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Support Group for Those of Us Living With Mild Dementia
Aging Well | Last Active: 8 hours ago | Replies (170)Comment receiving replies
@janieohrn76 I was approved and all set to start the infusions. Two days before my first scheduled one, I decided to look up the warnings on this Lequembi. When I read them, I immediately canceled and told the doctor no way.
I have mild dementia. The doctor’s PA was actually smiling and almost giddy when he realized that I could qualify for the drug.
There was no discussion other than, let’s hurry up and get you on this drug.
It’s brand new, fast-tracked through the FDA approval process, and Medicare quickly decided to pay 80% of the annual cost of $26,500.00!
Frankly, I am VERY SUSPICIOUS when the doctor acts like a kid in a candy store when a patient with mild dementia appears in their office, and they qualify for Lequembi.
Lequembi is only 27% effective, for slowing the disease while you take it. At that rate, I am not willing to take the risks.
Replies to "@janieohrn76 I was approved and all set to start the infusions. Two days before my first..."
Funny you say that because when the doctor said that my husband had CIDP the doctor acted as you said giddy like a kid in a candy store. It was also an expensive treatment which we took for 3 months and then stopped as it was not helping...but couldn't help but think...scam...good luck to you .
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I had the same experience - here you are having received devastating news and trying to process that you have a condition that has no cure and will only get worse. And the PA and the Neurologist can't wait to get you on a drug that has poor success rates and serious adverse effects. I know those of us diagnosed with Alzheimer's are feeling rather desperate to do anything that might buy us some "sound mind" time - but at what risk?
I have decided not to even try the Lequembi. I felt pressured and think they were seeing me as a guinea pig and not a person. I pray that there will be break throughs for new effective treatments that don't have such serious risks.