Leqembi/Kisunla

My wife was 64 when she was diagnosed with MCI with Alzheimer’s pathology. If you met her you wouldn’t know that she has any cognitive impairment so she’s in the very early stage. She decided she wanted to try lecanemab. We discussed side effects, limited benefits, and cost and made the choice to try it. She turned 65 right when they started the infusions and Medicare pays for it. She’s had some side effects but was also taking rivastigmine so that kind of complicated matters. So the neurologist took her off both the infusion and the rivastigmine. Symptoms resolved and her MRI and EEG looked ok, so she started getting the infusion again. We’re in a couple of support groups and met people who have been on lecanemab since it was approved so for at least a year now. They seem to be doing well so we’re encouraged by that.

Since your dad is younger than my wife, your concern about cost is definitely valid. I don’t know if there’s a difference in cost between the two but Kisunla is only once a month so maybe the cost is less? Plus you can check with the companies that make the meds to see if they have a patient support program to help with cost.

If your dad decides not to do the infusions, I’d say look into all the other things that can help improve his overall health and mental resilience. I’ve posted a couple of things here and found there are I think about 12 risk factors and some of them are lifestyle choices. So the basics like eat healthy (MIND diet is often mentioned), exercise, no smoking, limit alcohol, stay socially engaged…there’s also some studies showing a particular daily meditation can help.

I wish you and your dad the best.

The at home injection would be the subcutaneous form that has not yet been approved by the FDA. Our neurologist says it’ll probably get approval later this year. He said even if it does, patients may still have to get infusions first then transition to the subcutaneous injection.

Previous posts have identified three key parameters for Leqembi / Kisunla: Freqeuncy (bi-weekly IV for Leqembi vs monthly IV for Kisunla), effectivity in slowing degradation (27% slowing for Leqembi vs 29% for Kisunla in terms of the Clinical Dementia Rating - Sum of Boxes scoring for cognition), and cost (Leqembi seems cheaper).

The best website I've seen for comparing the two is at the link below

This site notes another difference is in the risk of ARIA (swelling or bleeding in your brain). During the Phase 3 drug trials, Kisunla had a somewhat higher incidence rate of ARIA compared to Leqembi.

Towards the bottom, the site also notes an important difference between the two that impacts the overall costs - the duration of the treatment. For Leqembi, it seems the recommendation is to continue dosing until such point that the disease has progressed to an advanced stage. The apparent idea is that Leqembi is reducing the amyloid in your brain, but this is not so important if there is severe cognitive decline. For Kisunla, treatment can stop when the amyloid plaque is reduced to minimal levels based on PET imaging.

One item not mentioned in the article but which I think may be important is the dosage. Leqembi dosage is 10 mg per kg of body weight. My Leqembi infusions are for 600 mg of Leqembi, as my body weight is around 145 pounds (about 65 kg), and 65 x 10 = 650 (I guess they round down to the nearest 100 mg to get 600 mg for my dosage). Kisunla has a fixed dosage: 700 mg for the first 3 doses and 1400 mg for subsequent doses. So if you have higher than normal body weight, you would be getting lower than normal doses of Kisunla. But if you are skinny, you would receive higher than normal doses. This is perhaps not a big deal, unless you are really thin or really heavy.