My husband was diagnosed with mild cognitive impairment due to AD six months ago. He is APOE4, likely to risk the most side effects with Leqembi. We’ve been in conversations with neurologists and doing research on our own. Whether or not to start Leqembi will be a very tough decision.
My husband has a different rare disease that recently required infusions once a month for six months. We learned a lot from that experience. Though his medications had no negative side effects, getting regular infusions was physically and emotionally difficult. His veins developed scar tissue after only four infusions making it increasingly difficult and painful to find the vein. Each infusion took over 2 hours (plus drive time and wait time) requiring doses of steroids and Benedryl to ease reactions to the drugs. We understand these extra measures are common for patients on Leqembi too. The thing that kept us going was measurable, positive results. Blood tests showed us exactly when he went into remission.
Now, faced with the decision about Leqembi, it’s very hard for us to imagine eighteen months of infusions every 2 weeks, plus several MRI scans, and the risk of dangerous side effects - with no measurable results. The studies show the median amount of time Leqembi slows AD is six months, but there’s no way to detect or measure results for any one individual. He won’t feel any better. The AD will still progress. Even if they could guarantee my husband the extra six months, we’d pay for those months with eighteen hard ones.
My husband is extremely physically fit. His AD symptoms are very mild. We want to guard his quality of life now, while he’s at his best and can enjoy it.