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Friday, October 29, 2010

Aricept - Aricept and My Frontotemporal Dementia (bvFTD) - Maybe?

Aricept is not approved for bvFTD, but it seems to be helping me.

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 dementia. That would be ME.
Medical Disclaimer.

I did the research a few weeks ago, and I do not know which web site I copied the following information from. If you did not grow up in or around Cleveland, Ohio that would be:

 "... from which I copied the following information." We really do go out of our way to end sentences with prepositions, no matter where we are going to.

In any case, the following information is widely available on the net.

Medications with strong anticholinergic effects, such as antihistamines that cause drowsiness, are well known for causing acute cognitive impairment in individuals with dementia and may cause confusion and hallucinations. Furthermore, with the cholinergic deficit in some forms of dementia, they could potentiate this deficit and antagonize any cholinesterase inhibiting medications.

Cholinesterase Inhibitors:
These drugs have been approved by the FDA to treat mild to moderate Alzheimer’s Disease. The drugs in this class include donepezil (Aricept), approved in 1996; rivastigmine (Exelon), approved in 2000; and galantamine (approved in 2001 under the trade name Reminyl and renamed Razadyne in 2005).

Cholinesterase Inhibitors are designed to increase the level of acetylcholine in the brain. Acetylcholine is a chemical that helps to carry messages to other brain cells. It is important for memory, judgment, and thought. This class of medications may help with naming in primary progressive aphasia, but can worsen the social disorder of patients with FTD.

OK, I told you that, so I can tell you about this.

Aricept is not generally recommended for anyone who has bvFTD. It is only approved for Alzheimer's Disease, not Frontotemporal Dementia. The brain chemistry is very different between Alzheimer's Disease and Frontotemporal Dementia. Aricept is not approved for Pick's Disease (FTD). The reason it is not approved is because it can make behavioral and aggression problems much worse in those with FTD. So, the general wisdom at this time is: Do not take Aricept if you have bvFTD.

But every case of FTD is different, and my Neurologist agreed that I may benefit from taking Aricept. Surprise!

I have been taking Aricept (5 mg) now for about 6 weeks. The side effects are uncomfortable, but not insurmountable. Supposedly the side effects will go away within a couple months when my body gets accustomed to the medication. I hope so. After the horrific side effects I had taking Lexapro I am very cautious about taking any new medications.

The first week taking Aricept was easy with no real side effects at all. I thought I was going to be lucky, and not have any problems. I saw no benefits either.

The second week was not so very good. The most common side effects are gastrointestinal. Well, that is where some of them manifested themselves with me. I kept notes on my daily calendar, so I wouldn't accidentally forget something.

Around the beginning of the second week taking Aricept I started having pretty severe heartburn, and acid reflux. My indigestion was mainly at night when I was in bed. That is probably because of the position. It did not seem to matter what I ate. I know I had indigestion at night because another side effect of Aricept is insomnia. I frequently awake around 3 Am, but this was much worse. I was able to fall asleep, but was awake a couple hours later, and I was unable to fall back to sleep. I did not feel especially tired the next day, but I was only getting 3 or 4 hours of sleep a night. Of course, frequent urination is another common side effect, so I was awake anyway several times a night.

But wait! That's not all! I also had decreased appetite, and on a couple days all I had to eat were a few light snacks. I also had a feeling of being sorta "Fuzzy" in my thinking. It is hard to describe exactly, but it was somewhat like having one too many Rum & Cokes. It wasn't unpleasant, but it was noticeable. Along the same lines I had waves of intense nausea. It felt just like a mild hangover. The feeling of nausea came on suddenly, and did not last long. At least a couple friends commented that they noticed my "fuzzyness", so it was not just my imagination.

The beginning of the third week was about the same as the second. The insomnia and the indigestion were starting to become bothersome, but still manageable. The nausea was not as bad. I had a stuffy nose which may be due to the Aricept, or may just be allergies. No real way to tell the difference.

By the end of the third week I was ready to stop taking the Aricept altogether. I itched! Not just a little bit. One night it was the bottoms of my feet. I itched, and scratching didn't help. There was nothing there. No bug bite. No mites.  No rash. No redness. Nothing. Just an intense itching. It was the worst on my legs, and my arms, and my chest, and around my middle. I noticed it the most at night, but I itched all time.

Oh! Did I mention the muscle cramps? In the middle of the night, when I finally did manage to fall asleep, I would wake up with severe cramps in my legs, or my shoulders. Think "Charlie Horse!" I have even had cramps in the muscles of my hands. The cramps also started around week three. I never had a cramp in my shoulders before. That was a new experience.

I didn't notice it, but I also had slightly blurred vision. A couple days ago I walked outside to enjoy my morning coffee and a cigar under the guyzebo on the deck. The sun was shining, and all of the leaves on the trees looked sharp. The whole world looked sharp and clear. That was when I realized that my vision had been slightly blurred for the past couple of weeks. It was a subtle change, but it was noticeable when it was gone. The important part is that it is gone. My vision is no longer blurred - at least no more than it ever was.

So! About now you are probably thinking, "Why is he taking this crap?"

Simple. The benefits may outweigh the drawbacks. The light at the end of the tunnel is that with Aricept the side effects supposedly go away in 4 to 6 weeks. But it gets worse before it gets better.

Around week 4 I went on a vacation. I was way out in the wilds of Pennsylvania chasing Elk, and generally having a wonderful time. I took a few antihistamines because I had a stuffy nose. Again I wasn't sure if it was a side effect, or if it was allergies. I decided it was allergies because the antihistamines helped. I also noticed that when I took the antihistamines, I did not itch as much. Woo-Hoo! My friend also suggested I try a bath oil, and that helped immensely to relieve my itchiness.

By week 4 I still had a little insomnia, but most of the other side effects were gone, or reduced to a sporadic infrequent occurrence. All except for the itching! It was crazy. It seemed to move around. It was driving me crazy! On vacation, it was the back of my neck! Again, it was worse when I did not take an antihistamine.

When I got home my allergies were worse. It is the Hay Fever season in Ohio, and there is plenty of Ragweed around this year. Ragweed is evil! Of course, as always in the Fall, I started taking antihistamines on a regular basis. Just for the record - I have always had very good allergy control with Chlortrimaton, so that is what I usually take. Nothing like an old-school medication. The upside is that it is unlikely that it will be pulled off the market next week because it turns you into a lumpy green squash.

Did you read the part at the beginning of this post about dementia and antihistamines? Just in case you missed it here it is again:

Medications with strong anticholinergic effects, such as antihistamines that cause drowsiness, are well known for causing acute cognitive impairment in individuals with dementia and may cause confusion and hallucinations. Furthermore, with the cholinergic deficit in some forms of dementia, they could potentiate this deficit and antagonize any cholinesterase inhibiting medications.

Did you notice that Aricept is a Cholinesterase Inhibitor?

Recipe for disaster! Week five is missing. I wrote about it a little in another post on "Bad Days", but I really don't remember any details. I learned that it is a really bad idea to mix antihistamines with Aricept. Antihistamines alone may cause issues, but the two together can have severe effects. I guess I will have to suffer through allergy season, or maybe try some other medications.

I stopped taking the antihistamines. I got better. Now, it has been six weeks since I started taking Aricept. All of the side-effects have decreased, so that they are not an issue - except for one. I still itch! It is not as bad as it was, but it is still annoying. The bath oil is the biggest help. It is mostly on my chest, or the back of my neck - but it moves around.

(I am still working on this post, and it is now week 7 since I started taking Aricept. I think that I am finally over all of the side effects - even the itching. It was very difficult at times.)

After all that I have still not answered the question, "Why am I taking this crap?"

In a study of patients - very aged patients I might add - with Alzheimer's Disease - Aricept helped them perform everyday activities longer. Aricept may improve the symptoms of dementia, stabilize the symptoms of dementia, or slow the progression of the symptoms of dementia.

Again - Aricept is not approved for patients with Frontotemporal Dementia (FTD) - especially not for Behavioral Variant Frontotemporal Dementia (bvFTD, Pick's). Aricept is only approved for people with Alzheimer's Disease.

According to eHow: "Aricept improves the function of nerve cells by reducing the breakdown of acetylcholine. Acetylcholine sends messages to the nerve cells involved with the cognitive skills of memory, thinking, and reasoning. By reducing the breakdown of acetylcholine, the progression of symptoms slows. Because Aricept works differently in patients, some patients will show increased cognitive ability while others will not seem to show any change."

My explanation is that if you have bvFTD, and have behavior problems, Aricept will make 'em worse because it makes the brain work better and faster. It even makes the parts work better and faster which are causing the behavior problems. If the parts of the brain which are causing the problems work better the problems will get worse. Hence Aricept is not recommended for people with FTD. That is my own explanation of what is going on.

But... Aricept makes the brain work better.

Everything is a trade-off. Every case of FTD is different. In my case my neurologist and I both thought that Aricept might have more benefits than drawbacks. So far I will have to agree now that the side effects have mostly gone away.

My main behavioral symptoms do not seem to be any worse. I have not had any incidents of rage or uncontrolled anger since I started taking Aricept. I have not seemed any more aggressive. Other than the week I mixed Aricept and antihistamines I have not had any adverse dementia-related effects.

My neurologist hopes that Aricept will slow the progression of my symptoms. That is his reason for recommending it. It may, or may not, have an effect on the progression, but in his opinion if I can tolerate taking it, there is no downside.

I personally am hoping for more than that. I feel sharper in my thought processes. I think I have also seen some benefit to my working memory, and possibly attention. I have had 3 (count 'em! Three!) people tell me that they had noticed I seemed sharper the past couple of weeks, and 2 did not know I was taking a new medication.

As an example: I had a friend send me a cartoon about being a geek if you think doing math in hexadecimal is attractive to the ladies. Well - of course it is, but that isn't the point. The point is that there was a simple arithmetic problem, and I was able to do it in my head. Not just arithmetic, but hexadecimal arithmetic. That is more like my old self than I have felt in a long while.
(1A + 2B = 45 for the curious)

I played a game of Cribbage last evening, and was able to count the scores up in my head. I think that is a big improvement in my mental arithmetic ability.

I am going to try to continue taking the Aricept. My regular doctor agrees with my neurologist that it is worth trying if it seems to help. I will probably be increasing the dosage to 10 mg a day around the beginning of November. Hopefully I won't itch!

Maybe it is just a fluke, or maybe it is coincidence (if you believe in that sort of thing), but I am pretty sure right now that Aricept is having a beneficial effect. No way to tell if it is slowing the progression of my symptoms, but I can hope.

There is always hope.

Comments are welcome.


  1. 1) I love you daddio
    2) the new site layout looks good
    3) glad you stuck with it. I kno you're tough and didn't have to try the new meds, but I'm with you on the why not give it a shot thing. Hopefully the benefits outweigh any issues and the side effects subside completely. It was great seeing you and the krooooooozer!!

  2. Thanks for the comment, Ian.

    I wanted to make the center text section of the page wider, and needed to change the basic layout to do that, so as long as I was tweaking it a little I decided to tweak it a lot; )

    I think all of the side effects are gone - at least for now. Yay!

    I love you right back, Thing One. Kroozer is doing fine.

  3. I agree with Ian on all counts. I don't know if I told you at the time, but you tried to do some simple math in your head when I was there a few weeks ago and you came up with the totally wrong number. I am SO happy to hear about your math skills coming back! Because I don't see you often, I don't see changes the way some others do, so that one really stood out for me.

  4. I really like your site. Excellent content. Please continue posting such profound content.