When Leqembi causes ARIA

jackiputnam

I'm not out to discourage anyone getting treatment. I'd like to add my experience just to show there is another side of Leqembi. I am 69 years old, diagnosed about 18 months ago. I don't have APOE4 so I felt that was a a risk reduction as well. I was very excited to start my infusions.

My first treatment went great. No headache, no problems. Same with the second. But shortly after my second treatment I had a big multicolored "explosion" in my vision and was rushed to the ER. Everyone was trying to Google ARIA to figure it out. I had a card from my neurologist so that they wouldn't give me any anti-stroke medication. The gave me a CT to check for stroke and sent me home. My colors in my vision resolved and was replaced by a gaping invisible whole in my left visual field. I talked to my doctor who ordered an urgent MRI. Unfortunately, it was the week between Christmas and New Year and people were hard to get a hold of. Radiology made a mistake and assumed it was a regular MRI so they put in for a pre-auth which took several days. In the meantime, I was losing more and more of my left visual field and started developing other neurological symptoms. When I finally got a hold of someone at my Dr's and got my MRI, it showed severe ARIA-E (swelling) and a small area of ARIA-H (bleeding). The swelling had started in my right occipital lobe which caused partial blindness in my left visual field and was moving out from there. I was getting worse by the day until I was able to start steroid infusions. About 95% of my vision on that side has resolved. I still have a hole in my vision but it usually doesn't bother be during the day…my brain makes up for it. I only really notice it when I am tired.

I will add that my neurologist really downplayed the chance of ARIA and also made it sound like it was mostly non-symptomatic.

I know several people who are currently in Leqembi treatment and doing absolutely fine. Would I discourage anyone from getting it? No. We all make our decisions according to our values. I do wish I would have dug through the study information a little more to learn about the incidence of side effects; some people had lasting effects from ARIA that my doctor never mentioned.

My advice? Stay informed. I believe my reaction was rare in it's severity. But it does happen. Take care, everyone.

LBC83

Thanks for sharing your experience, sorry to hear about your problems with ARIA. I agree that it is very important to make an informed decision regarding risk vs reward for either of the two anti-amyloid medications (Leqembi & Kisunla).

I like to refer to the "Appropriate Use Recommendations" (AURs) prepared by a collection of experts for the two drugs. The documents are available for free on the web, below is a link to the Leqembi AURs. In the section titled "Amyloid-Related Imaging Abnormalities", the document notes that the ARIA rates per the Phase 3 trial were 5.4% for APOE4 noncarriers, 10.9% for APOE4 heterozygotes, and 32.6% for APOE4 homozygotes. The rates for symptomatic ARIA (i.e. your type of ARIA with symptoms) for the three respective APOE4 types are 1.4%, 1.7%, and 9.2%. So you are in the very small minority of the 1.4% of non-APOE4 carreries who experienced symptomatic ARIA. I get this is not a comforting statistic for you at this point, but just want to point this out as others balance risk vs reward.

The document included a section titled "Management of Serious and Severe ARIA", which seems to apply directly to your case. The section notes that "before patients are treated with Leqembi, a written protocol for the management of serious and severe ARIA should be developed, and the team of individuals possibly required for patient care should be informed about … the rare occurrences of severe or serious ARIA and the availability of the written protocol. … When patients exhibit such severe symptoms and signs, an MRI scan should be obtained promptly to identify ARIA changes. … Early initiation of high-dose glucocorticoid treatment (e.g. methylprednisolone 1g intravenously per day for 5 days followed by an oral steroid taper over several weeks) should be considered."

https://pubmed.ncbi.nlm.nih.gov/37357276/

jackiputnam

Thank you for this information. I think it’s so important for everyone to know as much as possible about these treatments. I sincerely agree there should have been a plan in place as soon as I went to the ER. I hope that comes into being. If I could have gotten help right away my outcome would have been better. I knew the risk and I felt it was worth a try. God knows, we are all trying to do the best we can under very difficult circumstances. Thank you for your response. I wish you well.

Dorse

Thank you for sharing this experience you have had with the infusions. I am waiting to start the Kisunla infusion. It seems everthing about this horrible diagnosis is concerning

kshif06

https://alzconnected.org/discussion/74574/when-leqembi-causes-aria

I’m so sorry for what you are going through. Your experience is why I was told right after my diagnosis that I wasn’t eligible. I have Cerebral Small Vessel disease. The reason I have Alzheimers. This cause micro bleeds in the brain. I also have an APOE 4 gene. So I follow the Mind diet.