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TRIALS of Meds for Fibro Pain has anyone been on a trial using...

Posted , 6 users are following.

deb97936
deb97936

this product..' ALDAY (DS-5565) '...   I have know idea what other name it may have.   

Apparently this trial involves 1200 folk around the globe at 300/odd centres. 

Anyone here on it?? been on it?? thinking of doing it????

2 likes, 14 replies

14 Replies

  • Bee70
    Bee70 deb97936

    Posted

    Not heard of it, but if your going to give it ago, keep us informed with your findings. wink xx
  • loxie
    loxie deb97936

    Posted

    Just did a bit of reading up on it.  It would appear to be a trial by a Japan based pharmaceutical giant, initially across the far east.  The product is mirogabalin and its hoped to use it to treat diabetic neuropathy pain, herpetic pain and fibromyalgia pain.  Hope springs eternal eh.
    • carole28488
      carole28488 loxie

      Posted

      Is this new drug going to be like Lyrica...that is my magical pill..It takes the pain completely away, but for two days, I do nothing but laugh, as if I had laughing gas or verset....It has a lot of side effects, but hey, if they come out with a new one, I'll be more than glad to try it...
  • Meg53
    Meg53 deb97936

    Posted

    Sounds very interesting Deb. I looked up about it on line and it sounds very hopeful. Please let us know if you find out anymore about the progress they are making on getting it approved for fibro treatment. I will ask my specialist next time I see him. wink
  • deb97936
    deb97936

    Posted

    I'm not onit and haven't even contacted any body about it ...'yet'...  I'm always a bit wary of all the crappy side affects etc.  I don't have a very good GP where I live.  He cannot even set up a good monitering system of folk wieght and BP's before each visit (which the nurses would usually see to before the patient saw the doc)...   My friend died due to his negligence.  She was on serious trials for Rhuematoid and he never ever took her seriously when she had this serous pain that would flare up.  He never ever took her phone calls and messages to the Nurse who swore she'd passed them on each time about her 'severely HIGH' BP's...She was already on BP tablets.  For weeks she was doing tremendously well on this last trial and swore by it.  She was like her old self, till that dam pain kept cripling her from her back, round to her chest just under her boob.  

    Eventually she went to the doc late in the morning, Doc said, 'maybe it's your gall bladder playing up', giving her a script.  STILL NEVER addressed her severe BP results.  She died that afternoon.  It wasn't her gall bladder at all, it was her heart.  She always knew and felt it was her heart..poor sweetie.  Way to young.  

    So it's who do you trust??   One life here this time round, can you trust your GP.  

    Even though my friend was under the Australian specialists in regards to her Rhuemy and the Trials, it was her dam GP that let her down.  They'd even lose her blood tests on occasions which had to be done every two weeks, the results she'd have to discuss with the Australian specialist team over the phone to where she was in NZ.  

    I remember she didn't want to come off the latest trial because she had her mobility back and wasnt' tired, or in that dam pain zone constantly.  Excepting for that heart pain. She did have heart disease.  It was found in the autopsy report.  Yes she was never tested or whatever prior to any trials...  Obviously it's not a pre-recquisite (splg?) before any trials?

    • Meg53
      Meg53 deb97936

      Posted

      Oh wow, what a sad sad story, it sounds like some hard questions should be asked about the GPs competency. I guess it is hard to get good doctors in some areas of your country.

      I understand your reluctantance to get involved in anything to complex under those conditions. We can only wait and see what happens with all these new treatments they are working on and hope something worthwhile emerges.

      I am very sorry about the loss of your friend, it is truely sad, one is left feeling a great sense of loss, which never truely passes. Many gentle hugs. Meg

       

    • christine26761
      christine26761 deb97936

      Posted

      O' wow deb...how absolutely disgusting...really hope that doctor has been made accountable for what he didn't do...just amazing...we really have to trust them too...goodness me.,some doctors...seems that some are just sooooo incompetent ....really makes you stop and think...I feel sooo blessed that I have good doctors..and im in Australia too...there are lots of  places for reporting them too..which I would have no problem at all doing...be blessed deb....mmm trials.,,who would have even thought..gentle hugs.,have a nice day..:-( xxx
    • deb97936
      deb97936 christine26761

      Posted

      I thnk actually I have mentioned my friends plight on here before somewhere... I do tend to repeat myself these days.  tsk tsk..   Yes her partner laid a complaint but truly it gets you absolutely NO-Where here in NZ unless it's a situation of involving a doctor repeating many of the same issues, OR it's a celebrity involved case.

      Her Specialist in Melbourne was absolutely fantastic!! On the ball.  She had the worst type of Rhuemy one can get, Hypertension and Fibro on top, tsk tsk...   but that was never identified till she died of that massive heart attack.

      Doc wouldnt have had to bat an eyelid at the Medical board because  the Medical board here is only their to protect the Doc's and Specialists...  Butt covering at any and every turn!...

    • deb97936
      deb97936 christine26761

      Posted

      Forgot to mention, I rang up the Trial P3 crowd, awaiting a phone call in the next 3 - 4 days.  Apparently they have had a good response to the advertising.  Sadly because I do live a distance away from Wellington they may not consider me for the trial.  But then who knows????   
    • christine26761
      christine26761 deb97936

      Posted

      Just shocking deb...no where to go..no one to listen....should be charged!!:-)xx
    • Bee70
      Bee70 deb97936

      Posted

      Such sad news.  When drs just don't listen it makes one feel so angry. Pls don't give up, can you not change your drs ?

      Stay positive and if you feel this is the route to take, you should consider and weigh your options.  Every ones pains are different and only you can deceide which works for you the best.

      Gentle hugs and take one day at a time and stay calm and positive.  wink xx

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