From mci to alz

drock57 · August 14

Was recently diagnosed as mci and dr put me on memantime. Further blood tests confirmed alz but I am still on memantime. Should I be getting infusions or is memantime enough???? Trying to get into a special clinic but not accepted yet.

Dneige89 · August 14

Hello. Your neurologist should be able to explain whether or not you need to be on one of the anti-amyloid infusion drugs. This site is a great resource to learn about people’s experiences with the infusions. Like everything in life, there are pros and cons.

I was diagnosed MCI/Alz in December 2025 based on PTau blood test and PetScan. However, I was turned down for clinical trials because my PTau, PetScan, and memory test showed I was not advanced enough to take part. I am APOE 3/3. All of your results will be part of you and your neurologist’s treatment decision making process.

Are you symptomatic? If you are minimally impacted by memory challenges, the memantime may be enough for now allowing you time to make a plan with your neurologist or visit a major memory care clinic such as Mayo Clinic or Cleveland Clinic.

I wish you all the best.🤗

GEH · August 14

https://alzconnected.org/discussion/76831/from-mci-to-alz

Hi … I was diagnosed several years ago with Alzheimer's. When originally diagnosed my previous neurologist put me on Memantine and a whole bunch of holistic herbs and etc. It took me a minute, after trying a couple other Dr's., but i did research found that I lived near a Barrows Neurological hospital and I go exclusively there for all diagnostics, treatments and care. If you live near one, I would highly recommend Mine is 1.5 hours away but I go because they are top notch andcwell worth the drive. Wishing you only the best.

drock57 · August 14

https://alzconnected.org/discussion/comment/279890#Comment_279890

Thanks for the feedback, yes, i would say minimally impacted, but noticably going down hill, so maybe I just need to wait and see what comes up. Hope to get onto a facility about 5 hours from here.

LBC83 · August 15

Sorry to hear about your diagnosis. In my initial visit with a Nurse Practitioner at the Cleveland Clinic in January 2024, I scored 25/30 on the MoCA (Montreal Cognitive Assessment). This triggered a prescription for Aricept, a different drug to improve memory (similar to Memantine). After confirming the presence of amyloid plaque via a lumbar puncture, I received an MCI diagnosis and started on anti-amyloid infusions with Leqembi in June 2024. I recently had my 48th Leqembi infusion (I am now in the phase known as "maintenance dosing"), and I'm still taking Aricept daily.

The two drugs work very differently. Leqembi (and Kisunla, the other FDA-approved anti-amyloid therapy) remove amyloid plaque, a protein in the brain's of those with Alzheimer's. Aricept / Memantine work quite differently, helping the neurons communicate better and thus helping with cognition. But Aricept / Memantine don't have any impact on amyloid plaque.

Doctors classify Aricept / Memantine as drugs that help manage symptoms of AD, while Leqembi/Kisunla are referred to as disease-modifying treatments as they actually change the fundamental biology in the brain of somebody with AD (again by removing amyloid plaque).

So the direct answer to your question is that while Memantime may help a bit with cognition, it will not alter the overall course of Alzheimer's. In contrast, Leqembi/Kisunla demonstrated in clinical trials that they did alter the course of Alzheimer's in patients receiving the infusions. But there is a cautionary note: some of the side effects of treatment with Leqembi/Kisunla can be dangerous. Specifically, these drugs can lead to brain bleeding / swelling. This only occured in some of the participants in the Phase 3 trial, and in most cases, the symptoms were mild such that the people didn't know they had an issue (the problem was discovered via regular MRI scans which are now required for monitoring any impact of the infusion therapy). But for some, the symptoms were not mild. Each patient must determine if they want to take the risk with anti-amyloid therapy, or let "nature take its course."

Last point, you specifically mention "infusions". Recently, the FDA approved a subcutaneous dosing of Leqembi. This can be self-administered at home by patients, it is sold under the brand name of IQLIK. This eliminates any infusions, patients simply inject themselves with the drug on a weekly basis.

whorne_73 · August 15

Excellent explanation of anti -amyloid therapy. I have had 18 infusions of the LEQEMBI medication. So far, I haven’t had any adverse reactions.

drock57 · August 17

Thankyou for a clear explanation! I have sent all the documentation required to a great clinic that does the infusions, but have heard it can take a long time to get in. If I dont hear from them soon I might just start a parrallel path and see if my family DR can get me lined up with the IQLIK path. I am in the low 20's on the MOCA scores. Its clear these drugs are working and although I am no fan of MRI's, (who is!) I don't want to stay in limbo and risk further decline.

GEH · August 17

Leqembi Infusions... FYI

(sorry it is so long of a post)

I just remembered something about how I got hooked up the Leqembi Infusions., my Dr. had prescribed me to get them but I could not afford the prices that were being charged for each Infusions.

I don't remember exactly what the per Infusions cost to me would have been but is was like over $500 per each every two weeks. Like everybody else I could not have possibly afforded that.

However, somehow (I no longer remember how), I was hooked up with a placed called Eisai, Inc. For the first 20+ or so infusions, I paid zero amount copay. However, for some reason recently I am now paying just my normal Dr. Vist copay of $40 for each infusion per my Medicare Advantage Plan, which appears to me to still be a bargain. Of course no charge was OK too, lol. (PS I was on the same Medicare Advantage plans when I started as I am now so I dont know what changed.)

Please see below for the info I found on the Google regarding Eisai…

Eisai Inc. runs patient assistance programs that can provide certain qualifying medications at no charge to eligible individuals who lack coverage or cannot afford their treatment. However, these programs typically supply the medication itself for free rather than covering all external medical administration or facility fees for an infusion.How Eisai Assistance Programs WorkFree Medication Supply: Qualifying uninsured or underinsured patients can receive prescription products at zero cost if they meet specific income and eligibility rules.Exclusions: Programs generally do not cover costs for patients enrolled in most federal or state healthcare programs like Medicare or Medicaid for free-drug grants, though co-pay cards exist for commercial insurance plans under separate rules.Infusion/Administration Costs: While the drug itself may be provided free through an assistance program, separate fees charged by a hospital, clinic, or infusion center for the physical procedure of administering the infusion might still apply or require separate financial navigation.Getting SupportYou can explore active offerings through Eisai Patient Support or call their support line to check eligibility for a specific prescribed therapy.Staff or nurse case managers at the manufacturer or your clinic can help coordinate logistics and locate certified specialty pharmacies or infusion sites.If you share the name of the specific medication or treatment you are asking about, I can give you more accurate details on its specific assistance program.

Hope this is helpful.

GEH

LBC83 · August 17

https://alzconnected.org/discussion/comment/280149#Comment_280149

Eisai is the company that led the development of Leqembi. Their patient support program (which can cover some of the cost of the infusions) is explained on their Leqembi website. Eli Lilly, developer of the other anti-amyloid therapy now available (named Kisunla), also operates a patient support program for those who need assistance paying the costs of the drug.

jskswain · August 17

https://alzconnected.org/discussion/comment/279890#Comment_279890

Thank you for yor message. I am experiencing memory loss and some cognitive problems. I've not heard of memantime. I'll ask my neurologist about it.

I'm still trying to wrap my head around this whole thing. I have had a TBI that has caused some memory issues and I've had a mild stroke that I believe is not relevant at this point but it's confusing. How do I know what problems are because of the TBI or the stroke or aging. It's so complicated.

jskswain · August 17

https://alzconnected.org/discussion/comment/279890#Comment_279890

My doctor told me that the infusions would not improve my disease enough to justify the travel.The place to get the infusion near my home has a year and a half long waiting list. The next closest center would be 100 miles one way.

Dneige89 · August 17

Hello. I am sorry to learn the infusions are not available near you. Since you had a TBI and a minor stroke, I humbly suggest you go to one of the major neurological centers for a thorough examination. The anxiety about an Alzheimer’s diagnosis plays a role in our quality of life, too. Infusions may not be your best option depending on your testing results. I truly wish you all the best.🙏

persevere · August 17

Is there some reason you’re not using aricept? That’s usually the very first thing they prescribe in the early stages. I think it helped my wife but some of the side effects were too much. Used it for a couple years. I never felt the nemenda did much.

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