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@pb50

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.

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

@pb50
First, I’ve already had an idiopathic brain bleed several years ago.

Currently, I take full strength aspirin every day because I have a history of A-fib.

Thirdly, I have a rare autoimmune disease that has caused my arteries to become inflamed.

The black box warning on Lequembi is very clear. People who have these problems should not be given the drug.

@pb50
Lequembi doesn’t go through a pharmacist like CVS, It’s an infusion performed in an infusion facility.

@pb50 do you take Methotrexate or Rituximab for your RA?
I’ve done both for a rare autoimmune condition I have. The rheumatologist had to take me off Methotrexate because it was damaging my lungs. My blood oxygen levels got low, and test results showed ground glass opacity in my lungs.
Now I take Hydroxychloroquine.