Some people suggested that the University of Utah was doing a trial on this IVIG infusion and needed people. Has anyone an opinion or a thought about it?
OHSU is doing it. We are considering it but waiting until after the neurologist appointment next week to get her opinion on how whether she believes he has gone from aMCI to dementia.
I will re-read it and get back to you. It has been a month since I read it but have not really concentrated on since I knew we would make no decision until after his neuro appt.
Are you considering it? Did you google it? I found out about it online - that is how I found out OHSU is doing it. I like the fact the infusions can be done at home after the first 3.
My sister who is a nurse told me about it, she had overheard some people talking about the university needing test subjects. Salt Lake City is still a four hour drive for us so I would want to feel we would get some benefit from it and if it is one of those where he might get a placebo, no dice. Also I think I'm just still in that mode where I want to look at everything that might help but we might be too far gone for anything now. I wouldn't want to keep him at this stage indefinitely. It's too hard on both of us.
I agree jules - I tend to want to try things that have already showed promise. The thought of 'wasting' 18 months if we get the placebo while he declines is a hard one to get around. I have ordered some Korean Red Ginseng. I found an article from Korea where they used it in a study and found good results -improvement in cognitive function. When stopped, they started to decline. The negative of the study is there was no control/placebo group. But, I am willing to try that. I think Art is more comfortable with trying coconut oil and others vs a study. I may have to stop the coconut oil for a while cause he is gaining weight.
What difference does it make if a man dying of dementia is overweight? I just don't know that anyone currently suffering dementia will be helped or their symptoms "reversed" by anything out there.
The main goal in treating AD is to keep the person stable as long as possible. For example, 3 more years of functional living is better than 6 months. I'm referring to functional as my husband is - being able to socialize, handle their own ADL's, and know who everyone is. I'm not referring to functional as breathing and walking.
Since all the problems caused by overweight - high blood pressure, diabetes, poor circulation - accelerate the decline in the brain, the doctors are concerned about obesity. Sid has all of the above, and the neurologist was very concerned that he gained more weight at the last visit.
I do agree, however, that if someone is in a later stage of AD (6 or 7), let them be happy and eat what they want. Generally, in the end stages, they can't eat anyway or if they can, it doesn't seem to get metabolized.
As for "reversal" of symptoms. We saw it happen with a friend who was in the Florizan (sp?) trial. He was on a slippery slope downhill, and that drug turned him around 90%. It was a miracle. And guess what? The drug company determined that "statistically", not enough people were helped enough by the drug, so they pulled it. After a month off of the drug, he started slipping again.
Joan, Intravenous immune globulin (IVIG) is a blood product administered intravenously . It contains the pooled IgG immunoglobulins. I copied and pasted that from the article since my spelling sucks. I'm still looking at it and want to ask my sister for more info. I was just too tired last night to do anymore with it but wanted to see if anyone here had input. Charlotte, could you post a link to the article or information you read if you can find it?
http://www.ohsu.edu/research/rda/so/viewstudy.php?id=IRB00004399 http://clinicaltrials.gov/ct2/show/NCT00818662 - best one.
That is the link to the trial at OHSU. They already use this infusion for other diseases and they want to see if it will work for AD. From wikipedia: Intravenous immune globulin (IVIG) is a blood product administered intravenously. It contains the pooled IgG immunoglobulins (antibodies) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:
* Immune deficiencies - Immune deficiencies such as X-linked agammaglobulinemia, hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions ([secondary immune deficiencies), featuring low antibody levels. * Inflammatory and autoimmune diseases. * Acute infections.
There is a warning that it can cause kidney damage, so if the patient is over 65 with kidney problems, they should not.
IVIG has been safely used as an infusion for many years. If you buy into the theory that amyloid plaques and neurofibrillary tangles may be caused by an imflammatory process then the use of IVIG makes sense. Think of all the interest in Enbrel last year?
After the RAGE study is completed, would like to see my husband try IVIG study. All known drugs and clinical trials, hopefully work to treat symptoms and to slow the process. The longer I research and live with this disease the more I realize that holding this disease at bay is all we can wish for unless a miracle happens to disolve the plaques and unravel the tangles. Seems slim. Again, not to be a nay sayer, but once a dead neuron always a dead neuron. Trick is to get diagnosis early and into treatment.