Just starting infusions

martyd101 · November 3

My husband has early stage Alz and is seeing a Dr. to hopefully begin the Kisunla™ (donanemab-azbt) infusions. Can anyone share their experiences with this treatment? side effects - anything we should know about the experience - etc.

dubiedeb · November 3

My husband also has early stage Alzheimer’s. We just started the insurance approval process for the infusion. He is having an MRI tomorrow and we’re waiting to be scheduled for the pet scan. His bloodwork shows that he has 2 copies of the gene that makes him at a higher risk of ARIA from the Kisunla™ (donanemab-azbt) infusions but he is willing to accept that risk. Does your husband have that gene? I will be following this thread looking for feedback from others currently getting the infusion as well. I wish you and your husband all the best, and best wishes to everyone in this group.

mbald · November 5

My husband has early onset (stage 3, 57 years old) and started donanemab infusions last spring. After two, we had to pause given MRI findings and then he started again. The monthly MRI’s stopped and he just had one after his 7th infusion and we are awaiting results. He too has double APOE4 gene so higher risk of ARIA. He no longer gets tired after infusions, sometimes a little dizzy but goes away within a few hours. Good luck!

HutchGS · November 6

My first post here. My DW age 73 has early onset ALZ, not sure about stages, have to research that. She's mostly functional but has short term memory issues, absent minded, and easily frustrated at tasks that used to be simple and commonplace like cooking. She has been taking oral meds (donepezil and memantine) and has been cleared to start Kisunla. We're anxious to see how this goes and would like to hear from others taking this drug.

mbald · November 9

so my DH (57 years old)has to permanently stop donanemab after the 6th infusion because of ARIA. The doctors were surprised ARIA showed up after the 6th infusion, it usually happens earlier on. The hardest part is the hope is gone. We now focus more on the diet, exercise and sleep, which has proven to help without thenside effects. He’s also taking lithium which I read about in a research study. His doctors agreed to try it. They had read the same study and said why not try it.

JJ401 · November 9

DH (82) has has nine Kisunla infusions. MRIs before 1st, 2nd, 3rd, 4th, and 7th. So far no problems. Neurologist said they’d do a PET scan after #12. Depending on the results they will either stop the infusions or do another 6.

DH has one APOE3 gene, and family history. His decline has been slow, like his mother who did not need placement until 90. One older sister had rapid decline and died. One younger sister is currently in care. One sister died of other causes. Two sisters are currently fine.
I am hoping that the infusions will allow DH to stay at home with me.

Jeannie2211 · November 15

https://alzconnected.org/discussion/74515/just-starting-infusions

My DH had 6 Kisulna infusions. He tolerated them with zero issues. At the 7th appt, MRI showed small bleed. They paused treatment for 3 months and will do monthly MRI's and then start him back on infusions. His disease has not progressed since diagnosis. He still functions with complete independence; drives, etc. Holding out hope.

mandp523 · November 15

Hi, My hubby just had his 3rd infusion (3/4 of full dose). Has had no ARIA symptoms yet. He will have MRI again in a little less than 2 weeks.

After 2nd one (1/2 of full dose), he was extremely tired for 4 days. So far, after the 3rd one, he has not been any more tired than usual.

I keep seeing more changes in his behavior - more memory lapse, a lot more anger, withdrawing from others (all except children). I am hopeful that with more Kisunla treatments he will not get worse as fast.

Just starting infusions

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