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Infusion Therapy

First time on here and so happy I found this group. Husband was recently diagnosed with AD. Be interested if anyone’s LO has gone through infusion therapy. Any side effects, what stage they were in when started, drug used, etc. Did they get aPOE4 genetic tested? TIA for your feedback and support

Comments

  • Jeff H
    Jeff H Member Posts: 144
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    Member

    I'm sorry you are here, but I'm glad you have found us.

    My DW has not gone through this treatment, and is not eligible, but this is what I have found.

    Ask your neurologist about it. It's for early stage dementia only.
    If it's Leqembi , It's an IV infusion every two weeks and each session takes an hour or more. If it's Aduhelm, it's an IV infusion once a month.

    The process can go on for many months or years. It's not a cure and only slows the progression.

    Frequent visits every two weeks to the hospital or the Infusion center can be demanding.
    Insurance approval can be complex.

    Again, ask your husbands neurologist about it if it's a right fit for you and him.

  • Michele P
    Michele P Member Posts: 365
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    Member

    Welcome. Your neurologist should be able to explain what drug therapies might be available depending on the stage and gene testing for APOE4 gene which makes you more susceptible to brain bleeds. Infusion drugs are only available for early stage patients. The Bright Focus website has information on drug therapies and videos that go more in depth. These drugs might only slow up the progression.

  • JJ401
    JJ401 Member Posts: 399
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    Member

    DH here had 12 Kisunla infusions — once a month. First couple were longer, but most were about 30 minutes. DH had no side effect. After #12 he was to have a PET scan to determine if he should have 6 more. However, before he could, he fell, hit his head, and had a brain bleed. So he won’t have any more infusions.

    Did it help? Hard to say. But, there were no significant delays while he was on it.

    Blood test - required. DH has one APOE3 gene so his risk for complications was low.

    Insurance. DH has a Medicare supplement, not an Advantage plan. No issues with insurance. I’ve heard of difficulty with some Advantage plans, and for those not on Medicare approval depends on the whim of the insurance.

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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