Mild cognitive impairment: What questions to ask the neurologist?

I was supposed to have my first IV infusion of Lequembi Tuesday, April 16th. for mild Alzheimer’s. I just canceled the appointment.
My doctor never spoke with me about the side effects of the drug so I did my own research tonight. I discovered that there is a Black Box warning for the possibility of a brain bleed that can be fatal. I have all the warnings listed ie. Previous brain bleed, taking blood thinner for A-fib…

How can a medical staff not recognize the danger this drug poses to me. I think they are just so excited about getting a patient approved for this drug, nothing else matters.

I’m really upset. I’m relying on these medical professionals to help me navigate this awful disease. I need to go elsewhere…

You’re on a blood thinner?? I would think pharmacy would catch that. But agree more discussion needs to take place on that.

That said, I am on an infusion drug for Rheumatoid Arthritis. The warnings are scary - including notable cancer risk. But I have to try to manage the disease. So I accept that risk.

I have recently been diagnosed with mild neurocognitive disorder. My research of available drugs and many promising trials describes that to get drugs past the blood brain barrier where they might do some good introduces bleeding risk. But a drug can’t reduce amyloid plaque - the holy grail of Alzheimer’s treatment - until it gets where it is - on the other side of the barrier that prevents certain substances from getting to the brain itself - the blood brain barrier.

For me your decision is about what scares you the most. For me it is the disease itself. I watched too many family members spend 10 or more years on a path to cruel and horrible death.
I’d prefer to accept a risk that I go out fast. But that’s just me. And while I accept there is bleeding risk, it’s just that - a risk.
If it were more likely than not, it wouldn’t have made it this far.

So I’m surprised and sorry these risks weren’t spelled out for you. Too often Docs don’t think we can handle or even understand the truth. But that explanation is why they get the big bucks. My suggestion is that you force that discussion.

Best of luck.

Ask if you have white matter disease and if so, what he recommends. I also have microvascular brain bleeds that showed up on mri. Never had a head injury at all, waiting to hear if these were caused by migraines or something else, I've had mikd hypertension, but never really high bp.

You’re on a blood thinner?? I would think pharmacy would catch that. But agree more discussion needs to take place on that.

That said, I am on an infusion drug for Rheumatoid Arthritis. The warnings are scary - including notable cancer risk. But I have to try to manage the disease. So I accept that risk.

I have recently been diagnosed with mild neurocognitive disorder. My research of available drugs and many promising trials describes that to get drugs past the blood brain barrier where they might do some good introduces bleeding risk. But a drug can’t reduce amyloid plaque - the holy grail of Alzheimer’s treatment - until it gets where it is - on the other side of the barrier that prevents certain substances from getting to the brain itself - the blood brain barrier.

For me your decision is about what scares you the most. For me it is the disease itself. I watched too many family members spend 10 or more years on a path to cruel and horrible death.
I’d prefer to accept a risk that I go out fast. But that’s just me. And while I accept there is bleeding risk, it’s just that - a risk.
If it were more likely than not, it wouldn’t have made it this far.

So I’m surprised and sorry these risks weren’t spelled out for you. Too often Docs don’t think we can handle or even understand the truth. But that explanation is why they get the big bucks. My suggestion is that you force that discussion.

Best of luck.