have just seen the Food Hospital programme which included dietary advice to a young woman with RA. I'm fairly certain that even if I did not have RA (or something similar, still do not know) then the following thoughts would have gone through my head: 'That's appalling!' 'I've heard of Rheumatoid Arthritis but didn't know it did that!' 'Why isn't there more noise made about it?' etc.
I've no desire to over-identify with my disease and proclaim about it from the rooftops just for the hell of it but I'm sure there is a greater degree of ignorance about RA's dreadful consequences than there is about many other chronic & relatively common diseases.
Why the silence? Maybe because, as was mentioned in the programme, it is because RA is most common in the 40 - 70 age group. Not the noisiest of age groups & quite a few of us (not all, of course) are out of the workforce one way or another so the apparently all-important economic impact is at least lessened. But the suffering and cost to the health service are huge. (I believe the NHS makes a rod for its own back every time it delays or dithers and allows health problems to become more entrenched or complex.)
I'd suggest that referral times could do with a bit of campaigning pressure as could access to anti-TNFs. Or is this happening already? If I eventually get a positive RA diagnosis then campaign I will, whether that means joining an existing campaign or starting a new one.
Christina x
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Yeah count me in too on the campaigning. I didn't watch it because I was too busy watching grand designs with my son and before that Boris Johnston on who do you think you are was the tv watching of choice - not mine I might add. If I'd suggested watching food hospital to them there probably would have been mutiny! But I will watch it on iplayer tomorrow. TTx
I watched it and found it very interesting regarding the young lady's esr level,it went to normal after 10 weeks on a low GI diet,which is fantastic .i would be very interested in giving it a go,can anyone help with the foods I am supposed to be eating,I also am going to but omega 3 supplements tomorrow.i will do anything lol. Take care Michelle xx
I think its really appalling how few folk get offered anti-tnf therapies in the UK, and are made to struggle with DMARDS that either don't do enough, or make them really ill. Its not the case in the US, or even in some other countries with national health services. I do understand the need for meeting criteria for them (because of the expense), but from what I have heard, there are loads of folk who meet criteria, but have never been offered them.
So yes, I'd be right in there campaigning for better access to anti-tnfs, and also better access to appropriate rheumatologists (they aren't always specialists in inflammatory arthritis), and to specialist rheumatology nurses and physios.
This post does remind me that I really need to go back on my low starch diet though (not much benefit for RA, but can really help some folk with spondyloarthritis, which is what I am more likely to have).
Are anti-tnfs extremely expensive to produce or are the drug companies simply putting a premium on them because they can? I'm ignorant about this but have the feeling that it's a bit of both. Probably the shameless profiteering of the drug companies should be exposed relentlessly but that would take a lot of guts.
I'm just about to start researching spondyloarthritis myself. Suddenly I'm hearing about it everywhere & as I understand it, it is related to PsA??
Was just about to watch it when phone rang, so missed it and can't get iplayer etc here. Ah well, presume it was an anti-inflammatory diet with lots colourful veg and little fatty or processed food? Kind of what I eat anyway, so maybe reason why my ESR refuses to budge above normal no matter how I feel?
I think there are lots of foul diseases that you only know about if you get them. And it's the big charities like Britsh Heart Foundation and the Cancer charities that get the coverage, and little 'uns like NRAS don't get much of a national profile even tho' it does do good campaigning on some of these things. But it would be great if everyone grouped together to really push for a return to a properly funded NHS with enough doctors/nurses and no rationing of drugs, as surely that would help all sorts of people as well as us? Pollyx
That's the trouble with campaigns. I used to be involved in a lot of things when I was very young but kept coming up against the bigger picture. To reverse the running down of the NHS would take a major political shift, I believe. But I also believe that negative changes will accelerate unless they are resisted and that there is some leeway for actually achieving improvement, although only partial improvement.
Hello. I watched it last night and it was interesting and showed what the RA is and how it affects us. The dietician's same old 'weight' path..we all know about losing weight can help our bodies. Few of my friends now think that I will have some miracle recovery if I eat fish and veg :/ which I might add I do already and take supplements. I agree with you all about more campaigning needs done and to differentiate between osteo, osteo and Rheumatoid arthritis. Sorry if I am moaning xxx
What about all the other inflammatory arthritis, don't be insular in your campaigning. We are all in the same boat just different names for our diesease's , using the same harsh drugs, same anti-tnfs.
I haven't watched it yet but I think when people talk of RA as opposed to OA they mean to include all the inflammatory arthritis's, including PsA and AS under the RA banner Georje - my rheumy said Rheumatoid Arthritis is just a name for inflammatory arthritis coined by a group of rheumies (over a nice drink maybe?!) and in reality includes several different diseases under it's title. Tilda
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Trouble is the 'health doctors' to work place don't think this. Sorry but am in a angry mood today, I have just heard that an ex colleague of mine got her IHR through having RA, on same treatment as me, yet they refused me as I was about to start this treatment, in his words ' I was unfit to complete my job but did not fit the criteria as I was not disabled'. I hobbled in with a pair of crutches, fingers non existence. I left under VS with a lower pension than I should have with IHR. So yes the magic words/letters are RA for benefits etc from what I can see. Yet I am singing from the same song sheet as you all are with regards, inflammation, pain, fatigue, drugs that can do me harm as well as help. Best go or I shall start to cry again with pity, and I need anger to get through this. Sorry for sounding harsh and mean spirited.
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I reckon we can all relate to anger rather than mistaking it for being mean-spirited. I don't know what these things are but I get the gist. And it is a worrying one. (I'm getting there - IHR = ill-health redundancy (?)) Coming up against such injustice, especially where your money is concerned must be so frustrating. I'm guessing it's too late to appeal? Basically, sounds as if the more well-known diseases make it harder for employers to wriggle out of their responsibilities?
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Yes, IHR = Ill Health Retirement. You can only appeal with another illness but not with the same one! I was stuck in no man's land, not able to work, work's doctor not letting me go back and run out of sick allowances, the only recourse I had was Voluntary Severance. My rhumy team were astounded and said it was immoral, but had heard this before with Local and County Councils.
Not at all Georje you sound just as I would if I were in your situation. PsA is just as bad as RA and sometimes worse so I've observed many times when I used to go on the Arthritis Care forum. Anti-TNFs are even more urgently needed for this condition I was told so keep your anger and fight your corner we are all behind you of course.
We don't need all this stupid stuff about is it RA or PsA or AS here - it's all horribly painful, all autoimmune and all requiring the same horrible drugs to treat it so why all the subheadings in this context? These people in the world of employment are often so dumb it's not true - I hope you get your rightful settlement -it sucks that you are having to fight so hard but remember it's not RA sufferers fault - many aren't eligible for benefits either because of the variable nature of the disease so don't go and vent your anger on the wrong people such as your ex-colleague! Tilda xxx
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No I would not dream of inflicting my anger on her, we used to be bosom buddies at work, commiserating with each other on a daily basis. And I do know about the agonies of the people on here who are turned down for benefits and I can greatly appreciate their frustrations and angers. Just some days you cannot cope with it and it all comes back, which I would think is the same for others.
And thanks Feather I've watched Food Hospital now. I noted that the focus was on the ESR as being the indicator of her disease activity rather than the RA symptoms, which flies in the face of everything we on this site observe - but is quite relevant to me I guess and makes easier tv production! I eat pretty much all of the foods we are meant to and my ESR is still sitting happily at 54 (although age makes a difference too). Maybe it's because I'm still too fat and eat a bit too much red meat? Interesting for me to see the kid with eczema - that's just what I was like. Also to see the young man who wouldn't eat veg (phobic) as that's just what my son is like and it worries me rotten. I've sent him the link. TTx
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Thought the focus on ESR was a bit glib. Hers was 28 and it went down to under 20. She did say that it fell from her normal range but even so it was a bit naff making ESR the criteria for success when pretty much every web site points out that its a blunt instrument. But then that's show biz, I suppose.
Sounds like the programme was pretty useful for you, though, maybe seeing his own behaviour on the telly will get through to your son! Sounds patronising of me, but the young woman's RA & something about her bland smile hit me in the guts so I guess TV is powerful.
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She had been though a lot for one so young hadn't she and I know just what you mean about the bland smile? Son emailed me back saying "I would rather have eczema than contemplate giving up dairy" so I don't think I pressed the right button but then he's very sharp do he would see the summary and know where I was coming from before watching the full programme. He gags at veg and scratches after dairy so I'm on a losing wicket even trying! TTx
I saw it too and yes i eat pretty much what they suggested.my esr is 8 but i am feeeling very achy today and fingers are really sore. When i first started with RA and had all over excruciating pain and visible swellings in my knees and ankles my esr was 5!! I dont pay attention to bloods these days. As far as i can remember she didnt say if her pain and swelling was improved. I thought it was all a bit condescending. But as was previously said it all for good T V xxx
L the campaigns need to start with a name change as RA is an auto immune disease and I'm sick of it being dimished as a bit of stifness and I should take a paracetamol! The ignorance annoys me at time especially in the media
I agree, it's not our bones or joints that are the fundamental problem, is it? It's our wonky immune systems. And I also wonder what causes all this auto-immune disease. I had a wonderful cat with hyperthyroidism which has become very common in cats & some vets think the cause is 'environmental'. I know that term covers a multitude of sins but most cats have a perfectly healthy lifestyle ..... except perhaps for whatever rubbish goes into cat food .......
Hello...I totally agree with you..we need a campaign to raise awareness that it is not old age, woman's problems, everyone get's stiff at our age..sick of all these comments..the best one I have had is by a GP ' you look healthy enough to me' have reported that comment to the Consultant who has written it in my notes..and was going to write to the Practice.
Count me in if you start the campaign...the support group near me was disbanded due to the lack of support..I would like to get another up and running. Bring it on..I say . x
I absoluted hated this programme and sat there in tears of frustration because, although they featured a younger person, and made a point of differentiating between RA and OA, I felt it was so "lighweight", patronising and would have left people who didn't know better with the impression that eating the recommended diet and losing weight could change the long term outcome of the disease. And since when was "being overwieght one of the major causes of inflammation in the joints?" Grrrrrr. I've already had my first phone call from an excited friend, who told me she had seen the programme and written it all down for me - presumably genuinely believing that by following the diet I am going to get better. It was so kind of her, but just shows that the programme does nothing to "help the cause" .
Rockpool, I was interested to read what your GP said to you about looking healthy. I have had that too and the best of the recent doctor comments was "well I don't know why you are feeling depressed and unwell - your blood tests are ok". Beggars belief doesn't it?
My current GP though is very good and he refers to RA as "Rheumatoid Disease" in recognition of its complexity and wide-ranging effects. He also told me recently that, in his view, rheumatoid disease is probably one of the most complex diseases a doctor can be involved with. I wish everyone thought like he does.
I wonder whether I gave the impression that I liked the programme, I didn't. The effect it had on me involved ignoring the condescending, trite 'quick fix' format and instead focusing on the young woman & imagining what she had been through already. Consequently I didn't really take in what they said about diet, I was off thinking about this complex disease and its impact. But then I am so sick of the media and its nasty, preachy, prurient intrusions into our lives (e.g. this programme's close relative, Embarrassing Bodies) that I was probably never going to take its 'message' seriously.
I thought that other people who know nothing about RA might have also been struck by the very brief but vivid explanation of what severe RA involves - they did state quite uncompromisingly that the disease destroys joints from the inside - but perhaps I'm naive & dietary / 'lifestyle' advice will grab peoples' attention over all else any day.
I was close to tears too. Not of frustration because I'm not expecting the telly to be of much use to anyone but because I'm still new enough to all this to have moments when the serious nature of the disease suddenly hits me. I like to think I've got my head around it, certainly I've learnt quite a lot about it in a short time, but emotionally I'm not there yet.
I watched it last night was totally underwhelmed by it. Being Asian, tumeric/ginger feature quite heavily in my diet, and whilst off meds, my ESR is holding steady in the 60s. Although it did try and point out that RA could affect anyone of any age, and I did feel quite sorry for Beth having gone through so much at her age, the programme didn't refer to the cocktail of drugs she is taking etc. But I suppose it was a food programme in the end. Nx
I did wonder whether RA is less common amongst Asian people, given that turmeric and ginger are widely recognised as having an anti-inflammatory effect. You wonder where the evidence is for their properties, that might have been quite interesting.
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