exercises during a “fizzle” (if you have fizzles, as I do!) and you try really hard to do them when things are fine, but frequently forget! Luckily I have a very understanding physio (this is afterall the woman who recommended a year’s supply of cake, but she says I’m not allowed to post that story!!) and she appreciates that it’s hard to remember to do the exercises when things are good!

What we do at the appointments is 1) Talk through how I’ve been over the last couple of weeks since I’ve seen her 2) Decide what needs doing this time 3) Do it. Usually, what needs doing is either ultrasound on my knee(s) or ultrasound on my neck and shoulder(s) or both. Again, I’m lucky to have such a flexible and understanding physio. By the time I got to see her, I’d been seeing another physio privately for months. Long story – see here and we’d established that ultrasound works for me. Again, it’s a very personal thing. Some people find acupuncture fantastic, especially, apparently, for knees – I don’t. Some people find ultrasound completely useless – I don’t.

If there’s a different joint giving me problems we’ll talk through that and discuss if there are any exercises that might help, or whether ultrasound, TENS etc. might help.

I have a whole selection of exercises that I should do regularly for my neck, shoulders and knee, and a bunch of others to ease morning stiffness in other parts of me. The knee, neck and shoulder exercises are more to strengthen the muscles in those parts, so that they can do a better job of supporting the joints, rather than to actually do anything to the joints themselves.

The attitude of the nurse practitioners is ‘use it or lose it’, so the consensus seems to be that the more you exercise (within limits), the better. Not being the world’s most active person the only time I’m likely to overdo those limits is when I’m having a flare (where minimal exercise is fine) or if I’m doing crochet, embroidery etc. and don’t want to stop although my hands hurt!

I hope this helps explain the whole physiotherapy/physical therapy thing a bit, but it is, I stress again, only my own very personal viewpoint, and I know that every physio is different (because I’ve seen at least five over the years) and every patient is different. I reckon if you find a physio that suits you it can only help, so why not give it a try?

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