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Alzheimers: Anyone else out there living with dementia?
Brain & Nervous System | Last Active: Aug 1 5:34pm | Replies (37)Comment receiving replies
I have early/mid onset Alzheimer’s—as such, I recently began receiving infusions of Lequembi. I’ve recently completed my third infusion. After each infusion, I have experienced very unpleasant side effects:
an intense fever, with chills that cannot be relieved; headache; body aches—
Basically I feel incredibly sick!
I’m longing to compare notes with others in my boat! I am amazed there is not a proscribed group dedicated to this, since my understanding is that there are many of us!
Replies to "I have early/mid onset Alzheimer’s—as such, I recently began receiving infusions of Lequembi. I’ve recently completed..."
@peggyrk I too was approved for Lequembi when I was diagnosed with mild Alzheimer’s several months ago.
After careful consideration, I decided not to take it. The side effects sounded like things I would choose to avoid. The low, temporary success rate put the “nail in the coffin” so I turned it down.
THE FOLLOWING IS MY OPINION ONLY
The disturbing action of the doctor’s PA when he gave me my diagnosis set off red lights for me. He was absolutely giddy, and almost jumping for joy. He immediately got me to sign papers for my approval.
When I asked him why he is always pushing drugs on me, he quickly answered “I don’t get paid”.
Bingo! Yes he does.
The Pharm. is pushing this very expensive drug…they got the FDA to approve it too quickly, and then Medicare joined the “party”.
I’m sorry you are going through this. I think it’s a shame that they are willing to put a vulnerable part of the population at any risk.
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Dear peggyrk, I have been diagnosed with Mild Cognitive Impairment and a blood test and PET Scan have indicated protein that is associated with Alzheimers. I have had 2 infusions of Leqembi and experienced bad headache, nausea, body aches, fatigue, and low grade fever. As you say, it is not pleasant! My primary suggested I take Tylenol and an allergy pill before the infusion and continue the Tylenol as directed. The second infusion was not fun, but the side effects were less severe. Normally, I would not want to continue with a treatment that makes me sick for 2 days, but I feel a bit desperate since this is the only treatment to slow down the Alzheimer's progression. I've been told that I am fortunate that my Alzheimer's was caught early enough to be eligible for the Leqembi. I pray you have less side effects as your infusions continue and that it is an effective treatment for you. God bless you. It's not easy to deal with such a sad diagnosis, is it?
Miss Patty