RE Potential groundbreaking new Treatment for RA sufferers

Comments

  • SheilaD
    SheilaD Member Posts: 201
    edited 30. Nov -1, 00:00
    Hi Mat

    Thank you for putting that thread on, it makes interesting reading, something to watch for in the future :smile:

    Love n hugs

    SheilaD xx
  • stickywicket
    stickywicket Member Posts: 27,088
    edited 30. Nov -1, 00:00
    I must say, Mat, I clicked on this with years of scepticism behind me but it does sound promising if they've got some good results from trials. Doubt it'll do anything for old hands like me but it would be fantastic if it could stop things in their, very early, tracks.
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    Yes I too read with scepticism but I think it's the fact that they are researching and trialing new drugs and possible cures specifically for RA that heartens me. People are so ignorant and just assume all arthritis is wear and tear/ ageing and dismiss or say "oh I know my auntie had that in her thumbs" but they don't realise that RA and other autoimmune/ inflam arthers are systemic and affect people of all ages - make you feel rubbish as well as stiff and pained etc - and the drugs also make you feel pretty horrible and have a huge impact on your lifestyle.

    If anyone else wants to reply to the retired nurse who says it's all down to blood tests rather than x-rays I'd be delighted too. She says RA often goes into remission with drugs but it doesn't - it rarely goes into remission from everything I've read! And she obviously doesn't know that blood often doesn't tell the whole story either (has maybe never heard of sero-negative RA - grrrrr I fumed after reading that comment!)

    I was stalling yesterday on whacking up my dose of Methotrexate but then hands, wrists and elbows are so awful just now and I read that article and thought "what the hell?!" and went for the doubled dose! Saw my GP this morning for blood test and he professed amazement that I had consumed this doubled dose so willingly (i.e without the usual prevarication)so I told him "it was the article in the Mail wot dunnit!" Happy New Year to all. Matx
  • valval
    valval Member Posts: 14,911
    edited 30. Nov -1, 00:00
    it would be great if it works to get rid of all these tablets and there side affects would be heaven val
  • [Deleted User]
    [Deleted User] Posts: 0
    edited 30. Nov -1, 00:00
    Hi Mat,
    Thank you for that link. I really hope that this vaccine works and that we can get it soon. I cried when I read the article. I have been suffering for the last 8 years and I am only 33. I have never been in remission and I am practically disabled now. I can't imagine my live without pain any more. I so need this drug to work.
    Sorry for being a bit depressing here. It's just that this got my hopes up just a tiny bit and in moments like that I realise how difficult it is to live with RA.

    Wishing you all a better New Year!
  • nanasue
    nanasue Member Posts: 465
    edited 30. Nov -1, 00:00
    Hi Mat,

    Lets hope this is available as soon as possible and that it works for as many people as possible. Fingers crossed (ha-ha) even the painful ones!!!!!!

    Sue x
  • Mat48
    Mat48 Member Posts: 1,161
    edited 30. Nov -1, 00:00
    I feel almost bad for putting the link up now because it's so sad to think of people's hopes getting raised and then nothing coming of it. I find it good to see some the symptoms of RA pubicised because one of the things I find hardest is that people think of arthritis as one disease - not as lots of very different ones which require different medication and approaches to exercise etc.

    All forms of arthritis are awful I'm aware but the inflammatory ones are much less of a known quantity and so a lot of the general public tend to thing of Osteoarthritis as arthritis and not realise that RA is an autoimmune disease also a systemic one - as all the inflammatory arthritis's are - and they often make people feel flu-like and exhausted as well as causing pain and stiffness.

    The article doesn't reflect this aspect but it's the one I feel should be highlighted most because lots of people with inflammatory arthritis have M.E like symptoms long before they get joint pain so it would have been extra good if they had focused on that side of the disease - as well as the fact that many young people suffer terribly from arthritis but get very little sympathy from the older generations or their peer group. For instance I've read of people saying that they get shouted at by older people or the able bodied or people with buggies and visible disabilites if they have a blue disabled badge or are on public transport with crutches or a stick. That's what I find really depressing.

    I'm extremely fortunate because I only have a non-aggressive form of RA so far and the Methotrexate and physio seems to be working quite well to date (famous last words - I so hope not?!) but I know now that young people can get this disease very aggressively and find it so sad that it receives none of the attention or sympathy that other diseases such as cancer or MS seem to get, despite it being equally devastating for those who have it. And the same of course goes for Lupus, PA and AS and those much younger than me who get OA too - ignorance makes these diseases much harder to bear I feel and I've been lucky to not have this to cope with until I was 48 (now almost 49!).

    I really hope that this vaccine is made usable for sufferers soon and that the required funding for trials etc is forthcoming, because at the end of the day the economics of it are that patients who are diagnosed and treated asap and put on anti-tnfs (very expensive) are also often the ones who go into drug-induced remission, which then in turn saves tax payers the drain of disability benefit payments and additional healthcare and unemployment etc that are otherwise the inevitable outcome of not treating soon enough or properly in the first instance? Sorry to rant on but I feel so strongly about this now - having had a taste of being left in limbo-land and finding myself at the mercy of a very beleagured NHS.
  • tiggernut
    tiggernut Member Posts: 339
    edited 30. Nov -1, 00:00
    Sounds great if it works. Bit late for those of us already with deformaties and joint replacements but a bit of hope for newly diagnosed.

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