Leqembi Infusions
My husband is in early stage Alzheimers and our Neurologist recommended Leqembi. After much discussion my husband decided he wanted to try it even withe the serious side effects. After 3 infusions they did an MRI to look for side effects (brain bleeds). All was good. After the 5th infusion they repeated the MRI and it showed micro bleeds. Dr stopped the infusions for a month, he is getting another MRI this Friday and if those micro bleeds are healed he will restart the infusions next week. My question is… has anyone had a similar situation. Also if he got them once, aren’t they likely to come back again? We have a dr’s appt tomorrow morning and I have lots of questions for him.
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Hello … we are in the process of trying to get approved for the infusions for my EOAD DH. Did your Significant Othere have ablood test to identify if they are an APOE4
APOE4 is a gene variant strongly associated with an increased risk of late-onset Alzheimer's disease and other dementias
carrier which is more prone to having side effects/brain bleeds? If not I would request it. it doesn't mean it won't happen, but the risk is shown to be lower. that was the deciding facator for us it getting the infusions or not. However, we are navigating this without Medicare/Medicaid which is chllenging. Private Insurnace does not lik eot say 'yes' to much👽️
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This is not really an answer ti your question …just a comment. DH's neurologist has been pushing hard for DH (age 90) to start the infusions, even though he told us that the upper age for the infusions is 88. Like you I had read all the warnings and side effects. We decided against it and brain micro bleeds was one of the reasons. I will interested in following how your LO does.
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Be careful with infusions. Keep in mind that they only slow progression for a few months. Is there really any value in that? They do not offer cure or improvement. Seizures and confusion can occur. Consider logically, if micro bleeds occurred once it seems likely to occur again.
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My husband is in the early stages of EO and is 60 years old. He has been tested for the APOE4 gene and also had lots of MRI's to check for brain bleeds. All seems good. He has been getting these infusions since February 2025. (almost 8 months) He is much worse than 8 months ago. I wonder how he would have progressed with out the infusions. I feel like what is the point? Unless they come up with an actual cure, the infusions just prolong the inevitable outcome.4
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My husband is 73 and just finished 18 months of bimonthly infusions and has had one monthly. After the bimonthly infusions, they are prescribed monthly. The Neurologist said that he would decline much quicker without the monthly infusion to keep the drug in his system. He still declined during this period of infusions. I guess not as quickly though, if he had not had the infusions. I agree with Christina, just prolonging the inevitable outcome. He had no brain bleeds.
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My DH (57) has been doing Leqembi infusions now for a few months. The first two rounds were rough on him with flu like symptoms that lasted several days. Since then it’s been okay. No bleeds, but I think if he did have any we would make the decision to stop the infusions.
As others have said, there’s no improvement so do him the medicine is more about giving him a feeling of hope (he hopes he’ll have time for them to come up with a cure).
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my DH ((57) started infusions last spring, after 2 infusions he had to stop given what they saw on the MRI. He is high risk for brain bleed given he has two APOE4 gene. He’s finished his 5th infusion last month and has an MRI coming up. I’m not sure the treatment is helping.
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ok, I’m never shy about giving my 2 cents which is about all this is worth. I would not take a chance with a therapy that is known to cause brain bleeds and has absolutely zero chance of curing the illness and an unproven record of even slowing it down. I have a friend who lost his wife to this dreaded disease. He was helping me deal with my DW and he said something I found profound. He said if he had it to do all over again he wouldn’t give her any of the meds for slowing it down. It just prolongs the LO’s and the caregiver’s agony. I didn’t subscribe but I appreciated the perspective.
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I have to agree.
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DW and I decided not to pursue the new infusion medications for the reasons discussed. However I have great appreciation for those people who do choose to use these medications. I believe the infusions are considered to be the first disease altering treatment for ALZ. The science could not be advanced without the contributions of such people.
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I am a 60 yo retired physician diagnosed in June with early onset Alzheimer's. As for APOE4 I am heterozygous which means I have the variant on 1 chromosome but not both. This does present an increased risk but not as much as with both chromosomes having the gene. I was diagnosed at the University of Pennsylvania and had a long discussion with one of the top researchers in the field. Their research indicates an aproximate 25% increased time of progression from Mild to Moderate Dementia. I agree it is not the right treatment for all and as with anything we all have to determine our own level of risk. What I will say, I am having my second treatment MRI tomorrow morning prior to infusion number 7. I have been fortunate to have had minimal side effects with the treatment inclusive of slight fatigue and mid nausea after the infusion lasting for the rest of the day. Otherwise I have been fortunate to have avoided other issues. I made my decision based on my younger age and hopes to gain some increased quality time with better functionality. I know it is not a cure but I will say at this point if I was to have a positive scan, I would restart once cleared and continue monitoring. That is a personal decision that my wife and I have determined as a team. As long as I continue in the Mild Cognitive Impairment Level of the disease I want to continue this treatment in the hopes of improved therapy in the future. When my quality of life declines I will or my wife will for me reassess the options and most likely at that time stop treatment. I hope your apt with his provider was helpful in answering your concerns.
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True.
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I am always interested in your contributions to this forum. As a person going through this yourself, what you provide to us is immeasurable. Thank you.
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sorry I’ve been absent for awhile. My DH Neurologist convinced us to continue the Leqembi infusions after his MRI showed the microbleeds were gone. He will have his 12th next week followed by an MRI the next week. In the past 3 weeks I have noticed a decline in his physical health. He is having a lot of weakness in his legs and his knees are really bothering him. He is blaming it on the cold weather and his arthritis, which it very well could be. His memory doesn’t seem to be too much worse but confusion has increased. My gut is telling me that these are reactions to the Leqembi. The MRI can’t get here soon enough.
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Thank you for this update. I have been wondering how you both were holding up under this regiment. Here is hoping the MRI brings you some much needed good news.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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