Leqembi pros and cons?

makking

My DH has just been diagnosed this week at age 64. I think we are at about late Stage 3-early Stage 4. He has done a blood draw for genotyping. Leqembi isn't currently available in our area, but his neurologist is recommending it when it is. We have many questions about side effects, cost (he is not yet Medicare eligible), time of commitment, experience in general. Please share what your experience or knowledge? :| :|

PJ52

My 72yo husband was diagnosed, via PET scan, last October, as having MCI due to Alzheimer’s. This is a very early stage. He was actually diagnosed with MCI several years ago, which was probably the beginning of AD, and has declined somewhat. He is also APOE4, which increases the risks from Lecanemab treatment. But he is otherwise in excellent health. After a lot of discussion with his geriatrician, we decided to go with it. We know what will happen without treatment. 😢 So it seems worth the risk, and the time commitment, to try to slow down the disease, and are hoping to keep him in early stage until one of the better drugs currently in the pipeline is approved. The bottom line, I think, is to start as soon as possible. Just the approval process can take several weeks. Are you close enough to a facility that does offer it to get the treatment, even if means some travel?

We do have Medicare plus a supplemental policy. If our supplemental refuses to pay, our cost will be about $800 per infusion. We have to drive 5 hours round trip to a major medical center to receive the infusions (or to see his geriatrician). He had the first one a week ago (no aftereffects at all), with the second coming up next week. We rented an Airbnb house near the med center for a month, which gets him through the first three infusions. We will most likely spend the night following each infusion after that rather than drive home the same day.

ackermac

My dad was just diagnosed this week via PET scan at the Mayo. We are looking for a provider in either Omaha, NE, or Sioux Falls, SD. My dad is wanting to get into treatment if possible.

PJ52

https://alzconnected.org/discussion/comment/206434#Comment_206434

Good luck and keep us posted!

makking

https://alzconnected.org/discussion/comment/206297#Comment_206297

https://alzconnected.org/discussion/comment/206297#Comment_206297

I'm still working full-time, at 58, so our travelling situation might be somewhat different, but we are 5-6 hours from the nearest facility, as well. We are currently awaiting results from genotyping, so will know soon regarding APOE4. I can work remotely and make the travel work, but past that, I suppose we have a couple of significant concerns. I really am just asking in terms of experiences, because I am confused and overwhelmed by what I don't know.

1. If you don't mind my asking, what caused you to decide to pursue the infusions, with the potential side effects? I know all drugs have potential side effect - these just seem extreme. My husband does not react well to many medications, including infusions and medications he received when he had Covid in 2021. He is in good health, overall, and has worked as a professional driver until January of this year, but lingering difficulties from Covid have been tough. The infusion side affects (from what little I've been able to find) seem to affect a high percentage of participants and potentially significantly - hence the need for regular MRIs and scans. We're wondering what other medications are available, even to manage only symptomatically, and if those potential side effects are less severe.
   
2. The ongoing cost seems significant, for what appears to be minimal gain in slowing the disease progress - possibly $70,000-$100,00 per year in total medical costs to insurance and to us? My understanding is that an 18-month trial of infusions every two weeks created a gain of up to six months in delaying the progression, but did not reverse the effects. Does that mean that the infusions continue indefinitely?

His neurologist is saying that this is "the best thing out there right now". What am I missing?

I am absolutely not trying to be pessimistic or judgmental, in any way. I'm just curious and trying to understand all the information, and I am open to trying almost anything, and these are just my initial concerns, on the face of it all. I am (as we all are) my husband's advocate in this journey, and I feel responsible for knowing the best and reasonable or unreasonable ways I have access to, to get help for him.

Thank you to everyone on this thread for hearing my heart and offering any information from your experience. Links, articles, research, personal experience are all welcome!

PJ52

Hi, makking. I'm sorry your husband still has lingering effects from Covid. That is so hard, especially still trying/needing to work. I understand your concern considering he has had reactions before. My husband is the opposite: never a side effect from anything. And he just doesn't worry about it. I've read everything I can find on line about lecanemab, including medical journals, comments on articles in those journals, NIH reports, details of the death of one of the trial participants who continued on the drug after the trial (probably received the placebo during the trial), and what contributed to her death. There are doctors/scientists who support the treatment, and those who don't. I'll try to find those articles and send the links. Our own scientist-son said basically the same thing about the drug as your doctor: it's just all we have right now. (Husband has been on Depakote for mood stability for several years, and added Aricept when blood work showed he was at high risk for AD. Geriatrician also said hearing aids are very important, if needed, and at least 150 mins of moderate to strenuous exercise per week. Get the heartrate up.). Alzheon has a promising pill in clinical trials now, and there are a couple more coming down the pike, none of which have the problematic side effects, and work in different ways from lecanemab. Perhaps they can even be combined.

As to your questions: 1. At first we chose to not to receive treatment and to just focus on living fully without worry about side effects. But it didn't feel right, and after talking again to his doctor and other medical friends and family, we changed our mind. His doctor said having seen the ravages of AD, he would choose to treat himself in the same situation and accept the risks. And just having AD already increases the risk of ARIAs even without treatment. My husband has much the same attitude as his doctor: not afraid of death; no worry about side effects; trust in the medical/scientific research field. He does fear disability, but there have been no reported cases of permanent disability from the side effects. And he can continue to do all his favorite outdoor activities while undergoing treatment. One more note - his doctor starts his APOE4 patients on a lower dose which he feels MIGHT reduce the side effects risk.

2. You're right that lecanemab does not reverse the damage already done. When I expressed my concern about the brief delay in progression v. the serious side effects, the doctor said we really don't know - there just isn't enough evidence to say how long progression will be delayed. Data is being collected from those receiving the treatment, and that will all go into the "big" data base. I like knowing we are helping to learn more about how successful (or not) lecanemab is. I also wonder if the treatment will continue indefinitely after 18 months, if it is working. That's one of my next questions for the doctor. Makers Eisai and Biogen are working on an injectable form that could be taken at home, although not expected to be approved this year. That would decrease cost, I would think.

Yes, being their advocate is overwhelming. As every provider as said to me, you must take care of yourself, too. I have started seeing a wonderful therapist who specializes in seniors with chronic illness and their caregivers. I am also, sadly, arranging to move my 93yo mother, who lives with us, to assisted living in another state where there will be family nearby to help care for her.

allit

https://alzconnected.org/discussion/comment/206529#Comment_206529

very well thought out. my spouse was just diagnosed with MCI and is being offered lecanemab. we have an appointment this week to get more info and ask questions. i've been doing a lot of internet searching and trying to get caught up on it all. for what it's worth, i came across an announcement from Eisai from 5/14/24 that they've applied to the FDA for approval of a subcutaneous weekly injection which would start after the biweekly IV infusion. so apparently, they feel that the results they are seeing from data they are still collecting from the original study support long term use past 18 months.

allit

https://alzconnected.org/discussion/comment/206489#Comment_206489

regarding your husband's Covid infection. my wife had Covid twice. i've been wondering if somehow this new diagnosis of MCI could be a result of the Covid infection and some lingering infection. like long Covid. has there been any consideration of that for your husband?

makking

https://alzconnected.org/discussion/comment/209647#Comment_209647

I continue to include that factor in discussions with doctors, because I do believe it's relevant and I want it to be part of his record, although I can't say I believe it was the cause. My husband has multiple side effects and symptoms generally identifiable as Long Covid-related, along with other not-so-easily identified "random" issues that have cropped up since Covid (mostly immunological, neurological, and psychological), for which he is receiving treatment. He was very active and considered medically healthy prior to Covid, with no known comorbidity factors.

Having said that, my husband genotyped as 4/4, and his mother exhibited symptoms of dementia before she died at 76, so he was approximately 70% genetically predisposed, so I suppose my current stance, from everything I have been able to find in reading, is that Covid just didn't help - maybe it was the factor that activated a disease that might have otherwise remained latent indefinitely, or at least until his 70s, instead of emerging at 60.

I continue to read and document, because I do believe new Covid-related data will continue to emerge over time, and while it might not help us, it might someday be of use for someone else.

allit

https://alzconnected.org/discussion/comment/210047#Comment_210047

thanks. i'm thinking along the same line. even if Covid contributed, unless it is something that is still actively contributing to the amyloid plaque and tau tangle build up then right now we have to go with what is available. try to clean up the plaque and tangles and address symptoms that can be addressed. and keep up with any Covid relevant info. btw, my wife is genotype 3/3 which i think is interesting. i guess that means, she doesn't have the genotype that is related to the inherited form of AD. so does that mean this was all environmental and maybe due to other controllable factors? idk

wayner

My wife was diagnosed with early onset alzheimers in October last year. She started with symptoms after receiving at the same time a covid vaccine and flu shot together. She is the second person I know of that this happened to and I truly believe this is what caused this to happen. Anyway after months of testing trying to figure out what was going on with her the diagnose was given. After that was then the battle with getting the leqembi infusions and finally after a couple months she started receiving her treatments. She just had her 7th treatment and had had 2 MRIs with no bleeds and no side affects. At this point for me it's hard to say how it's going. I have read that it could take a couple months to start working so she should be at that point. To me she has good days and bad days with her memory but I can say the disease has definitely caused damage to her short term memory. I have allot of anger towards the her first dr. for not taking this as serious as it is and for the whole process following that that took so long to get the diagnosis. Along with the time it took to get the approval thru Medicare and get her treatments started. I feel she has been robbed of her short term memory by the whole medical system and how they don't take this disease as serious as it really is. She was a formal teacher that was so smart and now seeing after a year what has happened to her makes me so sad. I'm really hoping that leqembi helps her. I know it's not going to cure what's already happened to her but at least slow things down and give her more time to enjoy our time together.

Mimi of 8

I appreciate the information and discussion about LEQEMBI. My husband’s neurologist is definitely encouraging my husband with MCI to have the infusions. I was wondering if any of your DLO’s have tested high on the t-pau217.

PJ52

https://alzconnected.org/discussion/comment/206529#Comment_206529

UPDATE: The MRI done immediately after my husband's 4th infusion on May 23 (all 4 at half dose) showed moderate ARIA-H (microhemorrages). He had no symptoms, but was at increased risk due to having two copies of APOE4. Treatment was paused, and a follow up MRI was done a month later. That one showed severe ARIA-H, plus mild swelling in one area (ARIA-E). Still no symptoms, thank God. So treatment was stopped. He will have video visit with neurologist next month, and probably another MRI after that to check for resolution of ARIAs. Although I still have concerns/questions about how long the increased risk of ARIAs may last (has permanent damage been done?), our life is more relaxed now without the trips for infusions, and the worry of watching for side effects. He has had no physical or cognitive changes in the 9 months since he was diagnosed with MCI due to AD. So we are hopeful he will be a good candidate for Alzheon's pill which could be approved by the end of the year. (BTW, our military secondary insurance did pay most of the balance not covered by Medicare.)

PJ52

My husband did not have that test. But wanted to let you know there are several Leqembi discussion groups on the forum and to suggest you check/post on all of them. Best wishes to you!

allit

https://alzconnected.org/discussion/comment/215762#Comment_215762

my DW had a pTau/Abeta42 and the number is 0.064 which was considered “Abnormal” because it’s greater than 0.028. Her beta amyloid ratio 1-42/1-40 was 0.044 also “Abnormal” since less than 0.058. These were results from the cerebral spinal fluid lumbar puncture.

allit

https://alzconnected.org/discussion/comment/215772#Comment_215772

thanks for posting about Alzheon. i wasn't aware of them. here's a link to their products in development https://alzheon.com/pipeline/

makking

https://alzconnected.org/discussion/comment/215772#Comment_215772

Thank you for the update. By the time we were able to have a real discussion with our neurologist in early May, she shared with us that, because my DH is APOE 4/4, and that he is considered past the MCI stage, the Leqembi was contra-indicated and that it actually potentially escalates the progression in early-onset AD, which is my DH's Dx. I hesitate in saying that, because that might not actually be some people's experience, but it was a relevant piece of information that helped us make a decision that felt right for us.

However, we have found that a combination of Lexapro and Namenda, along with his innate tendancy to keep himself physically and mentally challenged, appears to have given him (and me) some physical and cognitive stability for now. It seems that most of the available "new" options are most effective for PWD still in early stages?

So much of this year has been fraught with appointments, tests, diagnoses, new meds, meds adjustments (including a jolting experience with steroids after poison ivy exposure), learning, planning, working through insurance and disability (not yet Medicare-eligible), planning, re-adjusting expectations, acceptance and all The Things in this new "adventure". For just this moment, we are taking the opportunity to just live, feel "normal", take our planned trips, and not think so much about the future. We know it's there. We're just trying to not live in it.