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RA implant

bimblebimble Posts: 42
edited 2. Jan 2015, 16:36 in Living with Arthritis archive
There's an article in today's Daily Telegraph about an electronic implant that 'can reverse' severe RA. Don't know if it's of interest to any of you who suffer from this.
Just finished the food shopping, hooray!
Happy Christmas to everyone!
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Comments

  • mellman01mellman01 Posts: 5,303
    edited 30. Nov -1, 00:00
    Why has no one replied to this post for Gods sake!?. when Len and Del were on here it may have been a tad turbulent but it was at least vibrant, when I first come on I was struggling to deal with and understand OA and this site was a rock, I use to get such good advice it was so helpful but now its a silted up stagnant back water, and the craziest thing is hose posters who ganged up on them and got them evicted don't post anyway its unbelievable, I did say on more than one occasion when it was all going on that if we don't watch out the trolls win and this forum will die and the ones who will suffer the most will be those those with RA and OA desperate for advice and thats exactly whats happened, it was unheard of posts like this going unanswered but now it happens all the time.
    And getting rid of Del was a monumental own goal if ever there was one, he was an incredible mine of useful information on working issues it was so short sighted and just plain stupid/moronic to push him out into the cyber void they did, and Len was a real laugh and he never ever upset or posted anything on the working matters or living with arthritis forum he was only ever interested in having a laugh on the chat forum but some incredibly bitter and twisted posters couldn't match his whit and intellect so they went behind his back and colluded and manipulated things in the shadows so the MOD's got shot of him way to go trolls, shame on them all, if dear old Val was still alive she'd be shaking her head in disgust God rest her soul.

    Merry ***** Christmas I hope you trolls are happy with what you have achieved. :xmas_evil:
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    Ignore him, Bimble, he's hardly a constant and supportive presence but obviously felt the need to criticise those of us who do take the time and trouble to post but who are also currently occupied with preparations for Christmas.

    I saw the headline in yesterday's Daily Mirror and fell about laughing - the red tops love finding 'cures' for arthritis and this would appear to be another variation of what has gone before; this sounds like a glorified TENs to me but, as with all things, it may help some but not others. Until we find a way to repair our damaged immune systems then, and only then, will something resembling a 'cure' be found.

    I hope you have an enjoyable festive season - don't overdo things too much! I wish you well. DD

    d098.gif
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • mellman01mellman01 Posts: 5,303
    edited 30. Nov -1, 00:00
    I'm right though and you ****** well know it. :mrgreen:
  • theresaktheresak Posts: 1,998
    edited 30. Nov -1, 00:00
    Hi Bimble,


    I saw the article you mention, and I think the real issue here is that research into RA continues apace. Whether or not the implant works, there is a lot of research going on into how best to tackle this disease.

    When I was diagnosed nine years ago, I was told I was in a much better position than say, 40 years ago, as there are so many drugs out there. It's a very frustrating business trying them out and hoping they work - but at least they are there to be tried.Who knows what will be available twenty years hence?

    Hope you have a lovely Christmas,

    Tezz x
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    There is on-going research into RA and other forms, which is undoubtedly a good thing, but any form of auto-immune arthritis is complex. I have been told many things over the years concerning reducing my meds and the lessening of pain but none have come to pass. I still feel very strongly that the quicker the diagnosis, and the faster one begins the meds, the better the outcome may be. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • bimblebimble Posts: 42
    edited 30. Nov -1, 00:00
    Gosh! Didn't mean to cause an upset! Makes life a bit more interesting!
    Merry Christmas!
  • hileena111hileena111 Posts: 7,099
    edited 24. Dec 2014, 10:28
    Don't worry about it bimble :xmas_lol:
    Did you notice the date you posted that first one and the date he came on ranting and raving about no answer.....1 day later.....as if your post had been there for ages
    :roll:
    Ignore him
    Hope you have a great Christmas and a Happy New Year

    Love
    Hileena
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    You haven't, Bimble, far from it. :) Mell is known for his rants, his re-hashing of tired forum history and his criticism of others not doing what he doesn't do, but I am sorry that he picked your thread on which to fire his typed scattershot!

    I hope you enjoy your Christmas and are able to get in as much rest and quiet time as you need. I am sure the forum will be back in full swing once the next week or so is out of the way and we've all recovered. DD

    :candycane:
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • SloshSlosh Posts: 3,194
    edited 30. Nov -1, 00:00
    I read the article on the BBC news website about this which was more considered and did say it was early stages for this treatment and larger scale trials will be needed but so far there had been some positive results although it was a small trial. My nephew and his wife work in medical research and will stress that while it continues for all sorts of illnesses/diseases it is not a quick process.
    The most important thing is that research is being done.
    He did not say you will not be storm tossed, you will not be sore distressed, you will not be work weary. He said you will not be overcome.
    Julian of Norwich
  • trepolpentrepolpen Posts: 498
    edited 30. Nov -1, 00:00
    they had this on our local radio saying they have got a cure for RA

    the Daily Mail & Express have had loads of cures every month so expect this one will be as good as the rest :xmas_sad:
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    I feel much more positively about the implant than some of you. It is early stages but what is exciting is it the only thing that is being trialled that doesn't involve drugs. Something that can 'switch off' inflammation would be a wonderful thing. I think it is a bit shortsighted to dismiss it out of hand.
  • lulubell69lulubell69 Posts: 110
    edited 30. Nov -1, 00:00
    I totally agree salamander. This appears to be a different approach to attacking the causes of RA, no drugs... I feel very optimistic about this one. Maybe it's too late for some but for others this may just be what the doctor ordered... Only time will tell.
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    Those who are interested in the implant might want to read this article that was in the NYTimes. Very interesting indeed.

    http://www.nytimes.com/2014/05/25/magazine/can-the-nervous-system-be-hacked.html?_r=2

    That flat-earthers will probably prefer to stick their fingers in their ears.
  • bubbadogbubbadog Posts: 5,852
    edited 30. Nov -1, 00:00
    I saw the Implant on the news and the chap who had it, I did get excited until my OH said it was only in the trial stage and if it does go ahead it wouldn't become available in my life time! It is always good to hear about help and cures for diseases being found as one day any serious health/disease like RA can be cleared with a drug.
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    bubbadog wrote:
    I saw the Implant on the news and the chap who had it, I did get excited until my OH said it was only in the trial stage and if it does go ahead it wouldn't become available in my life time! It is always good to hear about help and cures for diseases being found as one day any serious health/disease like RA can be cleared with a drug.


    Bubba, why did your OH think that? Something like that can go from trial to use in a short time. It's not like drugs which take much longer.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    There can be some time between a product being developed and NICE etc. deciding it's worth the cost to the taxpayer. If it doesn't then it already is of limited use if one does not have a healthy bank balance; we have no idea about the true cost of medications thanks to the NHS.

    It's worth remembering that drug-free options are there should one wish to choose that route - I for one am grateful for the medications that have slowed the progression of my PsA. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    There can be some time between a product being developed and NICE etc. deciding it's worth the cost to the taxpayer. If it doesn't then it already is of limited use if one does not have a healthy bank balance; we have no idea about the true cost of medications thanks to the NHS.

    It's worth remembering that drug-free options are there should one wish to choose that route - I for one am grateful for the medications that have slowed the progression of my PsA. DD[

    What drug free options are you talking about DD? Please remind me as I'm not doing too well on them, you might well be grateful for the drugs but they haven't served me well. I think something like this is a fantastic breakthrough and it could be approved relatively quickly.
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I'd have thought that was obvious which is why I didn't bother typing a list: acupuncture, hydrotherapy, diet, Chinese herbs (many promises displayed on their shop windows), TENS and all the other stuff that provides temporary relief for some. There is also my late FIL's approach to his OA and RA which was to take nothing at all (but having been a PoW in German camps in WW2 he knew a little about enduring hardship). His view was that the docs could do nothing but he wasn't quite right on that front.

    It has taken me years of trying various combinations of meds for my PsA before I found my unholy trio, and it was the development of inhalers to combat asthma that literally saved my life when I was twelve, but people still die from that disease; surely they shouldn't, given what is now available both in medical knowledge and medications, but they do.

    I am grateful for what my meds have achieved in terms of slowing my PsA but that is all: I do not enjoy the constant, on-going, unremitting and grinding pain of the OA, I do not enjoy having to use my walking aids, I don't really enjoy injecting and swallowing, I don't enjoy dealing with toe nails which fall off but things could be worse. If I didn't take the meds, and use the aids, I would be far worse off than I am. I have to make the best of what I have and I hope I do.

    I hope that your hopes and dreams about this new 'breakthrough' are proved right and that you are one of the ones who can benefit. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • salamandersalamander Posts: 2,028
    edited 30. Nov -1, 00:00
    I've known you a long time DD and I'm amazed you are touting things like acupuncture and Chinese herbs as treatment for inflammatory arthritis.
    A scientific breakthrough of this kind is simply not on the same level. It is also hoped it will help with other diseases such as diabetes etc.

    Also, I'm not so self obsessed that I think it is all about me (unlike some on here). This may, or may not be the answer for some but gives hope for another way forward. Think back to the first heart pacemaker, think of implants for Parkinson's, the first heart transplant. You truly are a flat-earther if you entirely discount the possibility of medical advancement.

    Paragraph removed by Mod YEH
    House rule 1 states 'Please respect other users ...'
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    As one with a vested interest in this, I have read carefully, not just the tabloids but also the more reliable sites. These are my notes:

    1. This was reported in August but neither Arthritis Care or Arthritis Research UK, our two most reliable sites, have seen it as being worthy of note.

    2. The hope is to 'achieve remission in 20% to 30% of patients'. (ie it won't do much for 70%-80% of patients.)

    4. Researchers say the main advantage of the electrical devices over drug treatments is that they may not cause as many side effects. (N.B. MAY not.)

    Apparently, 'the arthritis-regulating device is implanted in the patient’s neck and wraps around the vagus nerve, a bundle of nerve fibers that communicates sensory information from internal organs and controls involuntary body functions such as heart rate and digestion. The device stimulates the nerve at regular intervals in a particular pattern that regulates the immune system, which is overactive in rheumatoid arthritis.' (http://www.technologyreview.com/news/518511/implanted-device-controls-rheumatoid-arthritis/ )

    I don't want to go chucking cold water over anyone's hopes but I have always regarded false hope as being the real killer. Even if this treatment should work for the 20%-30%, I suspect tons of proper research, as opposed to a very small trial, would be required.

    (Thank you, Mod YEH. Those sorts of gratuitously offensive comments have no place on a forum such as this. )
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • dreamdaisydreamdaisy Posts: 31,567 ✭✭✭
    edited 30. Nov -1, 00:00
    I would like to extend my thanks to Mod YEH for removing the final paragraph in Salamander's last post. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Mat48Mat48 Posts: 1,161
    edited 30. Nov -1, 00:00
    I don't come here much at all just now but I did spot this post and thought I'd add a link on to a very interesting programme on BBC radio four about the Vagus Nerve five or six weeks ago. As one who has not tolerated many drugs since my RA began I think this research is the most exciting I've heard of in relation to all types of inflammatory diseases, since I was diagnosed. It has already proved very successful for some people suffering from epilepsy who are unable to tolerate their drugs and is much more than a glorified tens I believe. My GP said he'd listened t this programme and found it very exciting too. I also found it reassuring to know that not everything happening in research relates to pharmacutical products only. http://www.bbc.co.uk/programmes/b04pv6kq

    Happy New Year one and all. Mat x
    If you get lemons, make lemonade
  • pot80pot80 Posts: 109
    edited 30. Nov -1, 00:00
    A short snippet in The Times gave mention to this and if my memory serves me correctly merely said that out of 22 people half of them benefitted from the new treatment. I doubt whether I will see it in my lifetime by the time it has been developed fully. If it is produced satisfactorily I wish the younger folk well and hope that it comes.
  • stickywicketstickywicket Posts: 25,993 ✭✭✭
    edited 30. Nov -1, 00:00
    I see ARUK do have a report on this. I apologise. I have just found it by accident. When I tried their search engine previously nothing came up.

    You can read their report here. It says 'it is hoped that it could be in widespread use within a decade' but concludes 'This new study is interesting - however, it is a small sample size and more research is needed into the long-term effects of this intervention." - See more at: http://tinyurl.com/pkog7td
    “There is always a well-known solution to every human problem - neat, plausible, and wrong.” H.L. Mencken
  • Mat48Mat48 Posts: 1,161
    edited 30. Nov -1, 00:00
    The radio 4 programme is very easy to listen to and somehow makes me feel more positive about the trials and the way this might move forward than the articles you've attached - which I have read too.
    If you get lemons, make lemonade
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