Leqembi infusions
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I'm reading this and it sounds so much like where my DH . His TAU was .48, Plaques of significant findings And MoCA of 25/30. He is 67. We will be going to a hospital in Charleston SC next month to start the treatments. Leqembi. All I have read seems to tell me the risk is small and the benefit could be more time with my loved one. I plan to have him start it.
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It is difficult to quantify the risk. You use the term "small". It is accurate to state that the chances of developing brain swelling and/or brain bleeding after taking anti-amyloid medication is small for the average Jane/Joe. However, those who carry two APOE4 genes have a much higher rate of brain swelling / bleeding, compared to those with one or zero APOE4 genes. That is why genetic testing is generally part of the diagnosis process for AD: your APOE4 type informs the risk / reward decision you must make.
Then you also must take into account the severity of the brain bleeding/swelling. In most cases, the problem is minor and it goes away by itself after treatment is paused. But there are exceptions, and these cases can result in a trip to the emergency room and subsequent hospitalization. Very rarely, some people have died from brain bleeding/swelling associated with receiving anti-amyloid treatment.
To summarize, the chance of developing brain bleeding/swelling from anti-amyloid treatment is low for most people, but relatively speaking, the chances are much higher for those with two APOE4 genes. For the unlucky few who develop severe brain swelling/bleeding, they may be hospitalized for treatment and there is a chance of dying from the brain swelling/bleeding. Each patient must weigh these risks against the benefit of slowing cognitive decline.1 -
He did the APOE and has one $ and one 3. or Heterozygous. We will be reviewing the risk VS the benefit when we go to the neurologist.
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Brand new here. I visited a neurologist for headaches and he did a multitude of tests, one being a lumbar puncture which revealed my AD. He immediately scheduled me for Leqembi injections and have my first one Friday the 13th (good day huh?). He said I have mild cognitive impairment (I have noticed only a slight decline in memory). I don't know most of the terms discussed in this thread so I'm going to read some more but I guess I just wondered if there is anything you'd recommend.0
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Sorry I didn't mention I'm 73 and in excellent health
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Welcome to our club of those diagnosed with AD and receiving monoclonal anti-body treatment. I was born on a Friday the 13th, my Mom always referred to that as her lucky day!
I recently had my 43rd Leqembi infusion. I'm now on maintenance dosing (an infusion every 4 weeks), after completing 18 months of infusions every two weeks. I had hoped to switch to IQLIK (subcutaneous administration of Leqembi for maintenance dosing), but my Dr is having difficulty establishing a prescription.
I'm hoping that you Doctor has warned you about one of the dangers of treatment with Leqembi: brain swelling and/or brain bleeding. These are collectively referred to as ARIA (Amyloid-Related Imaging Anomaly, so-named as they were discovered via MRI scans of those receiving these drugs). Most cases have no symptoms, and if they are deemed "minor" then treatments may continue. For "moderate" cases, treatment is paused until the ARIA clears, while treatment is stopped for severe cases of ARIA. For those who develop ARIA with symptoms, their reactions include headache, confusion, visual changes, dizziness, nausea, and gait difficulty. You should be on the lookout for any of these symptoms, and quickly report them to your Doctor if you do experience any of these symptoms.
People also experience reactions to the infusions themselves. These typically develop within 30 minutes of starting the infusion, and 70% occurred within the first four infusions. Common symptoms of infusion-related reactions include fever and flu-like symptoms (chills, generalized aches, feeling shaky, and joint pain), nausea, vomiting, hypotension, and hypertension. Some infusion centers pre-treat patients with drugs prior to infusions to help mitigate any infusion-related reactions. You might want to ask about this at your infusion center. Be prepared for a lengthy post-infusion waiting period after your first infusion. This is to check for any post-infusion reactions, I had to wait for several hours. This waiting period is reduced for each subsequent infusion, now-a-days I only have to wait around for about 30 minutes after my infusion is over.
Leqembi dosing is based on body weight, so you will be asked to step on a scale to obtain your body weight prior to your infusion.0 -
To add to above they should DNA for the APOE if you have E4 it puts you at higher risk One gene slight risk 2 is higher risk of ARIA. MY DH has 1 but we will be moving forward with the treatment. He is 67 and has MCI. Being so young the slowdown of this disease is important to us and worth the risk. The MRIs are important to watch for ARIA that doesn't show symptoms.
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Commonly Used Abbreviations
DH = Dear Husband
DW= Dear Wife, Darling Wife
LO = Loved One
ES = Early Stage
EO = Early Onset
FTD = Frontotemporal Dementia
VD = Vascular Dementia
MC = Memory Care
AL = Assisted Living
POA = Power of Attorney
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