tiny/Katie,

You ask very good questions. Your mother's neurologist is best-placed to answer them.

Read over a website such as rxlist.com for the intended benefits of Namenda and its possible side effects. Same thing with Aricept, etc.

I believe that AChEIs are best for mild to moderate dementia...but that's the dementia of Alzheimer's (which your mother may have as well as Lewy Body Dementia). I don't think anything is designed for severe Alzheimer's dementia. Very few of these meds have been tested in LBD. Most of the studies have been posted in the "LBD Research" section of the Forum. Again, the best data is on Exelon, which is FDA-approved for use in Parkinson's Disease Dementia.

And read over what Dr. Brad Boeve has to say about treatment for dementia symptoms in his "Continuum" paper (found by doing a search on lbda.org).

Robin

Thanks. Paper Downloaded- check. I also found these videos on Youtube (affiliated with LBDA). Videos from Dr. Johnathan Stewart. You've probably seen them- I'm a newbie here and don't have a lot of info or experience.

Yep, all the videos are worth watching. I especially like the presentation by Dr. Barnia (sp?). You used to be able to order a DVD of the presentations from the LBDA. You might check on that (but online is easier in many ways).

Just had a conversation with mom. She said "This dementia business; I don't know one person over 60 that doesn't have it in some form. The same thing happened post back surgery and once the muscle relaxer was out of my system, I only had one incident right afterwards." Me: "I agree mom. That's why I'm not sure if Namenda is right for you at this time." She's a former RN. Says she likes the Aricept. I'll call the neurologist and if we have to, I'll just pay the 200 out of pocket and hope she doesn't kill me. I'll check on the Razadyne since Exelon isn't covered. Thank you all- I'm glad I don't even have to imagine what would have been.

Tiny, I'm pretty sure Exelon tabs are covered but I don't see the Exelon patch on the list. Exelon [the patch] helped my husband quite dramatically in the earlier stages of Lewy. I doubt it's doing anything now but his doctors want to keep him on it. [Maybe they'd like to pay for it ]

I called medicare today. Mom has reached gap stage- i.e. maxed out on prescripts and that is why my brother had to pay full price for donzepil. So Donzepil is on the list. My brother just said something happened with insurance. I guess I need another list- Medicare prescription questions. Thanks!

Mockturtle,
I thought maybe I could call mom's neurologist and see if he would let me come in and file papers or answer the phone in exchange for answering questions etc.

OK, you've hit the donut hole. That makes sense. Any of these meds -- Aricept, Exelon, Namenda -- would cause someone to hit the donut hole as they are all expensive. (Except maybe through the VA.) Since these are standard meds for those with Alzheimer's disease, it was hard for me to believe that they wouldn't have been on a formulary.

As of 1/1/11, your mother's prescription usage resets to zero, so you should be able to get Aricept, Exelon or Namenda. If/when she hits the donut hole again, you can try asking the MD for samples.

Remember that Razadyne is already generic, and Aricept will be generic in May (I think).

Robin,
Yes, thanks for the clarification. I'm going to also check into medicare's right source mailing of prescriptions-there was suggestion that it would save money. Based on previous posts, I'm also researching the AChEIs along with Boeve's research. I have the Namenda samples locked up for later; hopefully much later.

Briefly spoke to mom's neuro yesterday and we are beginning Namenda today. She's had stomach issues and wasn't eating very healthily. He stated the drug attempts to slow the death of nerves; why wait until her dementia is worse? I asked about the effectiveness- 3 or so years and he said not to worry. So, we'll see. He's been on target previously and I've researched some. Hope there are no regrets.

Just had to discontinue namenda, my hb is one of those who become more confused when taking it. We had several scary episodes since starting last weekend, and it's clearly not for him. Glad we tried, though.