Here is a message I received from Jude at Arthritis Research UK. They’re looking for people who have been diagnosed with this rare form of arthritis, so if you have it, please fill in their survey (link below):
It seems good information about a rare form of arthritis called palindromic rheumatism is hard to come by, but I’m hoping some of your readers and bloggers can help put that right. I’m doing some work for the charity Arthritis Research UK, which wants to develop information materials to help people with palindromic rheumatism manage their condition. As a first step, we want to talk to people who have been diagnosed with the condition. It’s characterised by unpredictable flares of pain and swelling in joints, which return to normal between attacks, and can have life-changing implications. As you rightly say, everyone is different, and with so little research into palindromic rheumatism, we want to hear at first hand what it’s like to live with it, how it affects people and what their experiences of getting a diagnosis were. We’d like to invite anyone among your contributors and readers who has palindromic rheumatism to take part in a survey between April and July 2013. All they have to do is complete a short online questionnaire at http://www.arthritisresearchuk.org/palindromic. If they agree, we’ll then contact some by phone to hear their palindromic rheumatism story in more depth.
Meanwhile, thanks for the very positive blog about RA.
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: aches, arthritis, consultant, doctor, fibromyalgia, flare, flare-up, hands and feet, hospital, joint pain, knee, nurse practitioner, R.A., RA, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatology, work
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.
Tags: arthritis, Arthritis Care, Disability, Disability Living Allowance, DLA, Motability, MP, NHS, nurse, Personal Independence Payment, PIP
The Disability Living Allowance in the UK is being replaced by PIP – the Personal Independence Payment; double-speak if ever I heard it! Everyone who currently claims DLA will have to be re-assessed for PIP, and Arthritis Care estimates that 42% of people who can currently get a car through the Motability scheme and higher-rate DLA will lose their cars through PIP.
At the same time I have just heard that the district nurses in a region near to us are no longer going to be doing what district nurses do, visiting people in their homes! So people are going to lose cars and then find themselves unable even to see a nurse. Apparently if people absolutely cannot, by any other means, get into the surgery, they will be provided with a courtesy car. I’ll be interested to see how that works out, and how much it costs, considering the district nurses only ever visited the people who couldn’t get into the surgery anyway!
The other thing that PIP is going to do to ‘save money’ is to change the current DLA walking test from inability to walk 50 metres ‘reliably, repeatedly, safely and in a timely fashion’, to someone who can’t walk 20 metres ‘reliably’. Reference to repeatability has notably been removed, so that anyone who can walk 20 metres on the day of their test will presumably not get PIP, even though with things like RA or MS, one might be able to walk a mile one day and no where the next.
2o metres is patently absurd; it seems to suggest that so long as someone can walk as far as the corner of their road or a neighbour’s house then they are fit enough to fend for themselves. According to the MP briefing prepared by a campaign group that Arthritis care are involved in, the 20m has not been based on any medical or scientific evidence; so it’s clearly a cynical decision to save money.
But in reality, much like the district nurses, how much money will it save? People who have their independence taken away from them will obviously be calling more on public services for help. The money will be being spent; just not from the same budget pot.
Who is this going to help?
Agree? Please write to your MP and tell them what you think and why. You can use the Arthritis Care Hardest Hit Campaign tool to help. All you have to do is put in your name and address; the tool will find your MP, produce a letter, which you can edit if you wish, and then you just press send to get it emailed over. It takes seconds – and it could make a real difference.
Photo by Leo Reynolds, (C) September 4 2010, licensed under Creative Commons
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!
Tags: arthritis, genes and RA, genetic therapy, R.A., RA, RA genes, rhematoid arthritis, rheumatoid, Rheumatoid arthritis, rheumatoid arthritis (RA), rheumatoid arthritis genes, rheumatology, X chromosome
Well, all those of us who suffer from RA and/or are women will already know that it’s not because we’re a bunch of winging Minnies, but until recently, although a genetic link was suspected, it had not been found.
Professor Alan Silman, medical director of Arthritis Research UK, said: ‘This is the first time that a genetic association has been established between rheumatoid arthritis and the X chromosome. This could provide a useful clue in helping us to understand why rheumatoid arthritis is three times more likely to occur in women.’
It was reported late last year that among the 46(!) genes that seem to be linked to people getting RA, some have recently been discovered that are on the X chromosome. Now both men and women have X chromosomes, but while women have two X chromosomes, men have one X and one Y chromosome instead, and the genes don’t occur on the Y.
This is all part of a long-term study from the University of Manchester (UK) and the genes on the X chromosome are among the 14 found towards the end of last year.
Professor Jane Worthington, study lead based at the NIHR Manchester Musculoskeletal Biomedical Research Unit, said: ‘This groundbreaking study brought together scientists from around the world and involved the use of DNA samples from more than 27,000 patients with rheumatoid arthritis and healthy controls’ She added, ‘We observed remarkable similarities with genetic markers associated with other autoimmune diseases,’ which is an interesting, but perhaps unsurprising finding.
The intention behind all this work is that it will lead to new ‘genetic therapies’ – drugs that can target certain genes and switch them on/off as appropriate. Let’s hope they won’t be too long in coming!