Hello Everyone - just diagnosed with AD

Manuel_Pagan

I am a retired engineer, 71 years old, born and raised in Ponce, Puerto Rico, but I have been living on the mainland since 1984. I am a widower living alone and was recently diagnosed with very early stage AD based on the results of my PET Scan, even though my PTAU 217 levels showed normal. I do not have the PTOE 4 (is that right?) gene. My doctor and I talked about Leqembi and Kisunla, but I have had pulmonary embolisms and am on Xarelto. My doctor opted to hold off on either of these two treatments out of caution and prescribed Donepezil. He said the studies for these new drugs excluded patients on anticoagulants like Xarelto.
I would like to hear from anyone who has experience with using these new medicines with anticoagulants, or have suspended use of anticoagulants before starting on these medicines, etc.
Planning for the future is a concern also. Very confused right now on where to go from here.

Watson1

manuel like you i have a medical situation that makes these new fancy drugs un available for my use . i have been on doneprosol for a couple of years now and it seems to be doing what the testing shows stabilization for now in this always unsure journey. as an engineer concentrate on all aspects of alzheimer's. these new products are a golden carrot which offer so little but medical risk and somebody financial gain. you will always be you but you need to understand the changes that will be coming. its not some big bang its little by little that things no longer line up. the more you imbrace your future the easier it will be. I've been on my ad journey for over 2 years. i finished a canvas a couple of days ago and have a smaller study i will examine today. happy engineering my nephew is an engineer for nasa flys satellites……….

LBC83

I am also a retired Engineer. I just had my 23rd infusion of Leqembi, with zero issues. I recently had another memory test, and I have experienced no cognitive decline for around one year. So I consider myself an example of a success story for Leqembi.

Manuel Pagan's Dr is correct. Quoting from the published "Lecanemab: Appropriate Use Recommendations" (AUR) by Cummings et. al., "Anticoagulation increases the risk of hemorrhage, and the AUR recommends that patients requiring anticoagulants not receive Lecanemab until more data regarding this interaction are available."

Regarding your genetic type, the proper technical term is APOE4. The APOE gene has three common variants: e2, e3, and e4. If you have one copy of APOE4 from either of your genetic parents, then you are referred to as heterozygous. If you have two copies of APOE4 from both of your genetic parents, you are homozygous. About 2% of people are homozygous for APOE4. Unfortunately, homozygous individuals are more likely to experience brain bleeding / swelling from Leqembi or Kisunla (referred to as ARIA), and they are also unfortunately more likely to develop AD. Lucky for you, you are clear of APOE4, so you would have the lowest risks from one of these drugs.

There is a lengthy discussion about Leqembi in this forum over in a different thread, link below

https://alzconnected.org/discussion/comment/242314#Comment_242314

Manuel_Pagan

Thank you Watson1 & LBC83. I saw the thread LBC83 mentioned, it has a lot of information regarding the APOE4 gene's effect of Lequembi and Kisunla, but I did not see any comments on use of anti-coagulants, other than basically don't do it. Anticoagulants are an issue for Kisunla as well as Leqembi, so I'm hoping that someone at some point studies what their effects are.

Larrybee

I have been taking the anti-inflammatory asthma drug montelukast multiple times a day since 2016 and the extreme mental fatigue that I was experiencing completely went away within a week of my starting the drug. I believe that this drug has prevented me from going down the same path as my mother who died from Alzheimer's about 15 years after diagnosis.

Emory University submitted results in 2024 to the FDA of its Montelukast Alzheimers Clinical trial. It showed that the placebo group had significant cognitive improvement and the montelukast group had cognitive decline. This indicates to me tampering and that the medications were switched between the two groups. The principle investigator of the Emory trial has connections with the pharmaceutical company that is marketing lecanemab.

Emory clinical trial https://clinicaltrials.gov/study/NCT03991988

My website. www.montelukast-repurposed.org

You can search "montelukast" on alzconnected.org for more of my posts.

Montelukast is a prescription drug in the US so it is extremely difficult get a doctor to write a prescription for this purpose. However montelukast is available in Mexico and many other Spanish speaking countries without a prescription. Since you know Spanish, you may know someone who can buy it for you.

LBC83

According to my quick web searches, IntelGenx reported their preliminary results from their Phase IIa AD trial with Montelukast (MTK) in adults with mild to moderate AD in July 2024. The trial had 59 adult patients, with 52 completing the 26 week trial. A "topline analyisis" showed no cognition benefit observed across all MTK doses compared to placebo. However, "a separate analysis for each dose indicated a significant improvement in cognition among patients who consistently received the 30mg twice-daily dosage of MTK." The article concludes with "Given this, further study of this 30mg MTK twice-daily dose with consistent treatment will be of value."

https://www.clinicaltrialsarena.com/news/intelgenx-alzheimers-disease-trial/?cf-view

lfaust58

Should those of us who are already on Infusion meds like Lequmbi or kisuna take this as well or Instead of?

LBC83

Here is my opinion about taking MTK as a supplement to Leqembi / Kisunla - why pick that particular drug as a supplement? I am an Engineer by training, I like data-driven decisions. Sure, a Phase 2 trial showed some success with MTK. A researcher named Cummings published a survey report of all AD drugs undergoing clinical trials as of Jan 2024. He interrogated the clinicaltrials.gov website (i.e. this is not rocket science, anybody can go to this website and look into the various drugs undergoing clinical trials for AD). He found 164 clinical trialsfor Alzheimer's assessing 127 drugs:

- 26 trials testing 25 drugs in Phase 1

- 90 trials testing 81 drugs in Phase 2

- 48 trials testing 25 drugs in Phase 3

He also sorted the drugs by category:

1. Neurotransmitter Receptors (30)
2. Inflammation / Immunity (25)
3. Amyloid (23)
4. Synaptic Plasticity / Neuroprotection (15)
5. Tau (11)
6. Metabolism and Bioenergetics (8)

Ok, so you want to take something as a supplement to Leqembi/Kisunla. On what basis do you select MTK over the numerous other drugs undergoing clinical trials? My Dr. prescribed Aricept in addition to Leqembi. Clinical trials have shown Aricept helps improve cognition, and it is available via prescription (i.e. Aricept is fully approved by the FDA). The other hot topic is a combination of Leqembi / Kisunla with an anti-tau drug. There is one such trial currently recruiting, combining Leqembi with the anti-tau drug E2814. Earlier trials have shown E2814 is effective at significantly reducing tau. If I were newly-diagnosed with AD, I would seriously consider joining a trial combining Leqembi & E2814 (I investigated joining the trial after I started on Leqembi, I found that those already on Leqembi are excluded from participating in the trial, which makes sense). Everybody in the trial receives Leqembi as a backbone, then half are on a placebo as a combination and the other half on E2814. So participants have a 50-50 chance of receiving the anti-tau drug in combination with Leqembi. There is another combination trial scheduled to start later this year, run out of the University of California - San Francisco called the Alzheimer's Tau Platform.

Larrybee

I have to vote for montelukast as a treatment. I am 77 years old and I have been taking it 10 mg twice and later three times a day for 9 years. After the Intelgenx preliminary report, I started taking 20 mg 3 times a day. Montelukast safely reduces chronic inflammation and I think that is a good thing, especially for an older person. I know that there is a warning about neuropsychiatric side effects. The warning came about after parents complained to the FDA about their children, which were being treated for asthma, having these side effects. For adults, it has proved very safe. I have felt so much better after I started taking it.

The thing about montelukast is that it is available now. The vast majority of drugs being trialed will never become available or you will have to wait many years for them get approved and come to market. The problem with montelukast is that it can be bought only in certain countries like Mexico without a prescription.