Stopping Memmatine

Malka

Hi,

My cousin, a cardiologist familiar with my dad's case, has recommended stopping his memmatine. My dad has been on it for over five years, probably more. My dad is having a lot of delusions and is sleeping a great deal. I don't think this medication is helping him if it ever did. There is no way to judge this drugs success as far as I know.

Has anyone else stopped this drug? It's expensive and I don't think it's doing anything.

Thanks in advance for your replies,

Malka

Emily 123

Hi Malka,

Everyone seems to be all over the place with both Arricept and memmatine. You can search the boards by using the magnifying glass in the upper right hand of the page and see multiple threads. Some people see a benefit, some don't, and some folks really have to weigh the side effects against the possible benefits. I think, given the progressive nature of the disease, that it's going to be hard to say for sure. I do recall there was a very recent thread about this, and someone in the responses talked about how the memmatine had adverse side effects. Sorry, I wish I had a definite answer. I'm kind of in the ''can't hurt, might help'' camp, but we're still on Arricept and it's not too $$.

Ci2Ci

From what I've read and on advice from a neurologist who specializes in dementia, it is quite ineffective in later stages of dementia. Perhaps benefits in early stages...for some...for a short while. For my mother, I felt that if it only enabled her to remember some random things occasionally, it wasn't worth any side effects. Even if the only side effect was, say, constipation or diarrhea, that is quite significant for an elderly person with diminished abilities. ...My mother (late stage) was put on both Articept and Mamentine (without my consent) by geri-psych. After 3 months when she finally got into a MC unit, I asked the visiting physician to take her off of it. He agreed and said that it didn't need to be tapered. No after effects were reported. (No benefits were seen while on it.)

Malka

Thank you for your comments. My dad has been on it for a very long time. By the end of the month the doctor and I will have him weaned off. I am weaning him off even though she said I don't have to. I want to make sure he is okay. Now it will be a bit more difficult to see because he caught Covid for the 2nd time.

Yes, he has all his vaccinations. His aide caught it and now he has it. Thankfully it doesn't seem bad. In a few weeks he will get his RSV shot. Then Flu.

Thanks for your reply,

M

Malka

Hi all,

An update to the Memmantine saga, I did see degradation of my father's faculties. I put him back on it and hope that he does get the small amount he lost back. Again, I am not sure if it's from the drug or the Covid. The timing was very bad.

M

Emily 123

Thanks Malka--every bit of info helps others!

SusanB-dil

Hi Malka - we just had a go-round with mementine. mil is still holding in stage 5, albeit thinking not too much longer. Anyway, about 2 weeks ago, we ran out, with her last dose being a Monday morning. Pharmacy was auto-fill, but the 'denied' message was missed. I put through in the health-care portal that day that we needed it asap. Tuesday morning, I called. Tuesday late afternoon, DH called. Told them she was seeing doc on Wednesday. We got "oh, that's the wrong doctor", but we will put through the request. So Wednesday doc also put through as urgent to the 'correct' doc. Finally got it on Thursday morning. DH went to work late to get it back into her system. Yes, we did see a difference! Am putting this out there maybe as a bit of a rant (that we needed the med), but also more of an 'fyi' for others.

I looked it up. Memantine can be beneficial for many - in earlier stages. For about 4-5 years, I think it was. If taken off, then goes back on it, a pwd may not go back to the previous baseline.

Again, this is FYI, but we really did notice the difference. And I think we are still dealing with her being without.

Malka

Thank you for sharing.

My dad wasn't off it totally. His dosage was decreased from 20 mg to 10 mg. So one pill at night. He has been back on the full dosage and I don't see any quick rebound. I do think having Covid made things worse and I do know when he gets sick any faculties that he loses, he usually doesn't get 100% back.

It's all so stressful and scary.

M

ESkayP

My mother started memantine about the same time she moved into the the AL facility. We couldn't tell if it was helping because she was having a rather traumatic transition. After a month, her neuropsychologist increased the dose. That increase is corresponding with her move into the MC unit. I have read through the comments on this thread and wonder if overlaps are ever avoidable. I have been thinking that bad timing was some kind of curse (figuratively). It seems to be a norm in caring for our LOs. I'm recovering from a second bout of COVID, mild this time, but the fever kept me from seeing Mom last weekend. She called me and sounded great. I thought the memantine must be working. That night, she wandered out of her apartment and off the premises. The staff had to go looking for her. That's why she is moving into MC now. The sundowning doesn't seem to be affected by the meds. My mom also suffers from anxiety and hypertension. Her GP added a water pill which helped tremendously and told me to put Mom on a low sodium diet. They did some blood work, and when the results came back, the GP called and said Mom's sodium count was way too low. She then took her off the water pill and put her on something else. It's just the constant rotation of pills and side effects. How is anyone ever supposed to reach stability? I don't know how to function in what feels like constant chaos.

Malka

I truly understand how you feel. I started to take my dad off the Memantine but he got Covid then. Couldn't tell what was making him worse so I put the Memantine back into rotation.

Since Covid again he has taken another slide down. He is sleeping a lot and can't remember his aides name anymore (she has been with him for 2 years). Yesterday he fell because he got up and tried to open the shade himself. He hit his head on carpet, but today seems to be back to his normal. Sleeping and just fading away. It makes me so so sad.

Jessy

Completely understand taking him off namenda. After one year to a max of three, it really doesnt have much benefit. In fact anticholinesterase are detrimental for brain health in the long run. The sleeping a lot might be from low serotonin which is very common in this neurological issue. Also if you can improve his diet to no processed foods at all and check on mitochondrial health. Tons of their decline is due to dirty mitochondria, brain inflammation and brain insulin resistance. Type 3 diabetes. Check to see if his neurotransmitter can be balanced out as well as his hormone levels. Check as well on benefits of methylene blue on small doses. It can be observe under MD supervision. A blood test needs to be done prior to starting medication. He might benefit also from brain peptides, check that as well. Methylene blue has been use a lot by many MDs to care for folks that caught virus, along with infrared light and intermittent fasting and of course an array of supporting supplements such as vitamin D.

My mother is now sleeping very well all night without sleep aids. Great behavior. Eating well. Socializing well. Awareness improved. Also taking different supplements and avoiding all foods from outside. Remember oils take about two years to leave our system, except for coconut, avocado and olive oil, all of high quality.

Its possible to keep relatives with this condition on their best, not only behavior wise but health wise. Its a lot of work of course but totally worth it. Needless to say love is sacrifice.

Wishing you all the best.