I see this vaccine is in the news with J&J announcing they will be seeking FDA approval for it in 2012/2013. They are very enthuiastic - but I'm not sure that means anything other than they are trying to make their shareholders happy...
I was looking through old posts and see that many here had their loved ones in the trial. I also see that my DH would not qualify for the trial as his diagnosis (a year ago) was MCI, and the trial is recruiting for Mild to moderate AD.
DH refuses to go back for the one year follow up, because he knows as well as I, his diagnosis would probably be changed to probable AD. And God love him, his reasoning tells him, if I don't go to the doctor, he can't tell me I have AD - so to avoid AD all I need to do is avoid the doctor :)
BUT, if this drug is as effective as the company seems to believe, maybe I could talk him into going for the follow-up in order to get into the trial.
So, are you folks in the trial as enthusiastic as J&J? Or is this just another of the many drugs that turns out to disappoint?
I recall that most vaccine trials thus far have not panned out much. The name of this drug always stops me short. Beelzulbub is where my brain always goes with it.
My DH has been in this trial for about 18 months. At first it was a blind study and we did not know which DH was getting, the placebo or the drug. For the last year he was in the open label study and was getting the drug. I recently took him out of the study due to his health problems. He had not ill effects from the infusions. Recently, he has had a bad time with neuropathy, or rather polyneuropathy. He described his pain as stabbing, pinching , pins and needles in arms, hands,leg, feet. When he had chest pains we went to the ER. It was not his heart. He went to doctors and had tests and complained every ten minutes or so. We finally got the diagnosis and he is neurontin. He also saw a psychiatrist who put him on bu-spar. I cannot say whether the bapineuzemab had any effect or not. We would have continued, but his pain was overtaking our lives and I could not handle the study also and neither could he. He did decline while on the study, but may have declined more without it. Who knows.
My husband did the trial for 18 months, but with the infusions. We still don't know whether or not he was receiving the drug, but he did try the open label . After 3 of the open label infusions, we decided that he would stop. From what I understand, it may very well be the drug for those in the earliest of stages OR before symptoms show. Again, back at square one as far as diagnosis before symptoms start. By the time my husband was diagnosed, the damage had been done. Did it help in preventing more plaque? Perhaps, but we will never know.
I didn't think the injection was as successful as the infusion.......That being said, it may very well have a place in treating AD in the future........That would be something.
My husband has been in this trial 3 years, in open label for half that time. He was in the beginning stage when he started. IMO he's still doing pretty well -able to be on his own when I go to work. He still takes care of the house inside and out, and we still have decent conversations (even if he forgets some things).
His younger brother was diagnosed shortly before DH and started the bap trial two years after my husband, when he was in late /mid stage. Not sure if BIL was on drug or placebo. Last I heard BIL may not be eligible for open label since his MMSE score was 7 and he is now incontinent needing 24/7 care.
Most of the researchers are in agreement that treatment is needed sooner to be effective. Check out clinicaltrials.gov to see if there are studies that would accept your husband in the MCI stage. Best of luck to you.