Leqembi: Anyone else taking this infusion to slow dementia?

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When I was diagnosed with dementia they pushed for me to have those infusions.
I turned it down because it didn’t cure dementia. If the drug companies came up with a drug that cures, I would be first on line.
My neurologists haven’t been able to give an exact diagnosis yet. My feelings have changed about needing to know what form of dementia I have.
None of them is curable, so why does it matter?

I’ll just eat my ice cream, and not worry about it anymore.

I am sorry to hear that you wife had such a reaction to Leqembi. It must have been a relief after the MRI showed all was well with taking the drug. I am not sure how I would feel if he had to discontinue his treatment. It has definitely given us some hope, even if it is just a glimmer... My husband is having his 4th infusion this coming week and is scheduled for an MRI after that treatment. It is standard procedure to check for brain bleeds as you know. I have noticed that for about a week after the hour-long infusion he seems more himself. I am not sure if this is what others are experiencing? Have you noticed any changes in your spouse?
Thank you for the info you posted, it might help someone else.

Hello, I am devouring all your communication, as I am at the crossroads of deciding which of the two drugs I should sign up for. I am 68 and have been diagnosed with MCI. I have one APOE3 gene and one APOE4 🙁 I have read about the side effects and have concerns; I have a part time job which I love and I don't want to give it up yet. The job is having me lean toward Kisunla, as the infusions are every 4 weeks, where the Leqembi is every 2 weeks. The side effects are an important consideration. I have also read the research, and it seems Kisunla is more effective, though side effects are greater.

My husband has received 32 Leqembi infusions. When he was diagnosed and fought the battle of being accepted as a good candidate to receive the drug and then finding a local Dr to oversee the administration of it, kisunla was not an option. He also has one APOE 3 and one APOE 4. His first infusion was the worst as he had a lot of side effects. We have since learned how to manage the drug and now he might get colder the normal the evening after his infusion and usually a little tired that evening and the next day. We are happy with the decision that we made to seek out treatment, we feel we are helping to fight this awful disease. Best of luck to you 🙏

My husband has had 4 kisunla infusions, no side effects ever. He is due for one in 3 days and I think he is acting more confused than normal. It is so hard to tell if there is any improvement but I hope that now I notice he’s more confused I will pay attention to after infusion. He doesn’t have a pet scan until July when we will see if there is any improvement in the plaques. Crossing fingers . It’s a tough road but I’d rather be doing n something than nothing.

Put my reply to this note on the wrong one. See the reply to the one below. Maybe i need infusions. Trying to keep my sense of humor

Wow, 31 infusions, you were definitely an early adopter for this medication. Looking back, are you happy with the results...slowing of the memory deterioration. My wife is getting ready for infusion #3 (Leqembi) and we are hoping for as much positive time as possible. We have also accepted that our generation is a guinea pig for the future of Alzheimer's treatment. Hopefully we will find benefit, if not, hopefully we are helping our children and grandchildren's generation.

It's so hard to say what would have happened without the infusions. We will receive a second PET scan in August and compare with the first one before the infusions and see what may have changed. Yes, we are the guinea pigs, but at least science is doing something to help this awful disease.

My husband has been on Leqembi for 10 months and we are happy with the results. He has had none of the side effects, and his memory has not gotten any worse, in fact, if anything is a bit better. The negatives are not with the drug itself, but it’s with the process and procedure.
Transportation takes an hour.
After my husband is seated and set up for the infusion , he has an hour wait time before the drug arrives. They will not mix it before he is there, as it is expensive and custom mixed for his weight.
The infusion takes a full hour. The total process takes four hours out of the day. The room and the chair is comfortable, there is a TV and a very friendly staff. They even offer snacks and water.
We caught the flu from the Mayo Clinic in December, and three weeks ago, we got Covid. We wear masks except for when we are in the infusion room. We could not have caught these things elsewhere because there was no other place we went where we were with other people either week. The elevators are the worst place for catching diseases. This last time, I would not even go in with him, but stayed in the car. Otherwise, please take precautions if especially if you have a compromised immune system. (The Mayo Clinic is full of a lot of sick people.🤪)
You cannot travel further than 100 miles away, and you have to plan every activity around the infusion.
All in all, it is well worth it because I have not seen the deterioration that other people have seen.
We were advised for my husband to take the four hour driving test to see if he could still drive, and after months of waiting for the appointment, he was certified to drive last Monday. Our life is getting a bit easier. The drug works.