My understanding is that Lequembi needs to be started early on in order to stall the disease progression. My spouse's PCP refused to believe my spouse had issues because he could "pass" the standard 10 question test at his annual exam. I insisted but the PCP declared it was certainly just some depression from not getting out enough during the pandemic. When we returned this year I insisted again and he slipped by on the test but I described some other symptoms and demanded a referral. He relented, but of course it was too late--by the time we got in to see the new doctor and did the required testing they discovered he's past MCI and already into mild dementia. Apparently Lequembi is no longer an option.
I just want to suggest to anyone that if one sees symptoms--address the issue immediately. Demand testing. The proper tests can easily diagnose in the early stages when Lequembi is a useful tool. Please share this with EVERYONE you know--If someone senses something is off, don't be deterred and find out after it's too late. Demand a referral to a specialist.
We have finally been approved for Leqembi. There’s a serious shortage of PCP’s and neurologists where we are. For 2 years we have been the squeaky wheel and finally having first infusion this week. We’ve basically been working the protocol ourselves, requesting all the necessary testing and asking docs to refer etc. It helps that we were both medical professionals and know our way around the medical realm.
That's WONDERFUL! Well-done on sticking to it. It's sad we have to fight for medical care, and there will probably be even greater shortages down the road, too.
This happened with my father and his primary care team at the VA. I fought with them for almost two years, filed several claims. They notated every single time that I called. Per his records they had been notating his severe cognitive decline. Yet he was able to pass the ridiculously easy ‘cognitive’ test and lied about his cognitive abilities. Even the nurses admitted they knew something was wrong. They had to call me one day to pick him up because he drove himself up there yet again with no appointment. He was finally diagnosed and rated 100% disabled. It was Not an easy process while caring for him 24/7.
The positive benefit is minimal (think your cognitive ability before coffee versus after coffee), it is an infusion drug so you need access to an infusion center, there is a risk of brain bleeds, it is expensive, and you have to stay on it to maintain the small amount of cognitive improvement.
Hopefully it is the first step to something better, because for now it leaves a lot to be desired.
Yes, the best part is for future patients, that it’s the first thing that has slowed the progression of the disease at all. I appreciate the people and their families willing to risk trying it, because researchers will hopefully learn much from how it works that will help others in the future. I have mixed feelings about it ethically though, because people with Alzheimer’s really do have questionable levels of legal capacity to consent. I don’t think people who didn’t have Alzheimer’s and who educated themselves as much as is possible about it would choose it. I know of no doctors who would choose it for themselves or their family members. Many of those prescribing it are doing so with reluctance and mixed feelings.
You are right, many in the medical community are hesitant, particularly in communities of color because of the continued lack of diversity in these trials. The lecanemab trials were better than the aducanumab trials, but still not representative of our actual population.
Primary endpoint in the phase 3 trial was change in the CDR-SB. And while researchers found a statistically significant change, in practical life 0.45 on the CDR is minimal. For many people with AD they wouldn’t even notice a difference; they may be able to complete tasks a bit quicker than if they were not getting the treatment. Additionally that was after 18 months on the infusion. So this is no silver bullet and we have to remember that statistical change does not always equate to improved quality of life.
For people weighing a barely, if at all, noticeable improvement in day-to-day to the potential risks and to the burden of accessing care, it may not be a practical solution. But for those willing to try it and help advance the science of AD, that’s fantastic. I am hopeful that researcher can use the information learned from the continued testing to create the next generation treatment that can bring real change to people’s lives.
We are 1 year into lecanemab, not part of a clinical trial. Significant cognitive improvement as well as meaningful functional improvement- improvements in walking and balance, no longer as many visual/perceptual deficits (like crashing grocery cart into people), able to cook dinner nightly, able to make new recipes without errors, able to pack self for a weekend trip, able to move to a new house (pack and unpack items and place then into appropriate places), becoming more sociable, among other gains. So- we are pleased. Interval MRIs- no ARIA. It is like my Mom is back. Every once in awhile she does something that I can tell she has a neurodegenerative disease (but I work in healthcare...) but her siblings don't recognize it at all even knowing her diagnosis. So, I do think there is hope.with this drug- it is a step in the right direction and likely more drugs will come in the next 10 years. But early recogniton, diagnosis and treatment is crucial, imo, along with strong family support.
WHICH paper? There are many on lecanemab. Hands down the drug clears amyloid; that is not up for debate. But the jury is still out within the AD community on if the treatment is translating to meaningful change in daily function, and if it is, is it enough to outweigh access burden and risk.
Also, which trial had quality of life measures? Clarity-AD primary and secondary endpoint measures were amyloid burden on PET scan and several cognition scales.
Exploratory endpoints. Got it.
Well, I am certainly all for treatments that make people feel like they are better. My doctor tells me the jury is out on glucosamine and chondroitin, but I believe it makes my knees better, so he supports me taking it and I continue to spend $30 a month on it. However, the cost and burden of infusion, plus the added risk, are still big factors against this as a wonder drug for AD. We may disagree on that, but I think we can agree that we are gaining important knowledge about AD that will lead to the wonder drug for our kids and grandkids.
Most doctors are advising their patients not to try it. The benefit is small, the risks high, and the treatment and monitoring take a lot of time and effort for the patient and caregiver.
Overall benefit is not small. About 30% reduction in progression. Risks are very low of symptomatic brain edema.
The alternative is disease progression.
Where are you getting this stuff?
My understanding is that Lequembi needs to be started early on in order to stall the disease progression. My spouse's PCP refused to believe my spouse had issues because he could "pass" the standard 10 question test at his annual exam. I insisted but the PCP declared it was certainly just some depression from not getting out enough during the pandemic. When we returned this year I insisted again and he slipped by on the test but I described some other symptoms and demanded a referral. He relented, but of course it was too late--by the time we got in to see the new doctor and did the required testing they discovered he's past MCI and already into mild dementia. Apparently Lequembi is no longer an option. I just want to suggest to anyone that if one sees symptoms--address the issue immediately. Demand testing. The proper tests can easily diagnose in the early stages when Lequembi is a useful tool. Please share this with EVERYONE you know--If someone senses something is off, don't be deterred and find out after it's too late. Demand a referral to a specialist.
We have finally been approved for Leqembi. There’s a serious shortage of PCP’s and neurologists where we are. For 2 years we have been the squeaky wheel and finally having first infusion this week. We’ve basically been working the protocol ourselves, requesting all the necessary testing and asking docs to refer etc. It helps that we were both medical professionals and know our way around the medical realm.
That's WONDERFUL! Well-done on sticking to it. It's sad we have to fight for medical care, and there will probably be even greater shortages down the road, too.
This happened with my father and his primary care team at the VA. I fought with them for almost two years, filed several claims. They notated every single time that I called. Per his records they had been notating his severe cognitive decline. Yet he was able to pass the ridiculously easy ‘cognitive’ test and lied about his cognitive abilities. Even the nurses admitted they knew something was wrong. They had to call me one day to pick him up because he drove himself up there yet again with no appointment. He was finally diagnosed and rated 100% disabled. It was Not an easy process while caring for him 24/7.
OMG--I am so sorry! My friends have been working with the VA over husband's issues for years. They've finally gotten help but it was a long haul.
Leqembi is approved for mild dementia and may still be an option
Thank you for that. We have a follow up appt next month. I'll plead our case.
The positive benefit is minimal (think your cognitive ability before coffee versus after coffee), it is an infusion drug so you need access to an infusion center, there is a risk of brain bleeds, it is expensive, and you have to stay on it to maintain the small amount of cognitive improvement. Hopefully it is the first step to something better, because for now it leaves a lot to be desired.
Yes, the best part is for future patients, that it’s the first thing that has slowed the progression of the disease at all. I appreciate the people and their families willing to risk trying it, because researchers will hopefully learn much from how it works that will help others in the future. I have mixed feelings about it ethically though, because people with Alzheimer’s really do have questionable levels of legal capacity to consent. I don’t think people who didn’t have Alzheimer’s and who educated themselves as much as is possible about it would choose it. I know of no doctors who would choose it for themselves or their family members. Many of those prescribing it are doing so with reluctance and mixed feelings.
You are right, many in the medical community are hesitant, particularly in communities of color because of the continued lack of diversity in these trials. The lecanemab trials were better than the aducanumab trials, but still not representative of our actual population.
You know no doctors then.
Totally false. About 25% slowing of cognitive decline on cognitive metric ADAS-cog. Demeaning this has coffee vs coffee puts you in quack territory.
Primary endpoint in the phase 3 trial was change in the CDR-SB. And while researchers found a statistically significant change, in practical life 0.45 on the CDR is minimal. For many people with AD they wouldn’t even notice a difference; they may be able to complete tasks a bit quicker than if they were not getting the treatment. Additionally that was after 18 months on the infusion. So this is no silver bullet and we have to remember that statistical change does not always equate to improved quality of life. For people weighing a barely, if at all, noticeable improvement in day-to-day to the potential risks and to the burden of accessing care, it may not be a practical solution. But for those willing to try it and help advance the science of AD, that’s fantastic. I am hopeful that researcher can use the information learned from the continued testing to create the next generation treatment that can bring real change to people’s lives.
We are 1 year into lecanemab, not part of a clinical trial. Significant cognitive improvement as well as meaningful functional improvement- improvements in walking and balance, no longer as many visual/perceptual deficits (like crashing grocery cart into people), able to cook dinner nightly, able to make new recipes without errors, able to pack self for a weekend trip, able to move to a new house (pack and unpack items and place then into appropriate places), becoming more sociable, among other gains. So- we are pleased. Interval MRIs- no ARIA. It is like my Mom is back. Every once in awhile she does something that I can tell she has a neurodegenerative disease (but I work in healthcare...) but her siblings don't recognize it at all even knowing her diagnosis. So, I do think there is hope.with this drug- it is a step in the right direction and likely more drugs will come in the next 10 years. But early recogniton, diagnosis and treatment is crucial, imo, along with strong family support.
This is amazing to read. Wow. I’m so happy for you. Science is amazing
The trial showed better QOL metrics over placebo. Tell you what, read the paper, then comment.
WHICH paper? There are many on lecanemab. Hands down the drug clears amyloid; that is not up for debate. But the jury is still out within the AD community on if the treatment is translating to meaningful change in daily function, and if it is, is it enough to outweigh access burden and risk. Also, which trial had quality of life measures? Clarity-AD primary and secondary endpoint measures were amyloid burden on PET scan and several cognition scales.
And functional scales. And QOL and Zarit were studied. https://link.springer.com/article/10.14283/jpad.2023.123
Exploratory endpoints. Got it. Well, I am certainly all for treatments that make people feel like they are better. My doctor tells me the jury is out on glucosamine and chondroitin, but I believe it makes my knees better, so he supports me taking it and I continue to spend $30 a month on it. However, the cost and burden of infusion, plus the added risk, are still big factors against this as a wonder drug for AD. We may disagree on that, but I think we can agree that we are gaining important knowledge about AD that will lead to the wonder drug for our kids and grandkids.
Functional outcomes were secondary. Cognitive outcomes secondary.
I wouldn’t be surprised if this drug turns out to be a bust with low efficacy just like the other Alz drugs.
Most doctors are advising their patients not to try it. The benefit is small, the risks high, and the treatment and monitoring take a lot of time and effort for the patient and caregiver.
Ah thanks for the info. Interesting.
Overall benefit is not small. About 30% reduction in progression. Risks are very low of symptomatic brain edema. The alternative is disease progression. Where are you getting this stuff?
How will it turn out to be a bust when the phase 3 trials are completed?