Leqembi Concerns

cavenson

I have read the posts on "The Problem with Leqembi" and recognize that it's no silver bullet. However, my DH with ES read in the newspaper about its FDA approval and wants to try it. He asked me to make an appointment with his neurologist next week. Background: DH is 84 this month. He was first evaluated in 2018 and received a diagnosis of MCI. That was changed to ES about 1 1/2 yrs. ago. His most recent thorough testing was late January, and he still tested ES--scores on some things up & some down--though he was having a good day.

In March, he participated in a REPHRASE study, which is seeking to determine if Alzheimer's can be detected by an image of the retina. As part of the study, he received a PET scan and MRI of his head to detect the presence of amyloid plaques. Three radiologists determined that he did have amyloid plaques and gave the diagnosis of Alzheimer's. Following this, we met with a neurologist at the medical school who told us he would probably qualify for a research study using Aducanumab. However, he would have a 35% chance of receiving a placebo. He was also at the top end of the age for being in the study. To insure receiving a drug instead of a placebo, the cost would be $27,000. Since my DH was recently diagnosed with high blood pressure and was prescribed bp medicine plus baby aspirin, I asked if that might make him more to prone to brain bleeds. I was told it wouldn't, but I'm skeptical of that answer. After reviewing the potential risks, we decided against seeking to be in that study.

However, now Leqembi is approved by Medicare. My DH is already in a registry through the Medical School and does have amyloid plaque in his brain. There are safety concerns with Leqembi, and the benefits are questionable. So, I'm trying to decide whether I should encourage him. Any thoughts you have would be appreciated.

And, I am so thankful for this discussion board. The first-hand knowledge shared is so helpful, and the compassion shown is awesome.

mrspgee

Hello Cavenson, my LO has a similar set of circumstances. He was scheduled to start the Leqembi infusions in mid-Sept. He wants the treatment and it was all set to start. The more I read and listened to opinions, the more uncomfortable I felt with the decision. We are scheduled to meet with his neurologist in three weeks. He has been approved for the infusions after the required PET, blood, MOCA tests, etc. I am making the decision for him since he doesn't understand most of what is explained to him and I am very distressed about making the wrong decision for him. I also know that there is no silver bullet, no clear answers, everyone is different in the trajectory of the disease. There are no easy answers. I suspect that after our meeting with the doctor we will reschedule the treatment. Maybe that's buying time until the next best becomes available. How much time are we buying? The amyloid plaque will eventually continue to spread. I'd like to understand how much time we are buying. As you know, there will be at least seven months of infusions, every two weeks in addition to numerous PET scans and blood work along the way. I don't want to have him spend seven months going through a grueling treatment when the benefit may be very short lived. Then, there are the side effects. Of course, these are questions I will address with his neurologist again. Any thoughts you may want to share will be really appreciated. I'm dealing with everything at home and the decision is mostly my own. His three adult children have no interest in becoming involved. At this point it may be a good thing. I am 76, he is 81. We have been married for 34 years. He was given the diagnosis of MCI six years ago. I feel your pain.

My best to you and your husband.

LB1948

https://alzconnected.org/discussion/comment/221422#Comment_221422

LB1948

I am in a similar situation. I am 77 and my DH is turning 84 next month. He started forgetting things about 2 years ago. Long story short he has MCI. It took 7 months to get into the neurologist. We have been presented the option of Lequembi. It is a soul-searching decision. Are the benefits worth the risk. He really cannot make the decision as he has no clear realization of the process even though I explain procedure of the 18-month injections and the MRI's required. One minute he wants to do it and the next he doesn't. Two of his children think he should get the further testing to start the meds. One thinks he should not and so do I. He had an MRI several months back and came out shaking and a wreck saying he never wants to have another. Not sure I should have him go through all of this. He is happy now and enjoying life. Such a stressful decision. What was your decisionn?

cavenson

https://alzconnected.org/discussion/comment/237644#Comment_237644

It's been a little over a year and a half since I posted trying to decide if Lequembi was a good option. It was almost a year ago that we met with the neurologist and research director at the medical school following DH's yearly evaluation. The neurologist spent some time trying to convince DH to begin Lequembi injections. He said the medical school already had 20 Alzheimer's patients using Lequembi. He asked my husband what he liked to do, and when he said he liked to cook, the neurologist pointed out that by taking Lequembi, he would probably be able to do this for six months longer. In trying to convince us, the neurologist said DH's age (85) wasn't a problem and that he was still early stage. I wasn't convinced—thought they were just seeking more Alzheimer's patients on Lequembi, and a potential six more months of reduced decline just didn't seem worth the risks. DH is still declining at a slow rate—still has no problem cooking his breakfast and sometimes another meal and still handles ADLs OK. His speech has declined—sometimes searches for words; sometimes confabulates and exhibits other signs of AD. While we never can know for sure, I don't think his abilities would be better if he had gone on Lequembi, and there are the risks of brain bleeds plus the inconvenience and stress that would come with the regular infusions. I wish you peace as you decide what is best for your DH.