Tags: aches, arthritis, depression, doctor, fatigue, flare, flare-up, GP, hospital, hypothyroidism, joint pain, methotrexate, MTX, pain, R.A., RA, rhematoid arthritis, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, stress, T3, T4, thyroid, thyroxine, tiredness, TSH
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.
Tags: cats, children, day out, folic acid, gardens, methotrexate, MTX, peacock, RA, Rheumatoid arthritis
Saturday was an absolutely glorious spring day – sunshine by the ton! My Saturday started by being woken by an unexpected visitor in the garden. I thought it was a cat and couldn’t understand why our cats weren’t responding to these incredibly loud meeows. The cats, of course, knew better! Here’s a picture of our visitor.
The sight of him was a grand start to the day, but it just got better and better. Thanks to the f-f-folic acid on F-F-Friday I was f-f-feeling f-f-fine and I braved my first trip out in Hubby’s open topped MG. As bravery went, I wasn’t very! I had a long-sleeved t-shirt, two jumpers, a jacket, a ‘slanket’, a blanket, a hat and gloves!! It felt fab though, being driven along with the wind in my hair … there were times when I felt as though the wind was in my very bones, but mostly it was heavenly.
We visited East Ruston Old Vicarage Garden first of all – an extraordinary place which must surely have pioneered the idea of garden rooms. It’s very close to the coast (as you can see from the picture, where Happisburgh (pronounced hays-borough of course!)) Lighthouse is visible through a cleverly placed hole in a hedge, but due to incredibly skillful planting and deep, deep double hedges, they can grow the tenderest of plants, including stunning camellias.
It has to be one of the easiest places in the world to get lost in because there are so many paths and so many nooks, but although it feels really spacious it’s actually quite small so not even I can really get lost for long!
We made a couple of friends while we were there. The first can be seen below on Hubby’s lap. Note the gazes of mutual adoration. Not sure who’s cuter!
The second was equally cute but slightly more worrying. We’d found a nice secluded bench to sit on and soak up the sun for a few minutes, and were enjoying the peace and quiet when suddenly a very small child came barelling in from nowhere and jumped up on the bench next to hubby, pulling his legs in and crouching as small as possible. I whispered ‘Are you hiding’ and he nodded. After a few seconds, when no one had come to find him, he got bored and said ‘Did you know there’s a dinosaur head over there?’ We said we didn’t. (In fact we knew there wasn’t, because we’d already noticed the cow’s skull complete with horns in the part of the garden designed to mimic the Arizona desert, complete with a range of cacti etc.) I asked him if he was sure it was a dinosaur head and he assured me that he was – it was, he said, in fact a Tyrannosaurus Rex head. When we asked him how he knew he looked at us pityingly and said ‘Because it’s got horns!’ Then, grabbing a rather surprised Hubby’s hand, he said ‘Come and see!’ and dragged Hubby over toward the cow’s skull. ‘You’d better come with me!’ said Hubby hurriedly, as images of angry parents, police, child abuse accusations and court cases flashed through his mind! So off the three of us trouped, like a line of ducks, small child pulling Hubby along by the hand and Hubby pulling me along.
Fortunately at this point small child’s father caught up with us. More fortunately he obviously knew his son well! ‘Ah, I see little Jonny has adopted you. Sorry about that. He has a habit of doing that.’ I explained that we were off to see the Tyrannosaurus head (and added ‘cow skull’ sotto voce when he looked confused). Laughing and apologizing he came with us, and when we’d admired the most impressive dinosaur and Little Jonny was satisfied, we went our separate ways. As we wandered of Father said to Jonny, ‘Which way shall we go now then?’ and Jonny replied loudly, ‘Well I’m going with them!’ Fortunately Father persuaded him otherwise, probably with a bribe of ice cream as we saw them later in the cafe!
The rest of the visit was less eventful but still very enjoyable, and after a tea break we headed off around the coast and stopped at Cromer. (Penguins like to see the sea!) We finally rolled home just as it was getting dark, tired by very content. Hubby commented that I was looking and sounding and moving better than I had for quite a while – I felt it too. Amazing what a spring Spring can put in my step!
Feeling a tad creaky today (Monday) but it’s m-m-m-Methotrexate day so hopefully by tomorrow afternoon I’ll be full of the joys of spring again (although perhaps a little queasy as I’ve not managed to see the doc about changing the folic acid dosage and timings yet!)
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: 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!
Tags: cold, doctor, fu, GP, methotrexate, MTX, R.A., RA, Rheumatoid arthritis, sore throat
1. Don’t become a GP if you have the personality of a lettuce.
2. Remember that it’s probably going to get pretty boring by Thursday afternoon – loads and loads of six-minute appointments seeing snotty little people who should have stayed at home – but it’s part of YOUR JOB NOT TO SHOW HOW BORED YOU ARE!
3. When examining a patient it might be helpful to say things like ‘I’m just going to feel your neck for glands’. Otherwise you may one day find yourself pinned to the wall at the back of the surgery by an angry young man who thought you were trying to strangle him.
Yes, you guessed it – I just saw a GP I didn’t really take to. And, as you might also have guessed, I’ve gone down with a stonking cold, probably courtesy of hubby, although mine is NOT flu. (No, I’m not suggesting he’s had ‘man flu’ – he had a temperature of 102 for two days; but I haven’t had a temperature at all.) It went with an equally stonking sore throat. When I looked in the mirror (as you do … don’t you? Well I do), I could see little red wheals right across my throat. When the GP looked he said he couldn’t see anything. Hmm, that’ll be because my tongue was in the way I expect. However, as he’d already decided to give me antibiotics given the fact I was on MTX for the R.A., and as we had had an instant personality clash and I wanted to get out of there a.s.a.p. I didn’t push the point.
So – all the usual drugs plus paracetamol, sudafed, antibiotics (third lot in a month I think). I’m heartily sick of all these drugs … but then again, the MTX is WORKING, so who am I to complain?
Tags: fatigue, hot flushes, methotrexate, MTX, pain, RA, Rheumatoid arthritis, stiffness, tiredness
The hot flushes are back with a vengeance! As anyone who’s ever had them, or has a partner who’s ever had them, will know,that is NOT the good news.
The good news is that although I’m quite convinced from previous fluctuations between hot flushes and no hot flushes, RA pain and no RA pain, that the two are correlated – for me, hot flushes usually means more RA pain and stiffness – this time the RA symptoms remain mild to non-existent. Further indication that the MTX is doing what it’s supposed to be doing.
Even the fatigue has reduced – I’ve had a really busy week – busy at work, making some bits and bobs for a charity stall run by our local sewing group, preparing for my mum’s 70th birthday (the house is full of cake, icing stuff, presents, wrapping etc.) – I had a ‘ladies who lunch’ and shopping trip on Saturday involving 50 minute drive each way to Bury St. Edmunds, and I managed the WHOLE weekend without a day-time nap.
I very nearly succumbed, but just managed not too. I hoped that would guarantee a good night’s sleep last night, but thanks to the hot flushes/night sweats, it didn’t. Oh well … can’t have everything. At least the RA is behaving itself!
Tags: arthritis, fatigue, methotrexate, MTX, RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), sleep, tiredness
I was given temporary hope on this post from Warm Socks at Infinity-itis (Sorry, I can’t find the infinity symbol anywhere) on methotrexate side effects. Remicade Dream commented that she always had a mental fog on MTX day. Ahah, I thought, my problems of extreme dippyness (and fatigue) this week must have been caused by my increase in methotrexate.
I felt better for a minute – hurrah, all I have to do is blame the meds.
Then I realised the horrible truth – I take my m-m-m-m-methotrexate on a M-M-M-M-Monday and I was still being just as dippy yesterday … I actually forgot to go to a client meeting! (Thankfully she’s a nice person and happens to work in the next-door office, so a quick phonecall from here and I was there in a flash.)
Hubby has now identified the true root of the matter – I’m suffering from Dippy Penguin Syndrome. Unfortunately it is, as yet, incurable.
Tags: arthritis, certolizumab pegol, Cimzia, disease progression, DMARDs, European Commission, FDA, injection, joint damage, methotrexate, MTX, NHS, NICE, RA, Rheumatoid arthritis
Cimzia (certolizumab pegol), a biologic produced by UCB and administered by injection under the skin, has got the OK from the European Commission for use in rheumatoid arthritis. (It was approved by the FDA in the US in May.) It has been approved both as a combination therapy with MTX for those with moderate to severe active RA who haven’t responded to treatment with DMARDs, AND as a treatment on its own where a patient can’t use methotrexate.
Trials showed that Cimzia brought significant benefits to patients that lasted for more than two years. Clinical data also indicates that Cimzia stops disease progression – or did for the length of the trial, which was around two years.
Of course the big question for the UK (and it’s a big question for UCB as well since the UK market is quite a significant one) is will ‘NICE’ approve it for use on the NHS? I wouldn’t like to try and guess but it’ll be an interesting story to follow.
Tags: arthritis, blood test, cats, GP, methotrexate, MTX, nurse, RA, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), stress
I have had a bad day … but a good R.A. day!
Here’s how the day’s gone:
1. I had completely forgotten I had a blood test this morning, went sailing off to work, got there, realised that I should be going to the GP, turned around, and the red petrol light came on. Mad dash to fill up with petrol from my spare can before the appointment, because I KNEW that otherwise I’d forget.
Positive R.A. stuff:
- All results from the previous test were fine – in spite of a recent increase in MTX.
- The nurse only had to have one go at getting my blood instead of the usual Penguin is a pincushion routine.
- I got the top of the petrol can and it didn’t hurt!
2. For some reason the red light wouldn’t go out, so I decided to go and buy some petrol. Just as I’d driven PAST work on my way to the petrol station, the petrol needle readjusted and the light went off!! Aargh. Decided to get some petrol anyway and fill up the can. Filled up the can, put some more in the car, went in and joined the queue. There was a man in front of me but I didn’t take much notice of him, as you don’t. When I got to the front the conversation went something like this:
Penguin: Pump 2 please
Penguin: Number 2 … please.
Penguin: Pump … number … 2 … please?
Assistant: Ohmegawd, ohmegawd, ohshite, ohmegawd, stop Mr Pratt … Mr Pratt, Mr Pratt!* oh no he’s gone. Lydia, Lydia, shite, heeeeeelp.
As you may or may not have guessed, the aforementioned Mr Pratt had told her that he was on pump 2 and she hadn’t checked. It was obviously not deliberate as he had an account with them so it can be changed on that, but it caused havoc as far as me paying went, and added about ten minutes to my already delayed start at work.
Positive R.A. stuff:
- I worked the petrol pump and it didn’t hurt at all! (This is not usual at all for me.)
- Standing about patiently (and then mildly irritably, and then impatiently) while the assistant sorted herself out didn’t hurt either. My feet were fine.
3. I get to work, tell ‘the boss’ what kind of morning I’ve had and firmly announce that from now on the day is GOING TO GET BETTER! I am determined that this will be so. I am thinking positively. NOTHING ELSE is going to go wrong.
Then, at about 10:33 I realise I’m supposed to be in the cafe down the road meeting a friend for coffee …at 10:30. Aaaaaaaaaaaargh. I tell the lass that works for me (a.k.a. the boss) that if my friend phones, say I’m on my way (she’s a good lass, she could have worked this out for herself, but I’m panicking at this stage), throw my coat on and run (well, jog … well OK, walk fairly fast) down the road.
I’ve only gone a couple of hundred yards when a horrible realisation dawns. I phone the boss and ask her to check my calendar. Sure enough it’s NEXT Monday I’m meeting my friend for coffee. Another few minutes wasted out of a busy day!
Positive R.A. stuff:
- Racing down the road and my knee didn’t even twinge!
4. Had to take middle-sized cat to the v-e-t this evening. Hubby rang at about 4:30 to say there’s no way he’d be home in time. ‘That’s fine,’ says I, ‘I thought you wouldn’t be.’ I wondered why he was sounding so bothered about it. Then I got home, put MS cat in the box, picked it up and thought, ‘AH! That’s why hubby’s worried.’ I’d forgotten that MSC weights a tonne (approx.)
Positive R.A. stuff:
- OK … it hurt, I can’t deny it … but it didn’t hurt anything LIKE as much as it has done in the past!
So hurrah – what a great day – what a lot of signs that the MTX might be doing its job properly at last!
* Names have been changed to protect the idiot.