Infusions

Daryl G · July 26

My husband will have his first Leqembi infusion this week. What symptoms should I expect after the first treatment? Will he need to sleep the rest of the day? Will he be nauseated, have a headache, generally be "out of it" and how long will any of these symptoms last after the first infusion. Will these same side effects happen after the following infusions? Any information regarding these infusions would be greatly appreciated. Thank you so much, Daryl G

trottingalong · July 26

I have a friend who has had 3 infusions without any side effects whatsoever. Like everything else, some things just depend on the individual receiving the infusion. I would ask the doctor or someone at the infusion center what you should be looking for, if anything, when you take him home. Best of luck.

MaryMN · July 27

My DH completed 2 years of bi-weekly infusions and is now on a once-a-month maintenance dosage schedule. He experienced side effects (headache, body ache, chills) that lasted for the remainder of the day after his first infusion and never experienced them again. He is able to resume normal activity immediately after an infusion.

My only suggestion is to make sure your husband is well hydrated beforehand.

Call me Gram · July 27

https://alzconnected.org/discussion/comment/278422#Comment_278422

Mary,

Do you feel the time spent was worth the time gained?

We will be traveling about an hour's drive for DH's infusions, if he chooses to get them. DH stresses when we travel anywhere, especially when it's for his medical appointments. Will the stress of the travel be compensated by a noticeable delay in his decline? Has it stabilized your DH's dementia?

Any insight or experience from your perspective would be greatly appreciated.

Thanks,

Gram

MaryMN · July 29

https://alzconnected.org/discussion/comment/278442#Comment_278442

Gram,

The infusion center was less than fifteen minutes from our house so travel wasn’t a factor. I became really good at running errands in the 60 minute time frame of an infusion, lol. DH seemed to find the infusions relaxing…he read, answered emails, and even napped during them. Since they occur every 2 weeks, perhaps your husband will adjust to the routine.

It is impossible to know how much the infusions have delayed DH’s progression but he felt strongly that he wanted to do whatever it took to live a more normal life for as long as possible. He is still in the early/moderate stages.

Call me Gram · July 29

https://alzconnected.org/discussion/comment/278629#Comment_278629

Thank you!

EarlInCA · August 2

DW just completed her final donanemab infusion (#18). She never had even the inkling of a side effect. I have studied the clinical results in depth and understand the statistics. Unfortunately, it appears that her response is far below average. That said, it was an opportunity which we welcomed. Some will do better than average so my advice would be to try any available treatment.

Call me Gram · August 2

https://alzconnected.org/discussion/comment/278959#Comment_278959

Thank you! So sorry to hear that it was not as effective for your DW than hoped. Best wishes to you.

Dusty217 · August 2

My DH has completed 7 treatments. We are doing Leqembi. After the first treatment he had flu like symptoms Headache and tired being the majority. He was also tired the second day, but we had lunch plans with friends. He was wiped out by the end of the day. Since I don't schedule activities the day after but he has not been as worn out. He has had no other side effects like this. We have a 2 hour travel for the infusion but have found this to be tolerable. I did read the Leqembi was approved for SC injection at home, and can now be used early in treatment rather than just as maintenance. I do plan to have him switch to this as soon as approved by insurance. The only downside I need to add is ARIA. My DH with his 3rd MRI (after 6 treatments) showed some brain swelling. Since he is asymptomatic, he can continue treatment, but will need further MRIs. The question is it helping or slowing symptoms. I don't know. What I can say is my DH believes it will and has improved in how he sees the disease and his long-term prognosis. To me that is worth the time and travel.

Call me Gram · August 2

https://alzconnected.org/discussion/comment/278962#Comment_278962

Very helpful - thank you!

Infusions

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