Memantine

Care4Hubs

My husband’s doctor recommended Memantine. (He called in the Rx, but I have yet to pick it up….) Has anyone had any success/issues with it? I saw a post from a few years ago that didn’t sound promising from the few responses that I read. I am wondering if anyone has any other experiences to share.

Elshack

My DH was on Memantine for a few years and it seemed to help..that is the progression of Alz didn't seem to be as fast. Aricept made him have terrible diarrhea but memantine didn't. I definitely would try it if I were you . My Dh's situation was different as he fell and developed brain bleeds and had to have brain surgery which caused his dementia to enter a moderate stage. I would go by your husband;s Dr's suggestion. My DH's neurologist suggested it and I personally thought it bought us a few good years by slowing down the progression. Of course there is no magic formula . My husband was diagnosed 7 and 1/2 yrs before he passed away. He was 93 and 1/2 and died last Nov. If I had to do it all over again I would still have him take the memantine. I hope this helps you make your decision.

Care4Hubs

https://alzconnected.org/discussion/comment/222014#Comment_222014

Thank you.

Crkddy

Yes, you should give memantine a try. It doesn't slow the progression, but it does improve behaviors in many cases, including my own wife's. If he responds positively, then keep him on it for as long as you are able and be cautious of advice you receive to the contrary.

ricardo

https://alzconnected.org/discussion/70548/memantine

I’ve been using (2x) daily for a month. Seems to help no side effects

ImMaggieMae

My DH started taking Mementine about 3 years ago, 10mg per day. I didn’t see much difference. About a year later his neurologist increased the dose to 10mg twice per day. This made a big difference. It brought back his empathy which had been almost nonexistent for about a year. Now, a couple years later in stage 6/7 his empathy is still very much intact.

SDianeL

my husband was on it for 3 years but I didn’t see any difference. The Neurologist it might help him focus. I still gave it to him as no side effects.

annie51

My DH has been on it for several years with no side effects. I can’t say for sure it helped slow the progression but he was pretty good for a few years so maybe it did. His PCP said their patients have more problems with Aricept than memantine.

Maru

My DH was started on and the day after he reached full dosage, he started wheezing. We took him immediately.

terei

Don’t ‘not’ try meds by someone else’s experience. There is nothing to lose at this point. If your LO has unwanted side effects, then you go from there.

ImMaggieMae

It’s interesting that in preliminary talks with hospice that Memantine was the one thing he takes that they would want to wean him off of. An antipsychotic and gabapentin they said could be continued because they fell under comfort care. But memantine apparently treats the disease. I’ve never heard of anyone being cured by it, so in my book it’s still comfort care since the empathy seems to make him feel better. Or at least his empathy makes me feel better. That is a deal breaker for me for going on hospice. As nice as it sounds for some of the physical equipment for moving him when needed, or providing incontinence supplies and help with showering and such, his meds seem to be doing as well as could be expected at this point. So we’ll go it alone here at home until the very last stages I guess.

Bob in LW

https://alzconnected.org/discussion/70548/memantine

My life partner is on Memantine, which was prescribed by her Neurologist. It's difficult to determine how much it helps, because we have nothing to compare it with. I think that it's better to take it than not, and we haven't noticed any side effects.

JJ401

DH has been on it for a few years. Side effects have not bothered him.
Cost can be a factor. At the local pharmacies it was not cheap (even with his pard D prescription insurance). We got it locally for about a year and then found Cost Plus drugs. We now mail order it from them very reasonably (about 10% of local pharmacy cost for us).

I highly recommend CostPlus Drugs. It’s a little more work, but the savings, in my opinion, are worth it. First you need to set up the account using your email address. Then print out their firm and take it to your prescriber. They fax it in.
They will give you how many refills your prescriber orders. So if you have three refills, you get three refills. They are not automatic. You have to log in and order each time. When your refills end, you have to contact the prescribing doctor, as they don’t. The doc faxes it in again. Just be sure they put your email on the fax as that is how they keep track of orders. A little more work for me, but 90% savings.

ImMaggieMae

https://alzconnected.org/discussion/comment/222250#Comment_222250

GoodRx is another lower cost service for prescription drugs. Every pharmacy has different prices under GoodRx, you can check online. But it is almost alway cheaper than my insurance copay, sometimes almost half the cost. For 180 tablets (90 day supply) it’s about $26 at the local pharmacy we use.

midge333

https://alzconnected.org/discussion/comment/222246#Comment_222246

It seems like you should be able to insist that he stay on memantine. If the hospice team is unwilling to accomodate you, try asking a different hospice team. It really shouldn't be that hard. Personally, I think it is reasonable to stop the memantine but if it is important to you, hospice should be willing to continue it.