Leqembi: Anyone else taking this infusion to slow dementia?

I had been aware he had issues. He was diagnosed with Alzheimer's in 2018. He will have his 13th Leqembi infusion in about a week. His cognitive level drops have definitely slowed. I am waiting to see what occurs when he completes the infusion. He will also get an MRI then

@trustinghim4u Welcome to Mayo Clinic Connect! I see you’ve been on Connect for a few months and decided that you should just go ahead and post something. You mentioned ’he’; is that your husband that you are being a caregiver for? Maybe you could tell us a little more about yourselves. How long have you been a caregiver? Is everything going smoothly? Are there any problems that the members can help you with?
What support do you have for your caregiving?

This is very interesting. I don’t know anyone who has taken this medication. It sounds like it has had some impact so far. Do you know how the MRI results confirm change? Best wishes moving forward.

The medication is doing what it is intended to do. It buys time. My days are full. He helps in ways he can. Even with housecleaning. He is the same kind of man he always was. Kind and loving. I do try to have a day here and there when I have an hour or so.

My husband is in year four since his diagnosis of AD. He has been on Lequembi for 18+ months. He has had no notable side effects. Once or twice he had a light headache two days after which may, or may not, have been due to the infusions. We report it anyway.
His neurologist is impressed with how well my husband is doing with the very slow progression. (I agree.) my husband is still in the mild cognitive impairment stage.
His neurologist said almost all of his 40 patients have been seeing positive results.
We know it won’t go on indefinitely but we are very fortunate to have gained this valuable time.
Best of luck!!

Hi @allit, you may also be interested in this related discussion:

- Caregivers: Early Onset Alzheimer's, diagnosis age 19 to 65 https://connect.mayoclinic.org/discussion/caregivers-early-onset-alzheimers-diagnosis-age-19-to-65/

How are you and your wife doing?

Welcome @trustinghim4u. I moved your posts to this existing discussion to connect with others talking about Alzheimer's and Leqembi

- Leqembi: Anyone else taking this infusion to slow dementia?
https://connect.mayoclinic.org/discussion/leqembi/
You may also be interested in following the discussions in the Caregivers: Dementia support group here: https://connect.mayoclinic.org/group/caregivers-dementia/

MRIs are performed to monitor the medications’ side effects, not the progression of the disease.

Thanks for the suggestion.

She’s had two infusions so far. As far as we can tell she’s doing ok. She’s having some side effects from rivastigmine so it’s hard to tell if some of the things she’s experiencing is from that or the infusion. It’ll be good to get the MRI results after the fourth infusion to make sure everything is ok.

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.