One Year Evaluation Showed in Improvement in AD Symptoms

Elizabeth607

My DH was diagnosed on January 25, 2024 as having AD after cognitive testing, testing for ApoE4 and a PET Scan revealing amyloid plaque. He began taking Donepezil 5 mg 1 x/day in September 2023, which was upped to 10mg 1 x/day in October with Memantine 5mg 2x/day added. On February 28, 2024 he began Leqembi infusions and completed his 15th injection on Monday of this week. He also has ADHD of which he has been taking Nuvigil 250 mg daily for many years for ADHD. Insurance did not approve the continuation of Nuvigil and it was substituted with Adderall per the Neurologist. He began taking the Adderall end of July 2024. Last month I began to notice and mentioned to him that I think the Adderall is making a difference. He seems more "there/here." Yesterday, he had his 1 year evaluation. All of the testing scores, memory, etc. were improved prior to the original testing a year ago. His overall cognitive score rose from 87 to 98. The Neurologist exclaimed that this doesn't happen with AD and as such, stated that the Leqembi is making a difference and to continue treatment. While it is possible that all treatments/Rx combined may have helped to slow the progression and/or minimize the symptoms, it seems to me, the addition of Adderall made the noticeable difference. Could this be just a fluke, over stimulation caused by Adderall and once it has been in his system for a while, the "improvement" will disappear?

My DH was a MD in Family Practice. We do discuss AD, he knows he has it. His Mother had dementia and his older brother has dementia. They were never tested to determine if their dementia was caused by AD.

Does anyone have any thoughts on this? Thank you in advance.

mrahope

Hmm. First, any improvement that you and your DH see is something to be treasured and I hope you both make the most of it. FWIW, when my DH was first evaluated for memory issues, the neurologist said that some of the symptoms he was having could have been possibly caused by ADHD. However, DH was never diagnosed as having that. Maybe some of this symptoms/issues of early dementia and ADHD overlap? Just my .02.

Elizabeth607

https://alzconnected.org/discussion/comment/223284#Comment_223284

Yes, we were so happy last night. The Neurologist said that ADHD certainly was in the mix regarding AD. I guess it could be his AD wasn't that far along, but the treatment for the ADHD wasn't sufficient…. Thank you.

allit

Was his ApoE4 test positive for increase risk of developing AD? Did your husband notice the improvement after he started the Adderall or does he feel the same? My wife is about to start Leqembi in October. She tried donepezil but had side effects. The neurologist switched her to rivastigmine. She doesn’t notice any improvement in her focus or concentration on that. She doesn’t have an ADHD diagnosis but I’m wondering, in general, if Adderall would help?

M1

I would bet it's the adderall that's helping clinically. Important to remember that Leqembi has not been shown to improve existing symptoms--just to modestly slow decline. That's an important distinction.

Some geriatric psychiatrist s I know have used stimulants like Adderall or Ritalin in the elderly to maintain alertness, but this is definitely an off label use. I don't know that insurance would cover without a clear indication, and there are known risks for vascular events and insomnia.

Elizabeth607

https://alzconnected.org/discussion/comment/223289#Comment_223289

Yes, he was positive for the gene. My husband said he thought he was better after starting Leqembi, but I didn't really notice difference. He hasn't had any side effects from the Rx and so far no brain bleeds from the Leqembi. "I" noticed a difference when he was changed to Adderall for his ADHD. He is communicating and remembering better, not perfect, but better.

Elizabeth607

https://alzconnected.org/discussion/comment/223290#Comment_223290

Thank you, M1. His insurance does cover Adderall not Nuvigil. Apparently, Nuvigil is for sleep disorders of which he is not being treated. I agree with you, I think it was the Adderall that caused the change-not sure why the Neurologist did not agree…….well, in reality I probably do. I really didn't really see any noticeable change (better or worse) in him since he began Leqembi.

Iris L.

I wondered if I had had undiagnosed adult ADHD, but I didn't have ADHD symptoms as a child. I could tell specifically when I noticed my symptoms beginning at age 36.

Many times I felt less alert, this was attributed to sleep apnea. I tried Provigil, I did not notice any difference. I am still working on my sleep disorder, which is separate from sleep apnea.

It's great that he is improved. I am improved. I know I will never be like I was even 20 years ago. I just want to be functional. I hope he stays functional. Keep up the good work!

Iris

Elizabeth607

https://alzconnected.org/discussion/comment/223297#Comment_223297

Thank you, Iris. I hope the same for you! He was diagnosed somewhere in his 20s. This was 45 to 50 years ago.

harshedbuzz

@Elizabeth607

That is an encouraging report regarding your DH's most recent testing results. You might not ever get a final answer regarding the bigger benefit; it could be the result of them working together.

Does the Leqembi work over time causing it to be more effective with a year's worth of injections? Or is it the result of the first injection what one can expect going forward?

I have a couple of very dear-to-me ADHDers in my life— a son diagnosed at 7 along with ASD and anxiety, a niece diagnosed after she moved in with me in her 30's and I sent her to see DS's psychiatrist and my mom whose psychiatrist agreed with my assessment that she brought the ADHD to the family picnic.

Niece and DS did exceptionally well on Adderall. For both, it helped with focus and executive function which might be what you're seeing. Both moved onto Vyvanse when Adderall became hard to find. She likes the smoother taper as it wears off. I find my son, especially more engaged and aware of what's going on around him when medicated. I could totally see where a PWD in the earlier stages— with considerable cognitive reserve— benefiting from that extra help.

Mom's on the wait list for the memory clinic scheduling because of recent word-finding and memory glitches so it's kind of hard to know how much is ADHD and how much is cognition as there's so much overlap. At 86 with a host of medical issues, she is not a candidate for stimulant medications. Mom also has narcolepsy and took Ritalin for a long time which I think masked many of her ADHD symptoms.

HB

Elizabeth607

https://alzconnected.org/discussion/comment/223315#Comment_223315

Thank you. I guess time will tell….*sigh* We are living in the now. So if it's working now, it's a good thing.