I am counting on Leqembi!
I have had 1 Infusion & my 2nd is this week. Anyone else?
Comments
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My 3rd Leqembi Infusion was yesterday afternoon. I'm hoping to communicate with another receiving Leqembi. I have my next Infusion in 2 weeks & then I have an MRI. I've an appointment with my Neuro team that same week, too. I have noticed that I seem a little less 'fuzzy'. Small improvement? I am optimistic.
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My husband had his first infusion on Wednesday, February 28, 2024. He did not experience any side effects, such as a headache. I think it is too early to see any "difference."
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We are just waiting for the paperwork to be processed, then DH will start treatment. He’s not worried, but I will be on pins and needles, at least til we’re past several treatments.
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How is everyone doing? DH starts in three weeks.
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I'm trying to get my husband signed up. Hope we can get him going soon.
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My understanding is that Lecanemab won’t repair damage already done, but will slow down the progression and more damage. But if it does improve my husband's focus and thinking, that will be icing on the cake.
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Yesterday was his 4th infusion and then a meeting with the Neurologist. It does not appear that he is any worse from beginning the infusions, which could mean that it is working along with the Rx he is currently taking. He is not better, per se, but not worse. The Doctor did not recommend any changes to medication. This morning he had the first MRI after beginning treatment. If we don't hear anything in a couple of days, then we can assume that he does not have brain bleed or any other irregularities. He is still not suffering from any visible side effects other than being more tired than usual on infusion day. He is still primarily independent (stays at home during day while I am at work) but still needs my help (reminders, nudges, prompts, etc) with things that are not routine for him.
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My husband has had two infusions so far. We are grateful that he didn't appear to have any reactions to the process. We are getting the infusions at the local hospital, and he is the first one ro receive Leqembi at our hospital.
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I was on pins and needles before my DH's first infusion. He has now had two infusions and so far so good. I hope you will find the process to be pretty smooth.
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SherryRS, yes he just had his second infusion with no aftereffects at all, not even fatigue. I seemed to relax once we got the treatments started. The nurse told me yesterday they have a lot of patients on lecanemab, which makes me feel better.
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Thanks for that encouraging response. I’m hoping more and more people will choose to try Lequembi. I’m going to try to advocate locally about the infusions.
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You may need to be patient. It took us months to get my DH his first infusion. Good luck!
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Elizabeth607, thank you for sharing your experiences. It is interesting to note your DH seems more fatigued on infusion day. My DH seems energized following infusions, but he’s only had two. Perhaps he is just excited to have the process in place.
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Everyone told us my husband would be tired, if not feeling generally bad, after an infusion. But most of their experience had been with different medications. Like your husband, SherryRS, mine is energized. I, on the other hand, am always exhausted! 🤪😄
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LOL, PJ52, I know what you mean. My DH definitely has more energy than I most of the time. I think I spend more time and energy wondering about the future than he does. But I’m grateful he seems to be just living each day as it comes.
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Husband had the scheduled MRI immediately after his 4th infusion. He was on half-dose infusions to lower his risk of ARIAs. He has had no symptoms, but the MRI showed evidence of several microbleeds, so treatment is paused for now. He will have another MRI (which was already scheduled) in a few weeks.
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I’m sorry your husband has some micro bleeds. My DH had his 5th infusion last week. Again he felt fine and had no reactions. Just the week before he had an MRI. We met with his neurologist today who said the MRI showed some brain swelling. Since my DH is his first patient getting Lequembi the doc is going to study protocols to see how we proceed. He is scheduled for two more infusions and we will see the doc in July to see whether we continue infusions. I am seeing some increasing cognitive issues.
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And I’m sorry that your husband is in this position. Mine is one of dozens (maybe even 100) who have been receiving the treatment, but only a few have the APOE4 gene with 2 alleles like my husband. We will probably hear from his doctor early next week. All this uncertainty, both with the disease and the treatment, is so stressful.
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My husband had his first infusion this week. He was tired the following day, and has had a headache for two days (so far). He did not have the tylonol, steroid, benedryl premeds, as the infusion nurse practicioner said it was optional. He'll try them next time.
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I have had 1 treatment one of the newest treatment. So far so good! I will have them 2 weeks apart.
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One side affect of my first infusion of Leqembi was a raised temperature (100) and 1 small episode of vomiting. Other than that all went well. I will see how it goes on the 2nd dose this Friday.
Sandi Barkan
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Sandra E. Barkan
September 21, 2024
Once more I had my 3rd infusion of Leqembi. ZERO side affects with the this one!!!! YEAH! My 2nd infusion had also been tolerated very well! Yeah!!!
Sandi Barkan
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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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