Leqembi infusions
We're looking into getting my DW on Leqembi infusions. Can anyone using this Med tell me if it works or causes more harm?
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My husband has had 20 infusions thus far. There is no improvement, but "perhaps" slowing progression. He is unable to initiate anything on his own- it all requires my assistance. He does still have is ALD's, though. We are waiting for the results of his latest MRI from yesterday to see if there is any brain bleed. His schedule got messed up because of holidays and the infusion clinic closing. He has had one infusion in about a 8 week period while we are awaiting transfer to another clinic.
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there is a search feature at the top where you can put in the word Leqembi and find all the posts related. Most posts say that there is no way to tell if it helped because there is no way to know if it slows progression because each person progresses at different rates based on many factors. Most also said that if there are no side effects to allow them to get the infusions.
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Thank you for getting back to me. God Bless
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Thank you . I can't find the search feature ?
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Click the magnifying glass in the top right corner.
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I just had my 15th infusion of Leqembi. The phase 3 trial for Leqembi showed an average slowing in cognitive decline of 27% over 18 months. This was measured using the Clinical Dementia Rating Sum of Boxes (CDR-SB) test for measuring cognitive capability, assessing three areas of cognition (memory, time/place orientation, judgement/problem solving) and three functions (community affairs, home and hobbies, and personal care). A score of zero in a category means no impairment, a score of 3 indicates severe impairment. As an example, for home & hobbies, a score of 0 indicates life at home and hobbies are well maintained. A score of 0.5 in this category indicates these abilities are slightly impaired, there is a mild but definite impairment for a score of 1, very restricted interests for a score of 2, and a score of 3 means no significant function in the home.
The 27% value was calculated by comparing the average cognitive decrease for those on placebo over 18 months (1.66) versus the average decrease for those on Leqembi (1.21). Again, this was over 18 months. In reviewing the data, some have noted that to state this another way, Leqembi basically buys the person 6 more months at the same cognitive capability compared to someone not taking Leqembi. For example, this might mean somebody taking Leqembi might be able to spend 6 more months at home before being placed in a memory care facility. After the 18 month trial, those who had been receiving the placebo were allowed to switch to Leqembi.
Eisai (developer of Leqembi) has also published data for Leqembi after 36 months of treatment. For this case, the percentage difference in CDR-SB score is calculated using an estimate of how people might have performed if they weren't on Leqembi (because there wasn't anybody left in the study who wasn't taking Leqembi). The estimated change in CDR-SB was 22%, but the time gained by taking Leqembi is increased to around 9 months. Again, there is a caveat with these 36 month results, as they are comparing those on Leqembi with estimates of how people might have performed if they weren't on Leqembi from 18-36 months.
There are generally two concerns about Leqembi. First, some folks have reactions to infusions, regardless of the drugs being infused. Common infusion reactions include fever, chills, nausea, vomiting.
Before getting into the second concern, we must first cover a little biology. Leqembi is in a class of drugs referred to as monoclonal antibodies. This is a fancy term to describe a protein made in a lab that acts like a human antibody and binds to specific targets in the body. In this case, Leqembi binds with amyloid in your brain, serving as a warning beacon to your bodies immune system to latch onto the Leqembi (and the amyloid) and drag it out of your system. Leqembi (as well as Kisunla, a competing monoclonal antibody made by Eli Lily which also removes amyloid) can cause issues in the brain. This problem was noticed early in the development of the monoclonal antibodies, and became known as Amyloid Related Imaging Abnormalities (ARIA) as they were first noticed in MRI images taken of those receiving these drugs.There are two types of ARIA: ARIA-E and ARIA-H.
ARIA-E: The "E" stands for edema (i.e. swelling in your brain)
ARIA-H: The "H" is for hemosiderin, or hemorrhage. If blood is leaking out of the blood vessels in your brain, then you have ARIA-H
Most cases of ARIA-E and ARIA-H are asymptomatic and are usually recognized as incidental ARIA during a follow-up evaluation on MRI.
Most cases of ARIA-E occur early in treatment and decrease with increased duration of exposure to the medicine.
Most cases of ARIA-E resolve completely. Depending on the severity, treatment may continue, be interrupted or discontinued until resolution. Some cases may require specific treatments and even hospitalization.
ARIA-E and ARIA-H may occur concurrently.
In past clinical trials with Leqembi, ARIA-E resolved radiographically over time, whereas ARIA-H can remain visible on subsequent imaging.
In the Phase 3 clinical trial for Leqembi, there is information about the frequency of ARIA-E/-H versus APOE4 gene status. 2.8% of the people on Leqembi had symptomatic ARIA-E (i.e. not very many). By APOE4 status: 1.4% of APOE4 non-carries had symptomatic ARIA-E, 1.7% of APOE4 heterozygotes, and 9.2% of APOE4 homozygotes. For ARIA-H, 11.9% of APOE4 noncarriers experienced ARIA-H, 14% of APOE4 heterozygotes, and 39% of APOE4 homozygotes. But only 0.7% of the people experienced symptomatic ARIA-H (i.e. most of those with ARIA-H didn't know they had ARIA-H until they received the MRI). Due to these numbers, I've read that some locations exclude APOE4 homozygotes from receiving Leqembi. Other organizations permit APOE4 homozygotes to receive Leqembi, but they watch these people extra carefully.
Some might ask, "What is the point of just slowing the disease?" One answer might be that there are also drugs undergoing trials right now to reduce Tau. These drugs are being tested in combination with Leqembi (which again is reducing amyloid). The idea is that the combination of these two drugs might be able to greatly reduce (or maybe even stop) the cognitive decline. Thus, buying more "quality time" may be important, such that if these anti-tau drugs pass the clinical trials and are available at a later date, they would help those who had slowed their cognitive decline by taking Leqembi.9 -
LBC83 gave an excellent overview of Lequembi. My husband, in MCI stage, has APOE-4 homozygotes and had to stop after the first 3 or 4 treatments when the scheduled MRI showed ARIA-H (asymptomatic, thank God). Follow up also showed mild ARIA-E. He has another MRI scheduled this month, after stopping the treatment last summer. We decided to try the treatment because we do not fear death, especially knowing the future of this disease. But if your wife's genetic test does show she has the APOE-4 homozygotes, I would not recommend trying Lequembi because of the increased risk. We are hoping that the new Tau-reducing drug will be available soon, and before my husband's disease progresses too far.
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What I have learned since 27 infusions.
We plan to have about 10 more infusions (that gets us one & and a half years of infusions), then in July drive 635 miles again to Mayo Clinic Rochester MN to get some results.
With Leqembi I find I’m now somewhat tired after the last three infusions, yet I’m able to do the same daily routine.
If one would like to know more details about the infusion:
I had a very bad reaction in the first infusion, felt fine then suddenly 9 hours later I was vomiting, very sick, hardly could talk, then gibberish. We had ambulance transport to the local hospital which had never heard of Leqembi, but my wonderful DW was ready to give information to clinic staff to study because no one had ever heard of Leqembi. DW also brought every med I take. Next, we went to a larger Hospital because they had the required MRI to verify that I did not have brain bleed. By then it was 6:00 AM the next day and I awoke to DW screaming “don’t put that in”. The nurse was just about to inject blood thinner which can be deadly to the brain. (Very important to know and be ready for that). The next day I was fine, (you can calm down now).
Tip we discovered: We immediately changed Leqembi from a one hr drip to 2 hours and have done it since. We next found that 2 Extra Strength Tylenol and one Claritin help dealing better with Leqembi prior to injection, I also take the 2 Tylenol before sleep. The ‘poke” to inject Leqembi was an issue for me, I have had nurses that just can’t do it and after stabbing my wrist several times they find someone else to do it. Three 3 injections back I finally had a new nurse suggesting injecting in the elbow, it now works100% better.
Cold is an issue; we have the pharmacy warm the Leqembi room temperature 30 minutes before we arrive. Coldness usually arises at bedtime. That does vary, but it is easy to have enough clothes. Soup seems to be the best meal for me after infusion.
I have one APEO 4 gene.
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my DH has been diagnosed with a memory problem- degenerative cognition- rather than MCI and the doctor has suggested he begin Leqembi and has ordered an MRI to see if he is a candidate for it. She said they would be checking for scar tissue on the brain which would mean he couldn’t take it. Is this a drug for Alzheimer’s and MCI or is it also prescribed for pre-MCI? I’m confused about the diagnosis for him.
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I’m not a medical professional, but that sounds very strange to me. Leqembi attacks the amyloid plaque of Alzheimer’s Disease, and if he hasn’t had the PET scan to diagnose that, I don’t know why your doctor would prescribe it. Get another opinion from a neurologist or geriatrician.
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BeckyT - Leqembi and Kisunla carry an elevated risk of serious side effects for people with certain genetic markers. I suggest you have lab tests completed to determine if your husband carries the apoe4/e4 gene.
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Hi SD Dave
You said you have one APEO 4 gene. Do you also have APEO 3 gene?
My DW has both. Thank you for telling us about your 27 infusions - most feedback I'm have seen abot Leqembi infusions.
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Agreed! SD Dave thank you for sharing it was very informational, giving me things to look for as we begin the treatments.
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First - THANK YOU! We’re having such a hard time finding any feedback on these therapies (leqembi & kisunla).
My DW is in the same position as original poster. We’re trying to decide if it’s worth it. She is 72, in MCI stage (but maybe further along), with APOE 3/4. Neuro has prescribed Kisunla. DW reluctant and, frankly, the more I read the less enthusiastic I am.
So, South Dakota Dave, the big question: Given your experience and what you know now, would you make the same choice?
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So glad I found this group and South Dakota Dave your information is so helpful. I have my mother scheduled to start Leqembi at the end of this week. I have her signed up to have the infusions done at an infusion clinic (First Choice Infusions in Boca Raton). I was considering switching to have her get the infusions as an out patient at Boca Regional Hospital so that she would be at the hospital just in case something went wrong. Any thoughts on whether one would be better than the other?
Also, she is very frail. Does anyone know if that will have an impact on how she handles the treatment?
She had the initial PET and MRI and does not have any of the problematic markers.
thank you all for your help1 -
I'd suggest the hospital at least for the first couple of infusions. Getting through the PET and MRI shows a lot! But I am far from a Doc of any sort. We wish you folks the very best!
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Yes, I have the APOE 3 gene and the APOE 4 gene which is fine with MAYO Clinic. Wish you folks the best!
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Leqembi was all we had when I had Alzheimer's. I can't find anything better.
A few days ago, we heard of a new FDA approval scheduled for Leqembi that will be available sometime after August 2025. I am much more hopeful now because we find Eisai (the owner) Leqembi has already been using their subcutaneous (SC) injector with Leqembi which gets us out of the infusion center into a new at-home procedure to administer Leqembi much faster and less costly and is showing the SC formulations resulted in 14% greater amyloid removal!
Folks on this site are showing Kisunla as not having the new injector for at home delivery or the 14% of amyloid removal.
Wish you folks the best!
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Thank you. the MRI came back looking fairly normal for his age and the geriatric doctor is now setting him up for a blood test, amyloid pet scan, and a referral to a neurologist, so I guess the mri was just a first step. She has, at this point, given him a diagnosis of mild dementia.
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My wife shows relatively unremarkable info on multiple MRIs. The genetic info will come from the lab results. We were rejected for leqembi and kisunla by 2 prominent medical schools due to the side effect risk vs marginal benefit of slowing progression.
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My DH was diagnosed with MCI due to AD six months ago. He is APOE4, likely to have the most risk of side effects with Leqembi. We’ve been in conversations with neurologists and doing research on our own. The more we read, the more we find that whether or not to start Leqembi will be a very tough decision.
My DH has a different rare disease that recently required infusions once a month for six months. We learned a lot from that experience. Though his medications had no negative side effects, getting regular infusions was physically and emotionally difficult. His veins developed scar tissue after only four infusions making it increasingly difficult and painful to find the vein. Each infusion took over 2 hours (plus drive time and wait time) requiring doses of steroids and Benedryl to ease reactions to the drugs. We understand these extra measures are common for patients on Leqembi too. The thing that kept us going was measurable, positive results. Blood tests showed us exactly when he went into remission.
Now, faced with the decision about Leqembi, it’s very hard for us to imagine eighteen months of infusions every 2 weeks, plus several MRI scans, and the risk of dangerous side effects - with no measurable results. The studies show the median amount of time Leqembi slows AD is six months, but there’s no way to detect or measure results for any one individual. He won’t feel any better. The AD will still progress. Even if they could guarantee him the extra six months, he’d pay for those months with eighteen hard ones.My DH is extremely physically fit. His AD symptoms are very mild. We want to guard his quality of life now, while he’s at his best and can enjoy it. IT'S A VERY TOUGH DECISION.
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My husband is the same as yours, minus the additional rare disease. Knowing what we know now, after a few lecanemab infusions, we would not do them again. (He developed ARIA, which did resolve.) He was in excellent shape already, but did begin eating more vegetables and getting regular exercise, as recommended. It has been over 16 months since his MCI diagnosis, and there has been only slight progression. Although I believe he was in MCI stage several years before diagnosis. We are still hoping that Alzheon’s tablet ALZ-801 will become available before he progresses beyond the early stages. I. The meantime, we are able to travel and enjoy retirement.
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Sorry to hear about your difficulties. I understand the difficulty in making the decision. I only have a single APOE4 gene, so my incremental risk from ARIA was small in comparison to having both APOE4 genes. I elected to start on Leqembi, and have had no issues. I also only have a short commute to receive infusions.
One option might be to wait for the subcutaneous version of Leqembi. Eisai (Japanese company that developed Leqembi) submitted an application to the FDA for approval of a maintenance dose of Leqembi using their new subcutaneous version of the drug in January 2025. The FDA set an action date of Aug 2025. Eisai has previously indicated that if/when the FDA approves the subcutaneous version of Leqembi for maintenance dosing, then they intend to submit another request to the FDA to allow for the subcutaneous version of Leqembi to be used for the initial dosing. That could be a long wait, but it might be an option for you.
Another option might be consider Kisunla, the competitor drug to Leqembi. One of the benefits of Kisunla is that the infusions are only monthly. Another benefit is that Kisunla treatment can be stopped after PET scans show amyloid has been removed from the brain. Inquiring minds might ask why Leqembi dosing continues after amyloid plaque is cleared. Eisai replies that Leqembi is the only dual-acting treatment approved by the FDA. Leqembi clears "highly toxic" amyloid protofibrils "which can continue to cause neuronal injury even after amyloid-beta plaque has been cleared from the brain."2 -
Your situation does sound very similar to ours. There are so many studies out there for AD treatments, approaching it from completely different points of view. We're hoping for breakthroughs too. But in the mean time, enjoy life.
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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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