how far along does the patient have to be? is there a point at which it is too late?

How far along was your Mom when they put her on. How old is your Mom ? Did she ever take Aricept and Namenda?

It is way too late for Ron.. for any new advancement in treatment, but I sure hope this pans out.. could help millions in the future.

Please keep us updated.

Judy

Same way with Ken,
Your right anything they can do to find a cure or make it easier would be great.

My mom will be 80 this year but physically is in great health. They say that anyone with mild to moderate AD is a candidate. My mother is still mild (I can't believe they call this mild)because on a mini-mental she scores a 20. I believe 14 -19 is moderate. I only know one other person in the study and she seems much worse off than my mother- Can't really take care of herself anymore and she is only in her 50's.

My mother was on aricept but had side effects and then on namenda which helped a bit but she was stubborn about taking medication and came off of it before the study began. If she had been on either drug, she could have stayed on them. But she is not allowed to start any new meds while in the study. (Study lasts for 18 months and then she can keep taking it through FDA approval, free of charge, if she chooses.)

The study requires the patient and caregiver go to the study site once monthly for a transfusion. There is no pain or side effects (for my mother.) The medicine is supposed to dissolve the plaque (I don't have a medical background but) from what I understand we have amiloid fluid in our brain that as we get older hardens and turns to plaque. This is what is believed to cause the lack of memory and other symptoms of AD. This medicine dissolves some of the plaques and which is carried away through the bloodstream. They know the plaques are dissolving but the study is too young to determine if once the plaques are gone, does normal memory get restored. That is what this study will determine. They did a similar study with mice and had incredible results (most of memory restored) but they can't give the medicine to humans the same way as they do to mice so they are not sure how impactful it will be.

This drug is in early stages and it might not be the cure or might need refinedment, but I think it is the beginning to a real breakthrough. I have to drive a total of 10 hours each month to get my mother and take her to the study but even if it doesn't help her, I think it is important to further the study of this. And it gives us hope - doing something seems better than doing nothing! The other drugs - aricept and namenda boost memory power but this is the first that seems to really get at the heart of the cause of AD. Let's all hope and pray.

I have my husband on a Pfyser study at the University of Utah called RaGE. I don't know if he is on a placebo or not, nor do I know if he would be much worse without the study meds. He is still declining, however. I would love to know the name of your study. Ken will be off his study in 6 months and I want to get him into another. If your study medication is being investigated at the University of Utah, they will let me move him to that study as soon as he is off this one.

Hi Dibbie,

I'm not familiar with RaGE. I think there is a lot going on in the way of new experimental treatments. The study my mother is in is called Expedition by Eli Lilly. There is an advertisement for it on this site. I'm in the Baltimore area so I really don't know if they have a site near you. I too don't know if my mother is on a placebo. (I actually wished she had some negative side effects, so I knew she was on the real drug). She has had three treatments (one infusion a month for the last three months). I have not seen any changes but my brother says she is remembering more (could be a coincidence - not sure.) If she is on a placebo, when the study is finished, she has the option of continuing until FDA approval and they would give her the drug then even if she was on a placebo. Who knows how she will be in 15 months though.
I hope these drugs are the answer for you and Ken!

Thank you Carol for sharing what you did about your mother. I wonder if you could give me more information.

My 102 year-old aunt, in perfect physical health, has been diagnosed with mild dementia. She lives in Hollywood, Fl. and tells me that at the assisted living home where she is, she is not given any medication for her condition.

Since I live 3000 miles away in Canada, I would like to get some opinions as to what US citizens know about treating the elderly, or what is the medical system view on the aging. She has good insurance and can afford to be well treated.

Thanks

Thank your so much for the information. I will talk to his study doctor and get him on the Expedition study ASAP

Hi Grandma70,

Wow she's 102 and just now being diagnosed with AD. Many patients have mild AD for 5 - 7 years and in that stage can usually still handle life pretty well.Hopefully, it will be a slow onset for her. There are several medications that help boost memory including aricept and namenda that can slow the progress. The experimental study my mom is on is called the Expedition Study by Eli Lilly. I don't know if the study is going on in Florida. My mother is in Maryland. Also, they need a local caregiver to report on changes, concerns, etc. I hope you find something that works well for her situation.