Dr. Sullivan...Hi its me Chanel..I msgd awhile ago whilst being worked up in Neurology. I am diagnosed w. Frontotemporal Dementia Behavior Variant. This section is your latest video so sorry to jump in ! Wanted to update you and see if you have any FTD vids in the works. This is a struggle because i don't fit the stereotype that comes to mind of an elderly person and all i can say to anyone asking is "I have what Bruce Willis has". ..I'm happy to do any work for you and your subs on the FTD front (oooohhh no pun intented...oh that was bad. LOL). xo Chanel
The short answer, no. I have the APOE 4 gene and am very concerned about my future brain health, but what you just described didn't sound like it is worth the price of admission. I'd be curious to know the percentage of help diet, excercise and social benefits, as described in your 10 video series would be. I throughly enjoyed that series and look forword to more. I'm so grateful to have found your channel and you!
I lost my father to this hideous disease during the Co-vid "pandemic" . Thank you for the info ,channel and hope, tbh I am frightened beyond anything I've ever faced🥺 . my doctor discussed it with me testing and what treatment was available. I have general worker insurance and as you know coverage continues to evaporate and cost rises. In answer to your question.. not yet as at 60yrs. old bleeds and bruising are far easier than in my 20's-30's I don't want to increase that trend. again I know it's not easy producing these channels so a tip of my hat and a HUGE THANK YOU
My neurologist is currently preparing ti do the spinal fluid test, to check for my 42-40 BETA Amyloid APOE. Then depending on my results and levels. They would continue to move to administering Leqembi infusions. I would love to be a patient that will be able to contribute to the program. Helping others benefit from successful medication.
Doctor Sullivan asks a tough question here. The FDA is not the end all. But while this seems to be great news, we may not know enough. And certainly, the cost is out of reality. But I can see, just as she says, that there are so many who need hope in regards to this disease that he demand is sure to be high. I really like the way this doctor looks at alot of issues around medications and neurological conditions.
I am Apoe 3/4 and have had MCI for several years and am 66. I can't take Aricept due to low HR. I feel Leqembi needs a lot more research. In my opinion it seems to only be "approved" so quickly for the $$ and would use up a lot of Medicare funds when it seems Medicare is struggling as it is. My understanding with a Secondary insurance is that it is to pay the remaining 20% for everything Medicare approves. I could see the Secondary premium rates increasing with expensive treatments. I am very hesitant to take anything "new" especially that has been fast-tracked. Look at what info is coming out about the adverse effects of the C*v*d injection. 😥
Yes I would take the drug after genetic testing to determine if in the higher risk category for brain hemorrage and/or edema. And would want to be monitored regularly for these effects. I learned a lot and you're a very good teacher. Alzeiheimer's runs in our family both maternal and paternal sides so paying close attention - I'm not showing signs yet.
Absolutely I would - when faced with the prospect of losing more and more function - 6 months is a good amount of time and it could be longer. Yes it is hope. Without it one will just continue to deteriorate
Public needs to push. Doctors are slow to pick up idea of early treatment. Studies over 18 mos may well show over 50% improvement. This is a huge jump in treatment for dementia compared to past. Only 5 % show edema or bleeding. Only 3% are symptomatic.
Researching more about lecanemab is something that seems interesting to me. Please, I would appreciate it if people who have mild Alzheimer's respond if they would agree to treatment with this drug to know their perspective. Since, as we know, it can give more months of life in the early phase of Alzheimer's.
The problem with this study, as seems to be the problem with all studies, is that they use relative numbers instead of absolute numbers. For example they say that there was a 27% improvement in rate of decline for the Leqembi group over the placebo group. Unfortunately, that is the relative number. The absolute number is .45% (half of 1%) slower decline than the placebo group. How do they arrive at that 27% number? The Leqembi group's decline was 1.21 over 18 months. The placebo group's decline was 1.66. That is a difference of .45. So, if you divide .45 by 1.66 you get 27%. Most people in the study had 0 decline over 18 months anyway. In reality no one would notice a difference of .45 in the progression of Alzheimer's disease. So are you willing to take a risk of brain swelling or brain bleeding, among other side affects, to get a .45 improvement over 18 months. Having said that, supposedly the level of Amyloid Plaque in the brain was reduced by 60% (I couldn't figure out if that is the relative number or absolute number ... I suspect relative). That sounds good, but no one knows what it means. In fact, there is disagreement on whether Amyloid Plaque causes Alzheimer's or if Alzheimer's cause the plaque. This drug or others like it may turn out to me a lifesaver over time and that is exciting. Unfortunately, taking this drug now will not change much. You should also know that the use of relative numbers is how many drugs (maybe most) get approval. For example Statin's were approved because they supposedly reduced your risk of a heart attack by 36% (Relative). The absolute number is 1%. I just wish the doctors and drug companies would be honest and give patients both the relative and absolute numbers. At least they could make informed decisions.
I was approved for this drug. No one explained the “Black Box” warning to me. I found it myself and was surprised to see that the warnings apply to me. I have had a brain bleed in the past, I have A-fib and take aspirin for that. The arteries in my entire body have been inflamed by a Vasculitis. I have not had genetic testing. I’m upset because I feel like my doctor pushed me for numbers (marketing)
I have had one dose. Felt like I had a head cold without the cold. Could not think without confusion for 2 days. Pretty much cleared up after day 3. I am not sure if I am going to continue. Feeling overwhelmed and emotional.
Dr. Sullivan...Hi its me Chanel..I msgd awhile ago whilst being worked up in Neurology. I am diagnosed w. Frontotemporal Dementia Behavior Variant. This section is your latest video so sorry to jump in ! Wanted to update you and see if you have any FTD vids in the works. This is a struggle because i don't fit the stereotype that comes to mind of an elderly person and all i can say to anyone asking is "I have what Bruce Willis has". ..I'm happy to do any work for you and your subs on the FTD front (oooohhh no pun intented...oh that was bad. LOL). xo Chanel
The short answer, no. I have the APOE 4 gene and am very concerned about my future brain health, but what you just described didn't sound like it is worth the price of admission. I'd be curious to know the percentage of help diet, excercise and social benefits, as described in your 10 video series would be. I throughly enjoyed that series and look forword to more. I'm so grateful to have found your channel and you!
Thank you and I'm glad you are here too!
Look at Dr Dale Bredesen, MD. He's been researching Alzheimer's for 30 years and has hopeful info out
I lost my father to this hideous disease during the Co-vid "pandemic" . Thank you for the info ,channel and hope, tbh I am frightened beyond anything I've ever faced🥺 . my doctor discussed it with me testing and what treatment was available. I have general worker insurance and as you know coverage continues to evaporate and cost rises. In answer to your question.. not yet as at 60yrs. old bleeds and bruising are far easier than in my 20's-30's I don't want to increase that trend. again I know it's not easy producing these channels so a tip of my hat and a HUGE THANK YOU
Excellent explanation. What do you think of new 36 month data published in August?
I am apoe 4/4 😢. I would not take it with the high risk of hemorrhaging for only 5-6 months of benefits.
My neurologist is currently preparing ti do the spinal fluid test, to check for my 42-40 BETA Amyloid APOE.
Then depending on my results and levels. They would continue to move to administering Leqembi infusions.
I would love to be a patient that will be able to contribute to the program. Helping others benefit from successful medication.
Doctor Sullivan asks a tough question here. The FDA is not the end all. But while this seems to be great news, we may not know enough. And certainly, the cost is out of reality. But I can see, just as she says, that there are so many who need hope in regards to this disease that he demand is sure to be high. I really like the way this doctor looks at alot of issues around medications and neurological conditions.
What group of Doctors do I reach out to. I have family history. As well type 2 diabetes.Any information could be helpful.
Ask a local neuropsychologist or neurologist if thy are offering it.
@@icareforyourbrainwithdr.su7103 Thank you
I am Apoe 3/4 and have had MCI for several years and am 66. I can't take Aricept due to low HR. I feel Leqembi needs a lot more research. In my opinion it seems to only be "approved" so quickly for the $$ and would use up a lot of Medicare funds when it seems Medicare is struggling as it is. My understanding with a Secondary insurance is that it is to pay the remaining 20% for everything Medicare approves. I could see the Secondary premium rates increasing with expensive treatments. I am very hesitant to take anything "new" especially that has been fast-tracked. Look at what info is coming out about the adverse effects of the C*v*d injection. 😥
Yes I would take the drug after genetic testing to determine if in the higher risk category for brain hemorrage and/or edema. And would want to be monitored regularly for these effects. I learned a lot and you're a very good teacher. Alzeiheimer's runs in our family both maternal and paternal sides so paying close attention - I'm not showing signs yet.
I had an spontaneous SAH about 9 yrs ago. The cause was never determined. I would say "No" without more info.
Absolutely I would - when faced with the prospect of losing more and more function - 6 months is a good amount of time and it could be longer. Yes it is hope. Without it one will just continue to deteriorate
Public needs to push. Doctors are slow to pick up idea of early treatment. Studies over 18 mos may well show over 50% improvement. This is a huge jump in treatment for dementia compared to past. Only 5 % show edema or bleeding. Only 3% are symptomatic.
Researching more about lecanemab is something that seems interesting to me. Please, I would appreciate it if people who have mild Alzheimer's respond if they would agree to treatment with this drug to know their perspective. Since, as we know, it can give more months of life in the early phase of Alzheimer's.
The problem with this study, as seems to be the problem with all studies, is that they use relative numbers instead of absolute numbers. For example they say that there was a 27% improvement in rate of decline for the Leqembi group over the placebo group. Unfortunately, that is the relative number. The absolute number is .45% (half of 1%) slower decline than the placebo group. How do they arrive at that 27% number? The Leqembi group's decline was 1.21 over 18 months. The placebo group's decline was 1.66. That is a difference of .45. So, if you divide .45 by 1.66 you get 27%. Most people in the study had 0 decline over 18 months anyway. In reality no one would notice a difference of .45 in the progression of Alzheimer's disease. So are you willing to take a risk of brain swelling or brain bleeding, among other side affects, to get a .45 improvement over 18 months. Having said that, supposedly the level of Amyloid Plaque in the brain was reduced by 60% (I couldn't figure out if that is the relative number or absolute number ... I suspect relative). That sounds good, but no one knows what it means. In fact, there is disagreement on whether Amyloid Plaque causes Alzheimer's or if Alzheimer's cause the plaque. This drug or others like it may turn out to me a lifesaver over time and that is exciting. Unfortunately, taking this drug now will not change much. You should also know that the use of relative numbers is how many drugs (maybe most) get approval. For example Statin's were approved because they supposedly reduced your risk of a heart attack by 36% (Relative). The absolute number is 1%. I just wish the doctors and drug companies would be honest and give patients both the relative and absolute numbers. At least they could make informed decisions.
do you think this could help with cadasil?
I'm pretty sure CADASIL is a rule out condition, unfortunately.
I was approved for this drug. No one explained the “Black Box” warning to me. I found it myself and was surprised to see that the warnings apply to me.
I have had a brain bleed in the past, I have A-fib and take aspirin for that. The arteries in my entire body have been inflamed by a Vasculitis.
I have not had genetic testing.
I’m upset because I feel like my doctor pushed me for numbers (marketing)
liked subbed and shared
My mom is on it.
Had two doses so far.
And what is your experience?
What has your experience been?
I have had one dose. Felt like I had a head cold without the cold. Could not think without confusion for 2 days. Pretty much cleared up after day 3. I am not sure if I am going to continue. Feeling overwhelmed and emotional.
🇨🇦 yes
No thank you. Too risky. Too expensive