Brain swelling (edema) on Kisunla

jaycey · March 9

I'm hoping that others who have had brain swelling as a side effect of Kisunla can give me some ideas and some hope.

I've had a really easy time with Kisunla (Donanemab) since I started in August, and all of my MRIs were perfect. There was break in MRIs from month 5 to month 7, but when I had my MRI last week in preparation for the 7th infusion they found brain swelling in the occipital cortex (I have PCA - the type of early Alzheimer's that starts with neuro-visuel symptoms, so in the occipital cortex).

So, they didn't give me that 7th infusion of Kisunla, and instead gave me 3 days of heavy steroids by infusion (plus 9 days of steroids to take at home). Once they identified it on the MRI I realized that I probably should have known, because I've been dizzy and nauseated, and I've also had really weird spasms in my hands and feet and stomach.

Now I'm really freaked out that this brain swelling won't go down, and that I won't be allowed to continue the Kisunla (which has been making a difference). I'm still dizzy and light-headed and feeling icky, like I have the flu.

Any ideas about how to reduce the brain swelling? Any thoughts from people who have lived through this, and then gotten back on the Kisunla??

Maurymgn · March 19

You are just the person I want to talk to. If your doctor treats you properly, the edema WILL go down. I developed ARIA-E (brain swelling aka edema) on Jan 22 on an MRI. No one noticed it (including me) . I began with the occiptal headache on Jan 28. One thing led to another without treatment until I went to ER on Feb. 6. They gave me steroids IV and I was released the next day on Prednisone 50mg orally daily for 5 days, then a weaning down dosage program for about 3 weeks. I just had an MRI today (3.19.26) to see my edema status. Symptoms mostly disappeared after 2 weeks and are gone now. I was told I would not be able to have Kisumla again. My case became a reportable event to Eli Lilly. If you got treatment for ARIA early on, you might be able to get back onto the Kisunla protocol. Good Luck to you.

jaycey · March 22

Thank you so much for writing - I've felt so alone with this!

I got 3 days of massive infusions of Prednisone (1g!) after the MRI found ARIE-E and then step-down oral doses over 9 days. Yesterday, a week after I finished the Prednisone, and 2 weeks after diagnosis, I finally feel better. I'm still a bit light-headed if I work out or don't sleep enough, but I have more energy than I've had in at least a month or two, which makes me think that the ARIA-E probably started significantly earlier than when it was diagnosed. I hadn't had an MRI for 2 months, so who knows when the oedema actually started - I had all sorts of excuses for why I was dizzy and nauseated - not enough sleep, too much wine, working out too hard . . .), so now I wonder. . .

But why are they telling you that you can't go back on Kisunla? Have you gotten your MRI results from last Thursday yet? My doctor told me they'll resume Kisunla 10 days from now if the MRI shows that it's gone. And if you need proof for your doctor, point him/her to the Trailbreaker studies - they show that 80% of patients who had ARIE-E were able to go back on Kisunla without problems. You can look here: <https://pmc.ncbi.nlm.nih.gov/articles/PMC11894547/> and here: <https://pmc.ncbi.nlm.nih.gov/articles/PMC11894547/#noi250003f3> - do you have other risk factors, like APOE 4?

I'm glad to be in contact with you, and I hope you are able to go back on the drug - do let me know.

Larrybee · March 22

My guess is that the doctors and companies involved in this treatment are concerned about being sued if a negative outcome occurs. The risk of being sued varies depending on the state. When it comes to medical care in America, it's all about money.

jaycey · March 23

Yeah, that's why I trust my neurologist to make the decision of whether to continue over Eli Lilly's!

MichelleVP · April 1

I am 49 and start Kisunla on April 10th, I’ve been pretty anxious about it because honestly I feel like a medical marvel with all my medical issues.

jaycey · April 6

I just want to post here in case anybody has any good ideas: it's 5 weeks after the edema was diagnosed via MRI and a new MRI found a "miniscule diminishing". So frustrating!! Some of you must have experienced this - what is the state of the art for making edema go away? Lots of liquids? No liquids? Cardio? No cardio? Help!

Brain swelling (edema) on Kisunla

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