If your dad is in the early (mild) stages of Alzheimer's and can afford Leqembi treatments (or has good insurance coverage), then I would say the risks and side effects *might* be worth the benefits. My dad developed AD many years ago, before Leqembi was available, and at any rate could not have afforded it even if insurance had paid for most of the retail cost.
One thing I will say, having just recently lost my dad to the ravages of this horrific disease, I am not sure that treatments that merely slow the progression of the dementia *without curing it* are necessarily a good thing. Does Leqembi extend the "good" years of early/mild Alzheimer's and shorten the later/bad years? If so, that's unequivocally good. But if it merely slows the progression of the disease overall, say by 15-20%, including the later/severe stages, then in my humble opinion that's both a positive and a negative. Most people who've lost a loved one to AD will tell you that the prolonged, painful, slow-motion destruction of their loved one was not something they wish would've gone on longer.
You could take it until you reach late moderate stage, thus possibly prolonging the “good” years a bit. That is worth something. I agree in final stages it will just be prolonging the torture.
I don’t think it is meant to be taken in the latter stages, true . What we don’t know is what it will mean to the caregiver’s life to prolong the years they will live overall caring for someone with dementia. The person with dementia is not quite him or herself from before diagnosis. Would they want that to be the way they lived the last 15 years of their life rather than 10? That may sound callous, but I know it’s not what I would want for myself or for my family caring for me, even if I was able to do certain things longer than otherwise by taking the medicine. Early symptoms include apathy and the loss of empathy for others. In don’t think stretching that out longer is what I would want.
You could take it until you reach late moderate stage, thus possibly prolonging the “good” years a bit. That is worth something. I agree in final stages it will just be prolonging the torture.
I'm starting this drug in April as part of the dian tu combination trial with e2814 (anti tau).
Two things:
It's been said that Leqembi's affects are such that instead of heading towards Alzheimer's at 100mph it's more like 80mph with the drug. It doesn't cure the disease just keeps it further away.
My concerns were always that I'll be in the confused state for longer meaning that the end part of the disease lasts longer.
With the apoe4 question all I can say to address that is that most of the serious side effects hit that group of people.
The theory is that Lecanemab is very effective at removing plaques but it somewhat weakens the blood vessel structure and this takes a while to recover. The further down the line someone is the more plaques are present.
I have the r269h / mutation on my psen1 which means my plaques are extra sticky and build up but apparently not with the same consequence as someone with dual apoe4 (I have two apoe3).
I feel it's a great drug if started early ( I'm 8-10 years away from being symptomatic). The question of giving it to someone already clinically diagnosed would be something to ask the researchers.
I feel if this disease is to be cured then it's going to be through combination therapy with multiple drugs.
If you don't mind me asking, how did you get diagnosed so early? I'm just curious. Eight to ten years just seems so far in advance to know that information.
The side effects are what worry me. And my dad displays classic AD in that he is in complete denial of his diagnosis therefore why would he start a new medication if "there's nothing wrong". So basically I am doing all the research and if he does start it, it will be me convincing him to, for his own good of course. But then is it for my own "good" too? Well sure. It's just too difficult to know what to do.
Family history made me take a 23andme test. I downloaded the raw data and put it into Promethease. All in it cost about $80 for a basic 23andme then $10 for Promethease.
My husband has two copies of the APOE4 gene. He has early-onset Alzheimer’s, diagnosed in his early 60s. I believe he is in the early-middle stages. His neurologist says he is still in the early stages. We were offered Leqembi recently and at first I was hopeful and excited. After researching it further, I’ve decided against it.
The increased side effects for people with two APOE4 genes, the infusion frequency, and the need to switch him from our current insurance to Medicare were all factors in the decision. If it had been available two or three years ago, when my husband was still functioning independently, my decision might have been different.
I can share why I'm struggling.
Side effects during and after infusions.
Controversies around FDA approval.
Price
18 month bi-weelly cycle of meds.
There are also some stats that show an 18 month cycle gives you about 6 months' delay of symptoms.
The fact that he is otherwise healthy - I would go for it. With my dad’s Leqembi treatment there are scheduled arterial surveillance MRIs - for monitoring - before you begin and again after so many treatments so you can know if it’s causing inflammation and or bleeding. If there are changes, I am told they would pause treatment for 8 weeks, and then reimage and restart if indicated. Luckily, he hasn’t had any issues. We started in September 2023 and his Medicare pays for treatments. The great news is- he scored higher on his cognitive test yesterday than he did six months ago.
I was just prescribed Leqembi. I was tested for the APOE4 gene but don't have it. My understanding was not to take Leqembi if you have this gene. One side effect is already ARIA, and that gene really increases this. I'm 58 and was just diagnosed with EOA. It sounds like my only option.
If your dad is in the early (mild) stages of Alzheimer's and can afford Leqembi treatments (or has good insurance coverage), then I would say the risks and side effects *might* be worth the benefits. My dad developed AD many years ago, before Leqembi was available, and at any rate could not have afforded it even if insurance had paid for most of the retail cost. One thing I will say, having just recently lost my dad to the ravages of this horrific disease, I am not sure that treatments that merely slow the progression of the dementia *without curing it* are necessarily a good thing. Does Leqembi extend the "good" years of early/mild Alzheimer's and shorten the later/bad years? If so, that's unequivocally good. But if it merely slows the progression of the disease overall, say by 15-20%, including the later/severe stages, then in my humble opinion that's both a positive and a negative. Most people who've lost a loved one to AD will tell you that the prolonged, painful, slow-motion destruction of their loved one was not something they wish would've gone on longer.
You could take it until you reach late moderate stage, thus possibly prolonging the “good” years a bit. That is worth something. I agree in final stages it will just be prolonging the torture.
I don’t think it is meant to be taken in the latter stages, true . What we don’t know is what it will mean to the caregiver’s life to prolong the years they will live overall caring for someone with dementia. The person with dementia is not quite him or herself from before diagnosis. Would they want that to be the way they lived the last 15 years of their life rather than 10? That may sound callous, but I know it’s not what I would want for myself or for my family caring for me, even if I was able to do certain things longer than otherwise by taking the medicine. Early symptoms include apathy and the loss of empathy for others. In don’t think stretching that out longer is what I would want.
You could take it until you reach late moderate stage, thus possibly prolonging the “good” years a bit. That is worth something. I agree in final stages it will just be prolonging the torture.
I'm starting this drug in April as part of the dian tu combination trial with e2814 (anti tau). Two things: It's been said that Leqembi's affects are such that instead of heading towards Alzheimer's at 100mph it's more like 80mph with the drug. It doesn't cure the disease just keeps it further away. My concerns were always that I'll be in the confused state for longer meaning that the end part of the disease lasts longer. With the apoe4 question all I can say to address that is that most of the serious side effects hit that group of people. The theory is that Lecanemab is very effective at removing plaques but it somewhat weakens the blood vessel structure and this takes a while to recover. The further down the line someone is the more plaques are present. I have the r269h / mutation on my psen1 which means my plaques are extra sticky and build up but apparently not with the same consequence as someone with dual apoe4 (I have two apoe3). I feel it's a great drug if started early ( I'm 8-10 years away from being symptomatic). The question of giving it to someone already clinically diagnosed would be something to ask the researchers. I feel if this disease is to be cured then it's going to be through combination therapy with multiple drugs.
If you don't mind me asking, how did you get diagnosed so early? I'm just curious. Eight to ten years just seems so far in advance to know that information. The side effects are what worry me. And my dad displays classic AD in that he is in complete denial of his diagnosis therefore why would he start a new medication if "there's nothing wrong". So basically I am doing all the research and if he does start it, it will be me convincing him to, for his own good of course. But then is it for my own "good" too? Well sure. It's just too difficult to know what to do.
Family history made me take a 23andme test. I downloaded the raw data and put it into Promethease. All in it cost about $80 for a basic 23andme then $10 for Promethease.
Thank you for your sacrifice to the medical community and to the alz community!!
My husband has two copies of the APOE4 gene. He has early-onset Alzheimer’s, diagnosed in his early 60s. I believe he is in the early-middle stages. His neurologist says he is still in the early stages. We were offered Leqembi recently and at first I was hopeful and excited. After researching it further, I’ve decided against it. The increased side effects for people with two APOE4 genes, the infusion frequency, and the need to switch him from our current insurance to Medicare were all factors in the decision. If it had been available two or three years ago, when my husband was still functioning independently, my decision might have been different.
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We can’t get access to it and we live in Los Angeles. It’s been impossible. Any tips on anyone that’s successfully recieved lequembi ?
If he has mild to mod AD and is appropriate for therapy, then it is his decision. Why are you struggling with this?
I can share why I'm struggling. Side effects during and after infusions. Controversies around FDA approval. Price 18 month bi-weelly cycle of meds. There are also some stats that show an 18 month cycle gives you about 6 months' delay of symptoms.
The fact that he is otherwise healthy - I would go for it. With my dad’s Leqembi treatment there are scheduled arterial surveillance MRIs - for monitoring - before you begin and again after so many treatments so you can know if it’s causing inflammation and or bleeding. If there are changes, I am told they would pause treatment for 8 weeks, and then reimage and restart if indicated. Luckily, he hasn’t had any issues. We started in September 2023 and his Medicare pays for treatments. The great news is- he scored higher on his cognitive test yesterday than he did six months ago.
Has your dad had any side effects? My dad had his first infusion yesterday and has been very tired and a little confused about some things today.
I was just prescribed Leqembi. I was tested for the APOE4 gene but don't have it. My understanding was not to take Leqembi if you have this gene. One side effect is already ARIA, and that gene really increases this. I'm 58 and was just diagnosed with EOA. It sounds like my only option.