Lithium vs lecanemab

Brien

I am new to the group. My wife has been diagnosed with MCI and likely ALZ. She will soon get an assessment for use of lecanemab. We are also looking at the promising data on lithium orotate. Mostly Li has been studied with animals, not much with humans. Yet it appears to be more promising than the auto immune drugs as far as actually reversing the illness. She is weighing the imposition infusions will make on her life style vs the very preliminary data on lithium. My wife is a health care professional and pretty good at making these decisions. We will gather more data but I am interested in how much folk’s life style has been compromised by infusions.

PJ52

Hi, Brien. I asked my husband’s doctor about lithium, but he said he wouldn’t recommend it because it hadn’t been tested in humans. I was disappointed, but our philosophy is find a doctor you trust and do what he says. 😊

My husband tried lecanemab infusions when he was first diagnosed over 2 years ago, but could not continue because of ARIA. Fortunately, he had no lingering effects from the small bleeds. His infusion center at Duke was a four hour round trip for us, so we rented an Airbnb there for the first month. I also felt more comfortable being close to the hospital while he underwent treatment. We’re retired, so there was no interference with our lifestyle. We continued with our usual activities (bike riding and paddling). Some waits at the clinic were longer than others because the drug has to be ordered from the pharmacy AFTER you check in so it can be used immediately after preparation. On busy days at a large hospital, the wait might be an hour or so before the infusion begins. So we could never predict how long we would be there. That was our experience, at least.

Brien

Thanks for this. I suppose it may be hard to know about the drugs benefit since you don’t know how your husband might have done without it. But you feel you made the right decision?

PJ52

Yes, even knowing he had higher risk of side effects because he has two copies of the APOE4 genetic marker. There is another drug, ALZ-801 by Alzheon, that we had hoped would be available by now, a pill with no side effects in the trials. But the FDA had them extend the trial specifically for those like my husband. They are still presenting their findings at conferences. It is not yet on the market. Very frustrating.

PJ52

If you haven’t done so, you can search this site for posts specifically about lecanemab.

Brien

Thanks. Very best to you and your husband!