Please log onto the home page - www.thealzheimerspouse.com - and read the latest article under the Daily News concerning concerns over the BAPIII drug trial that many of your spouses are participating in. It is the same trial from which Sid was dropped due to his previous brain bleeds.
Have any of you in the trial been notified of these problems, had the problems, been dropped from the trial?
I receive alerts from google on any mention of Bap so I did read the article. I don't remember whether I mentioned this before, but after the 3rd infusion my husband became very confused and exhibited strange behaviours. As a result he was scheduled for an exta MRI. This was especially important as we were setting off on a trip to Italy. We were assured that the MRI showed no brain bleeding or swelling and were told we could go ahead. We have not been notified of the problems in this trial but my husband is scheduled for his 4th infusion this month, so I will definitely be asking a lot of questions.
My DH had the Apoe4 gene, which we learned from the study. They told us he was getting the lowest dose. So far no side effects. He is due for his fourth infusion this month. There have been no changes. I think he is getting the placebo.
DH is in the study. We have to go Thurs. for the clinic interview and MRI. He doesn't have the APOE4 gene. He has had 2 infusions and hasn't had any side effects but I haven't noticed any improvement. I'll let you know what they say. Whenever anything changes, we have to sign a new consent form.
DH has had no evidence of brain bleeding. My BIL is in the open-label phase so we know he is receiving the drug. He also has had no evidence of brain bleeding. He was in the phase II but had received the placebo in that phase. He is very far along in the disease. My SIL reported he has started fastening his seat belt on his own and he hasn't even know what the seat belt was for years. So here and there she sees some flashes but overall, he is still going downhill.
My DH is in the study and has had two infusions. Have noticed a slight decline in DH's ability to remember and complete tasks so I was assuming he is on the placebo. We were just at the hosp for MRI and MMSE last week. I will certainly contact the Dr. and inquire re this new info. Thanks so much.
My husband rec'd only one infuson. He was then dropped from the study because Elan went back and reviewed the original MRI for all participants and his showed microbleeds in the brain. He has continued to be followed. There is concern because he has vasogenic edema which has not lessened. The study dr says that this has been seen in others but that their swelling has decreased after a few months - except in our case. Elan is concerned and we just went for an extra MRI yesterday. I don't know if his recent downturn has anything to do with this.
For those in this study - any update as to whether you are noticing any change, holding steady, etc. I realize you don't know if they are getting the real thing. Thought I would ask since we are also talking about the dimebon study.
Thanks for asking. My husband recieved his last blinded infusion. Hopefully he will get into the the open label in a few months. So far I would say he's been fairly stable so I can't complain.
My husband has one more infusion to go........Of course, we don't know what he is receiving, but he certainly has declined. However, who knows----perhaps it would have been a faster decline WITHOUT it?
My husband had his last infusion this month. As I mentioned elsewhere he has declined significantly since our trip to Italy in March. There is no way we would be travelling anywhere given the way he is now. He has 2 more MRI's and then we are supposed to be in the open label. We have nothing to lose at this point so we will certainly carry on. The good thing is that he is now attending a day program twice a week and is beginning to enjoy it which is such a relief. I think I had a harder time seeing him go but I'm starting to adjust and enjoy some "me" time.
A reason I brought this up is that I was thinking of getting him into the study at OHSU now. If we can't travel and work like I dream and are thus pretty much staying in the Vancouver/Portland area, then no reason not too. And he might get the real thing and it might help and slow the progression. So I wanted to know if anyone was seeing positive results.
My DH goes for his infusion # 4 next month. So far no improvement. Just some decline. He's not a carrier of the APOE4 so I was really hopeful. He's had no side effects to speak of so that's good. We are looking forward to the open label part so I'll know they are actually putting something into that bag and not just sugar water.