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!
Tags: arthritis, fractures, osteoarthritis, osteoporosis, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology
You know, when I was first diagnosed with rheumatoid arthritis six years ago, when I was 39, comments like that used to really annoy me. I lost count of the number of people who said things like ‘Oh, aren’t you a bit young for that? My granny has that. She’s lost some weight lately though and feels so much better.’
‘Why do people have to make dumb comments like that?’ I’d wonder. So I’d try educating them – I’d patiently explain that what I had was rheumatoid arthritis, an autoimmune disease where my body has decided it’s a neat idea to attack its own joints, whereas what their granny had was probably osteoarthritis.
My favourite response to that was ‘Oh no – she had a big bowl of cereal every day and had really strong bones.’ So I then had to explain that osteoarthritis was ‘wear and tear’ arthritis, and what they were thinking of with the milk was osteoporosis, which is a reduction in bone density that can lead to fractures amongst other things, and which can (maybe … sometimes) be avoided by a good calcium intake.
Usually, with a few deep breaths and counts to ten, I would manage an explanation that convinced them that granny and I didn’t have the same thing – but it did used to drive me nuts.
Now, seven years on, I’m 45, overweight, look 50 on a bad day, and nobody says ‘Aren’t you too young for that?’ any more.
I kind of miss it.
Tags: autoimmune, autoimmune arthritis, autoimmune diseases, booths, free register, health, IAAM, medicine, Register Free, virtual convention, WAAD, World Autoimmune Arthritis Day
World Autoimmune Arthritis Day – yes, it really is global, because it’s also virtual. All you need is an internet connection, and it’s FREE.
REGISTER for FREE to attend World Autoimmune Arthritis Day’s 2013 Virtual Convention, here: http://worldautoimmunearthritisday.org/expo/
World Autoimmune Arthritis Day is an annual 47-hour event where nonprofits, advocates, and experts from around the world unite in order to provide educational and awareness information to patients, their supporters, and the general public.
If you ‘attended’ in 2012, which was a great event, this one should be even bigger and better, with Nonprofit Booths, Vendors, a Raffle and a special feature: A Day in the Life with Autoimmune Arthritis (an Apple/Android app and Exhibit Booth).
It starts at 11am British Summer time or 6am ET/USA on May 19th and ends at 10am British Summer Time or 5 am ET/USA May 21st, 2013. It is an interactive, LIVE, Virtual Convention that you can attend for FREE…just find an internet connection and join the rest of the world for 47 hours of education and fun!
Thank you to Eileen from Italy for commenting on my last (winging) post, and suggesting that I might be vitamin D deficient, as this could well be a major factor in season affective disorder (SAD). I don’t actually think I suffer from SAD – I was just having a low mood day, and these are rare; however, I started to look into vitamin D and came up with some interesting stuff I thought I’d share.
What is vitamin D for?
Vitamin D is used by the body to absorb phosphorous and calcium from food, and we use calcium and phosphorous to make healthy bone. In children a lack of vitamin D can lead to rickets and in adults it can cause osteomalacia, a softening of the bones leading to pain and tenderness in bone and muscles. It has also been suggested, as Eileen mentioned, that it could be a contributing factor to SAD.
Where does vitamin D come from?
We create vitamin D using direct sunlight on our skin – hmm, there’s been a bit of a lack of that round here lately!
Vitamin D doesn’t just come from sunshine though. You can also find it in oily fish (which includes mackerel, salmon, trout, sardines, herring and anchovies and tuna but not tinned tuna apparently, as the canning process alters its content of oil.) Hmm … I really like salmon and sardines but hardly ever eat them. I eat a fair bit of tinned tuna, but that doesn’t help!
So where else could I get it from? Eggs – nope, very rarely eat eggs. (Perhaps that’s something to do with being a Penguin?) Spreads that have been fortified – erm, nope, hardly ever use spread on anything. Some fortified breakfast cerials – YES! So I checked out my cerials – a 30g portion gives you 25% of the recommended daily allowance (RDA). Hmm, well I’m trying to lose weight, so I try to have a bit less than 30g so I’m not even getting that 25%.
Anyway, according to this NHS article it’s hard to get it from food alone, and there definitely has been a lack of sun over the last year!
Who’s at risk
Apparently, according to the NHS and Department of Health a number of people are at risk of vitamin D deficiency in the UK and according to this report in The Telegraph vitamin D deficiency is becoming a very significant problem in children.
Adults at risk, and who should probably take supplements, are: “pregnant and breastfeeding women, especially teenagers and young women; people aged 65 years and over;
- people who have low or no exposure to the sun, for example those who cover their skin for cultural reasons, who are housebound or confined indoors for long periods;
- people who have darker skin, for example people of African, African-Caribbean and South Asian origin, because their bodies are not able to make as much vitamin D.” Well I don’t fall into any of those categories in theory, but I’ve been virtually house or office-bound for the last few months due to various flares combined with appalling weather! Also there are a number of studies, including this one suggesting that obesity leads to vitamin D deficiency. Well, I’m not obese but I’m certainly overweight and the study I’ve just linked to shows that deficiency increases in proportion to BMI increase. So … it’s not looking to good for me right now!
What to do?
It is possible to get a blood test to see what the vitamin D levels are doing, but frankly I really doubt that my cash-strapped GPs would be interested in doing one! I could pay for one – or I could just think ‘Hey, this makes sense’ and take a supplement. I’ve opted for the latter.
A word of warning about supplements
Hubby and I popped down to the chemist yesterday and had a look at the vast range of supplements available. I was really shocked to discover that even the lowest doses of vitamin D supplement were way, way higher than the RDA. This is probably because, as sensibly suggested by hubby, they’re meant as a boost for people who have really low vitamin D, but since I don’t know where I am level-wise I thought taking the lowest does of vitamin D only supplement, which was 250% of the RDA, still seemed dodgy. So I’ve settled for multivitamins. Even they contain 10o% of RDA of various things including D, but I thought OK, if I’m getting a bit more than 100% it probably doesn’t matter – but 250, 500, 1000% – just seemed a bit crazy.
The danger of a vitamin D ‘overdose’
Vitamin D is not an example of ‘you can’t have too much of a good thing!’ If you have much too much then you can absorb too much calcium, and that can lead to it being deposited in places you really don’t want it – like the kidneys. Excess of vitamin D can also cause calcium to be removed from the bones (don’t ask me why!), which again is not something one wants!
Feeling tons better today – I doubt that relates to two-days-worth of multivitamins (because I don’t think they’ll have kicked in yet), but I suspect it could have a lot to do with two days of sunshine, some warmth in the air, a couple of walks (the first proper walks of the year) and some gardening!
Oh dear, I’m not just exhausted, I’m feeling fed up, grumpy, resentful and … erm, just maybe, just possibly, perhaps, an incy-wincy bit hormonal! As to the RA – it’s not bad at all – I haven’t needed paracetamol (Tylenol) for a few days now and my pred taper is finished, so all that’s good. Nothing to be grumpy about, right?
Right! Trouble is, I still am grumpy! I think it stems from two things – one is the weather. (Very British of me to be complaining about the weather, but really, it’s April and it’s snowing. I’ve had ENOUGH snow!) The other is the Easter weekend – or lack of it! I spent most of my Easter weekend installing a new computer at work, connecting it to the internet, networking it to the other PCs, re-installing all the programs I needed on it etc. – and I really could have used a proper break! It didn’t help that I had done all this about three days before when I had the disk wiped on my old PC in the hopes that would give it a bit more life; it didn’t, obviously!
We’re going on holiday in the not too distant future so I’ll get a break – and the weather is supposed to improve at the weekend, but (very unusually for me) I just can’t seem to shake myself out of this low mood.
It doesn’t help that I’m screamingly, ravingly, insanely bored at work today. I don’t think it’s the work – it’s as interesting as ever (and it IS interesting!) but I can’t concentrate and I just want to be somewhere else.
OK, that’s enough whinging – I’m going to give myself a good shake and get back to work now!
OK, that might be a slight exaggeration, but considering how much pain and discomfort and just plain disability I was suffering from a few days ago, I’m amazed how much better I am! Things were getting ‘worser and worser’, right up until the day after I’d had my first 20mg of prednisolone, and since then they’ve been getting better and better.
Other factors certainly aided in the recovery, including the house being scented with heavenly ‘get well flowers’ from Bro & SIL,a cheerful and cheering visit from my Mum and poor handy hubby on hand to wait on me flipper and foot… but I’m sure the pred has had a major part to play.
The day after my first lot of pred, I was able to bend the knee a bit more but still not really walk on it. The day after that I had MUCH less pain and could hobble about for a short while with my stick. Then I was back to work for half-days, and now, a week-and-a-bit later, I’m back to full-time work, not using the stick at all and feel pretty fine … just so long as I don’t try to walk up stairs normally and don’t try to stay up ‘past my bedtime’ which was about 7:30 pm yesterday!
I’m getting some twinges of backache from the right-hand side, which I suspect is all the heavy leaning on that side while hobbling about before the knee got better, but hopefully that will pass soon!
No side effects that I’m aware of from the steroids, so all’s well at the moment. Hurrah!
Massive readership spike today as I was featured in Arthritis Care‘s newsletter. A slightly belated THANK YOU to Arthritis Care for that. I’s quite perked me up! Will try to post later on the latest knee developments, which are all good!
This is going to be a very quick post – I’m having a flare in my left knee again. Old news, you may be thinking – but this is the WORST flare of my entire experience of RA. OK, my experience of RA has thankfully been pretty limited and has included, over the five-and-a-bit years since diagnosis, three or four impressive flares in my knee and very little else, but this time it’s different. Why?
- I’ve actually taken time off work… so apologies to people I owe emails to who read this blog and write to me on my work email!
- Previously I’ve had some serious pain, but it’s been short lived. This time the pain laaaaaaaaaaaaasts.
- I’ve got a prednisolone (sp?) taper
- I’ve not actually been ‘good’ since Christmas, when I had the last knee flare, since when I’ve had lots of pain in hands and feet … which bizarrely has mostly gone (unless I overdo the crochet) since the knee pain started. Any ideas as to why, anyone?
- I’ve got about four posts I want to write and can’t because I can’t sit in front of the computer long enough! They are:
- Hubby Knows Best
- Visit to the GP
- Learning from our Parents
- The Art of Patience in Patients
I wonder if I’ll ever get around to writing any of them … or indeed remember what on earth I was on about with the titles, when I’m able to sit up for longer?
Tata for now!
Tags: anti-TNF, arthritis, health, IRHOM2, medicine, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, science, TNF, TNF alpha, tumour necrosis factor
A protein called IRHOM2 has been identified as a possible new target for drugs aimed at treating RA, and could be useful for those who do not respond to anti-TNFs or even eventually replace anti-TNFs altogether. The full article on IRHOM2 can be found here, but here’s a short summary.
TNF or tumour necrosis factor has a useful purpose in the body; it is a signalling protein and it signals the body to produce a protective inflammatory response. Thus if a part of you is infected, TNF starts the process of inflammation, which takes immune response cells to the appropriate area in the blood, and they start to attack the disease-causers. In this case inflammation is a good thing.
However, when too much TNF is produced, immune cells start to act on things they shouldn’t, like our joints – leading to RA.
Anti-TNFs attack TNFs directly, and do a mighty fine job for many people, but they are toxic and can have nasty side effects.
IRHOM2 is a protein that helps to release TNF from where it sits harmlessly and inactively on the surface of cells, so attacking IRHOM2 should have the same effect as attacking TNF – reducing in TNF release and therefore reduction in inappropriately active immune cells, and so reduction in RA symptoms.
It is hoped that drugs targeting IRHOM2 would be less toxic, because they will only block TNF release from the specific cells that contribute to joint damage, and they could be an alternative for those who don’t respond well to anti-TNFs.
There is, of course, a long way to go. This is just the identification of a possible target. The next step is to find something that will actually block IRHOM2 and be safe to use in patients. Then there will be the long, slow plod (quite necessary for safety reasons!) through clinical trials, with no doubt a few failures along the way – but some years down the line this could be a real breakthrough. Let’s hope so!
p.s. I do hope this makes sense! I’m really, really tired and I haven’t had hubby proofread it yet!