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Saturday, March 26, 2011

Aricept - Aricept 23 and My bvFTD - Update 2

More about Aricept (Donepezil) 23, the benefits, and my side effects.

“The reason people find it so hard to be happy is that they always see the past better than it was, the present worse than it is, and the future less resolved than it will be”     ~Marcel Pagnol

"How poor are they that have not patience! What wound did ever heal but by degrees?"    ~William Shakespeare

First a short review from my previous post about taking Aricept . I started taking Aricept (Donepezil) 5 mg on September 13, 2010. I increased the dosage to 10 mg after about 6 weeks, and on December 13, 2010, I increased the dosage to 23 mg. My Neurologist is very supportive of this treatment, and reports having very good results in other patients with FTD.

Though not approved for use with bvFTD, Aricept is frequently prescribed off-label. It has a large enough effect on cognition that it is a highly sought-after drug by students taking exams such as the BAR, or Medical Boards. Well, if the wannabe doctors are taking it to help pass their exams there is probably something to it. That is worth more than a pill manufacturer's advertising any day.

For the first few days at the lowest dosage of 5mg I did not notice any side effects, or any improvement. Then I developed a sore throat, and a head cold. This actually may have been a side effect, but there is really no way to tell. By Thursday I had insomnia, and nausea. These are definitely side effects of the Aricept. Though I did not seem to have any adverse behavioral issues, I did have some gastrointestinal problems when I increased the dosage to 10mg. The most bothersome of which eventually was heartburn. The insomnia was not too bad to cope with, but the itching was horrible, and almost caused me to discontinue taking the drug. It started suddenly on the bottoms of my feet one night, and then got worse. Much worse! I cannot express in words how severe the itching was - think poison ivy on top of mosquito bites... and add a few chiggers! Then multiply by two! Everywhere! It moved around. Then, after a particularly uncomfortable drive back from chasing Elk around Pennsylvania, the itching abruptly stopped. So far it has not recurred, but it was a miserable couple of weeks.

Overall most of the side effects lasted about 6 - 10 weeks after each dosage increase, but were considerably more manageable near the end of that period. There may still be a little nausea and insomnia now and then, but that may have nothing to do with the Aricept because of some other medications I occasionally take which also can cause both nausea and insomnia. In any case it does not happen often, doesn't last more than a few minutes, and is not severe.

So, back on December 10, 2010, with the support of my neurologist, I increased the dosage to see if I could tolerate the higher 23 mg dosage of Aricept without having a return of the adverse side effects. It is now the end of March 2011. I have been taking the higher dosage Aricept for more than 12 weeks, and "Yes!" - there are side-effects!

Just like when I first started taking Aricept, I got sick again. I had Strep Throat, and then a couple of head colds. I have a runny nose most of the time - kinda like a slight case of hay-fever, but no sneezing or itchy eyes. The runny nose is listed as a pretty common side effect, so is to be expected. I mostly felt pretty lousy for about 5 weeks catching one thing after another, and still have a slight cough. I even got a skin infection on my nose that lasted a full 2 weeks. Looked pretty awful, but was nothing serious. It is finally healing, and should be gone in another few days. It seems that Aricept really gives your immune system a challenge fighting off infections of any kind. I have had more sickness in the past few months than I have in the past 10 years.

I also have the same gastrointestinal problems with the Aricept 23 as when I first started taking Aricept 5mg, but the nausea is not as severe, and the rest is worse. I don't want to dwell on it, but constipation and diarrhea can occur all in the same day, or for a few days at a time. Sometimes unpleasant, but something I can tolerate. It is getting better, but is still unpredictable.

For a couple of weeks I had some pretty bad incidents of vertigo. The worst was one morning when I actually fell down in the shower. How trite is that? At least I didn't break a hip or anything. I just got dizzy, grabbed onto the sliding door of the tub for balance, and gradually blacked out and slid-half-fell into the tub as the shower door rolled open. OK, so maybe it wasn't the best thing to grab on to, but it was all I had within reach at the time. I was a little sore the next day, but not bruised. It shook me up though, and made me very careful. At least a couple other times I had to sit down, or fall down. I spoke to my Neurologist about it on the insistence of my then girlfriend (actually, she told him all about it), and his advice was, and I quote, to "Be more careful!", and "don't worry! It will go away." Gotta like that guy ; )

Another side-effect is blurred vision
. This is rather subtle. I noticed it when I increased my dosage to 10mg because one day I walked outside onto my deck, and the morning was clear. Everything looked sharp. It was then that I realized that I had been having blurred vision, and just didn't notice it. Well, I have it again with the 23mg dose of Aricept. It isn't very bad, but when I am driving, the street signs are a little blurry and harder to read. This is already getting better, and may be completely gone already.

I forgot to mention, I have also gained about 10 pounds since I started taking Aricept. It seems that no matter what I eat, and even if I severely cut down on my calories, I cannot seem to lose this extra weight. Both "Weight Gain", and "Weight Loss", are listed as known side-effects of taking Aricept, so my guess is that my weight gain is related. I have also been taking Ibuprofen, and that can cause a weight gain also, but my best guess is that it is the Aricept. Though I am still at an acceptable weight for my height, I don't like the extra pounds around my middle. But hey! Even though my brain is turning to Lime Jello - I am still "lookin' good"!

According to the research I found, the biggest problem with taking Aricept with bvFTD is the possibility of it making the behavioral symptoms worse. This is difficult for me to evaluate in myself, but I may notice a slight increase in some of my behavioral symptoms. I think I may be having even more difficulty than before initiating actions which translates into just "doing stuff", or getting things done. I am even better than before at procrastinating. Thinking about doing something is just as good as actually doing it. Part of the symptom is that I am happy not doing stuff, so though frustrating after-the fact sometimes, it hasn't been horrible. I still manage to go shopping, and pay the bills on time ...mostly. My attention issues may also be slightly worse. Of course, that may all be due to the normal progression of my disease. There is no way for me to tell for sure.

So, except for some insomnia, and gastrointestinal distress occasionally, I think I am doing well taking the Aricept 23. Some may ask, "Why put up with all the discomfort?" The answer is that for me the benefits far outweigh the minor inconvenience of the side-effects.

As I mentioned in my earlier post, some beneficial changes in me that I and others have noted in the first 12 weeks when I started taking Aricept included: being able to do mental math again, not using a daily to-do list, quicker thinking and speech. I am generally more like my "old self".  All of those benefits have continued, or even improved with the increased dosage.

I still don't really have too many ways to objectively evaluate any benefits. I can still say that without a doubt I feel like my thinking is sharper, and my cognition has improved. Subjectively I think I have seen a huge improvement regarding my Dysexecutive Syndrome, and maybe a slight improvement in attention. As I recounted in my earlier post, the only objective test is that I can now add a couple numbers in my head, and do other mental math. The example I gave then was: "I was at a store a couple days ago, and as I was being checked out I was adding the stuff up in my head as it was being tallied into the cash register. When the total was given, I was confident enough in my math capability to question it because it was about $22 higher than what I had added it up to be. I was right! I had been double charged for a bag of a hundred wine corks!"

Additionally, I was out counting frogs again last week. It is finally Spring, or it was there for a few days at least, and the frogs were happily singing. At the end of the count, I tallied up the sheet. My friend, whom I have been counting frogs with for the past 10 years was astounded. According to her, last year I was unable to tally up the count sheets at all, and had great difficulty with even the simplest arithmetic. I zipped through the sheet easily last week totaling the counts. It seemed effortless to me, and I loved it! It made me feel really good to see such a positive change.

I could not add up the tally sheet a year ago, and another person also noticed the change! So, in my opinion, Aricept is helping. Aricept is helping a lot! I am also still taking a couple of herbal supplements as well, specifically Ginkgo and Melatonin. I strongly believe that the combination of the Ginkgo and the Aricept is having a huge impact. The two have been shown to interact in numerous studies, and as soon as I started taking the Ginkgo Biloba I noticed an increase in the effects of the Aricept. Of course, it may also increase the adverse side-effects. Maybe it is a coincidence... if you believe in that sort of thing. I take 120mg Ginkgo Biloba in the morning and again at night. There is more about  Ginkgo Biloba here.

But remember, all of that is just a bonus. I am not taking Aricept to improve my FTD symptoms. My purpose in taking it is to slow or stop the progression of my bvFTD. If I can gain even a couple years any nasty side-effects (except the itching!) would be well worth it. Unfortunately there is no way I can think of to objectively measure if it is working to slow the progression or not. Only time will tell.

 So, I am going to continue taking the Aricept 23 as long as I can afford it - it is expensive even with my current insurance - and there are no other adverse effects. I am also going to continue to explore other options such as Alternative Medicine, and Namenda (Memantine) in the coming weeks.

Everything here is my account of what happened to me, or my interpretation of stuff. Every case of FTD is different. Keep in mind as you read this that the person who wrote this has Frontotemporal Degeneration. That would be ME.  Medical Disclaimer.

Questions and Comments are welcome.


  1. I can just say that my father has taken then 0,5mg Aricept for 2.5 years and is doing so well on it...that I cannot imagine anything better. He remembers things and knows how to pack out the dishwasher - and LEARNS new stuff. How can that be?? Obviously we have the not-knowing of the past etc but at least he has his life in order now. and I can only say it is from our care and from Aricept!

  2. We never had any of the high-tech scans or anything but we knew the big Alzheimers was there. I think we are a bit surprised to see him now Learning New Things and living in a new environment since his wife died... which makes me wonder what he Actually has?? It is an on and off-situation where lots of the past is remembered and all I am so grateful for is that the dear chap sleeps long and well and is always so "gentlemanly" as he always was - ie NO character change here despite Aricept and other heart-related drugs that we are giving him...

  3. Any news on Krill oil for FTD?
    I read that it can pass through the blood/brain barrier and maybe...