New Drug being Trialled for Fibro

Posted , 9 users are following.

Morning ALL;  During my Never-ending Research, have come across a snippet from the South Australian newsletter re the increased acceptance of a new drug being trialled called "IMC-1".  (sorry though, still in trial stage and not for prescription, yet)....and they, the researchers from America, still feel that Fibro has a connection to the Herpes Virus......I found it very interesting, as I know you all will, too.   The page I pulled up re this, also mentions other cases, and research done by another doctor, whose sister has Fibro (He sounds French/Spanish....with his name and her's)..............happy and informative reading............Bron

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  • Posted

    Awesome Bron...must ask my GP if he had any info on it..I'd be in for a trial if it's still open..if not..that's really good to hear that Fibro is still on the work agenda..sometimes it takes a family member to have it as a catalyst for research hey? you've probably already heard on the news that it's snowing here..mm...a different look at the day..lol.. Be blessed Bron and have a lovely day..:-) xx
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  • Posted

    Hi Bronwyn, 

    It really does make me laugh that there are all these so called medications/cures floating around for fibro, yet getting a GP, or other health care professional  to believe a patient has it is like seeing father christmas fly over your house. I AM NOT disbeleiving what you have found is not beneficial for us but I am sooooo pee'd off with new 'evidence' not being picked up by 'medical experts' so to speak.

    Thanks for your continued research xx

     

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    • Posted

      Erykah; I don't remember saying "it was a cure"....if you read the relevant research, the medication is said "to be of great benefit to Fibro Sufferers"......as with ALL medical conditions, many years of research and trials are needed to be of ANY value...how many years have they been researching Cancer?   How many years have they been researching/treating HIV.....they  have found medications/treatments that "help" these sufferers, but No cure....by Cure, I mean "completely" getting rid of the disease/condition......I feel that if just one drug can alleviate the "pain/suffering" of Fibro, that in itself is a Big step.........and there must be "some" professionals who know/understand Fibro, otherwise there wouldn't be any Research............Bron
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    • Posted

      Of more interest to me is your comment that there may be a connection to the Herpes virus - if that is ever determined conclusively, it would make a great deal of sense.  I've always always been convinced that this condition is post infection or post viral - it would answer so many questions.  Post viral conditions already 'in existence' and recognised present with so many of the symptoms we suffer - particularly muscle pains and fatigue.  Has anyone ever been offered anti viral treatment of any kind?  There are known and tested drugs which have been around for decades for virus treatment and who knows, they may be very beneficial.  

      I'm getting very fed up with either no effective treatment, or the 'lets try this even though I know it doesn't work' attitudes of doctors.  I've just got back from a week's holiday where I only went walking on one single day and then suffered three days of almost unbearable pain and seized up completely, plus a stomach upset and total exhaustion.  This is ridiculous - I'm so not prepared to be so debilitated by something that doesn't seem to have any life threatening effects, cant be diagnosed by 90% of the medical profession and for which nobody can find either a cause or a 'cure'.  I do NOT want yet another pill to knock me out, ease the pain temporarily and get me out of the surgery PDQ - I want some bloody answers.  Investigating a viral cause would be common sense surely?

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    • Posted

      Hi Erykah,

      I know exactly what you mean... I explained to my doctor about a study that had been done on Fibro ladies, showing that they had far more nerve fibres (from a biopsy of tissue from hands) than the average person, my doctor looked at me like I was crackers! Another GP at my surgery that I'd seen in an emergency admitted to me that doctors know very little about this condition.

      But I am glad that it is being studied. At least the 'ologists studying it know that its real. lol.

      Having Fibro can make one very disillusioned and add to that a specialist or drs disbelief can make a bad situation a whole lot worse. Just my opinion.

      Wishing you better days ahead

      Angie x

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  • Posted

    How exciting. Meg
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  • Posted

    Morning Bronwyn That sounds very interesting, will have to see if they give a report on it, on how the trial went on it.Its always good to hear that research is being done and different trials are going on. hopefully with this going on hopefully 1 day their will be a cure for fibro. take care bron gentle hugsxsmile
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  • Posted

    This is interesting I never knew fibro cud be linked to a virus. All my 'issues' started after a bout of shingles, but because I was found to have an underactive thyroid dr's think all the pain is down to that even tho my levels are now 'normal'.
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    • Posted

      Morning Carli;   I believe in both aspects........I, too, have had many exposures to the Herpes virus (which fits in with what the researchers are saying), and my thyroid test came in "as border-line".  I am wondering if this Virus actually, also, attacks our Thyroid, causing it to "underfunction"..........I have started taking Oroxine, and do say, I Don't have the Continual Fatigue/lethargy (but do also still have my 2 hour nap to get through the day).....and am awaiting our Hot weather, to see how my "burning" sensation is this year, which is something that I find very hard to tolerate.........as we all say, it Is a trial and error, so I willl just keep myself occupied by following through on any updates that are forwarded through from the Fibro Researchers/Organizations that send me news updates, and see how they apply to me????.....do you do the same??,  as I really feel that I learn a lot from these, and from what I read on this forum................try and have a nice day..............Bronwink(love these faces....they help me to express how I am feeling)
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  • Posted

    I developed the Herpes virus 18 months after my husband died

    when it errups it was brought on by stress and it affects me in my intimate area,   I had not  had any symptoms whilst my husband was alive and I had not had a partner since he died 

    The Doctor said that the Herpes virus is stored at the base of the spine

    and it can errupt as cold sores shingles or herpes when you are run down or stressed

    I would love some more research to be done as to whether itis linked to Fibro

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