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 question about cholinesterase inhibitors (e.g. Excelon) 
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Joined: Mon Oct 16, 2006 12:26 am
Posts: 2
Post question about cholinesterase inhibitors (e.g. Excelon)
Hello all.

My mother was diagnosed as having LBD exactly 1 week ago after tests with a psychologist (ordered by new neurologist). The follow-up with the neurologist was today. I'm thanking God for this forum and for the yahoo groups and everyone who has been so willing to share their experiences. I've been reading them as much as I can for info and was able to discuss things with the doctor today in an informed manner.

He prescribed Excelon and ordered a PET scan. He said to keep taking the Effexor 75mg for now -- which was the result of the FIRST round of testing done 2 years ago, nothing further done for her. Was told depression causes "these types of symptoms". A sort spot with me.

My question is, how long before you saw an improvement in your LO when using cholinesterase inhibitors such as Excelon? I can't recall reading about that in particular, but I do feel overwhelmed with info and may have missed it.

Thank you for any help,
Mae


Wed Oct 18, 2006 4:59 pm
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Joined: Tue Sep 26, 2006 5:13 pm
Posts: 18
Post meds
I don't have an answer but let me tell you.....It pissed me of to be told my mom was depressed . She has been told she was depressed and that was the problem. Uh...helllloooooooooooo. she shuffles and falls flat on her face......r u gona blame that on depression too?
Ya, I know exactly what your saying. I try to explain to her doctors that if i was falling all the time, wetting my pants and getting confused, I would be depressed too! I try to remind them, nobody ever expects to go through the "golden years" like this. :cry:
Few, that felt good. :D
she has been on cinimet and frankly I don't see alot of change....it has been a month. The neurologist expects to start excelon next month. he doesn't want to start both at the same time


Wed Oct 18, 2006 5:30 pm
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Joined: Mon Oct 16, 2006 12:26 am
Posts: 2
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Hi Maureen,

I understand exactly what you're saying. I made the same comments, "Of course she's depressed! But, what is going on?!" She was so upset about being forgetful and confused, plus her best friend had just died. But, I was convinced her condition wasn't about simple depression. Well... you can imagine. Ugh.

The only thing positive I can say about the previous psychologist is that he told her she shouldn't try to drive anymore because she "couldn't process what she sees." He got that from his testing of her, but still would only say "depression" and nothing more came of it. Still, at least we had an easy excuse to get her to stop driving. *whew*

What is "cinimet" for?

_________________
~Mae
Daughter of Betty (68y) - dx of LBD on 10/11/06 with obvious symptoms as far back as 2003, possibly even 2000. Started rivastigmine (Exelon®) on 10/18/06. (First round of testing in 2004 resulted in dx of depression, nothing more.)


Wed Oct 18, 2006 11:03 pm
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Joined: Sun Oct 01, 2006 1:16 am
Posts: 5
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People on the Yahoo LBD discussion group mostly have quite positive things to say about Exelon. My LO tried it 3 years ago, lots of nausea and some vomiting. But there has been a recent research study which came back as positive as anything for this #$%^& condition. She's been on Aricept for quite a while, and I'm sure any effect has long since worn off, but several of the MD's I've tried all say to stay on it. So we're going to try adding Exelon. OUr neurol said it is tasteless and could be added to food. She's starting LO out with .75 2x day, so that means half a capsule at a time. We'll see.


Fri Oct 20, 2006 5:43 pm
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Post 
Dear Joen,
Exelon is a very hard drug for some, we also had many issues with it but starting slow and small amounts did help a great deal, I think in the end my Husband was on 12 mg a day!


Sat Oct 21, 2006 8:48 pm
Post 
Dear Maureen,
Depression is very common with LBD, my husband was labled depressed for yrs before formal DX of LBD and it ticked me off too, so I know where you are coming from. :)


Sat Oct 21, 2006 8:51 pm
Post 
Hello all.

My mother was diagnosed as having LBD exactly 1 week ago after tests with a psychologist (ordered by new neurologist). The follow-up with the neurologist was today. I'm thanking God for this forum and for the yahoo groups and everyone who has been so willing to share their experiences. I've been reading them as much as I can for info and was able to discuss things with the doctor today in an informed manner.

He prescribed Excelon and ordered a PET scan. He said to keep taking the Effexor 75mg for now -- which was the result of the FIRST round of testing done 2 years ago, nothing further done for her. Was told depression causes "these types of symptoms". A sort spot with me.

My question is, how long before you saw an improvement in your LO when using cholinesterase inhibitors such as Excelon? I can't recall reading about that in particular, but I do feel overwhelmed with info and may have missed it.

Thank you for any help,
Mae

Hi Mae,
I am very saddened for your Mother's DX of LBD, on your question of the Exelon I had many doubts as to how it was helping and when I questioned it with the Dr his answer to me was we really don't know how he would be without it and that was enough to tell me to stay with it. Please push for the pet scan just a yr ago I asked and was told no they only do them for research and I am pleased that they are now doing them and the effexor my husband also took almost until the end at 150 mg per day, Another good hint I can give you is to try and keep a journal of each day because when you need to you can always look back on it and another helpful thing is routine it will make the care go easier people with LBD tend to get flusttered very easy. I wish you well and Please come back often someone will always listen


Sat Oct 21, 2006 9:00 pm
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Hi Maureen,

I understand exactly what you're saying. I made the same comments, "Of course she's depressed! But, what is going on?!" She was so upset about being forgetful and confused, plus her best friend had just died. But, I was convinced her condition wasn't about simple depression. Well... you can imagine. Ugh.

The only thing positive I can say about the previous psychologist is that he told her she shouldn't try to drive anymore because she "couldn't process what she sees." He got that from his testing of her, but still would only say "depression" and nothing more came of it. Still, at least we had an easy excuse to get her to stop driving. *whew*

What is "cinimet" for?
_________________
~Mae


Dear Mae, here is some info on Sinmet!

Sinemet Oral Uses
Levodopa and carbidopa are used in combination to treat the symptoms of Parkinson's disease or Parkinson-like symptoms (e.g., shakiness, stiffness, difficulty moving). Parkinson's disease is thought to be caused by too little of a naturally occurring substance (dopamine) in the brain. Levodopa changes into dopamine in the brain, helping to control movement.

Carbidopa prevents the breakdown of levodopa in the bloodstream so more levodopa can enter the brain. This can reduce some of levodopa's side effects such as nausea and vomiting, and it may also allow your doctor to increase your levodopa dose more quickly to find the best dose for you. This combination may be used alone or with other drugs for Parkinson's disease.

How to use Sinemet Oral
Take this medication by mouth with food, usually 3 to 4 times a day or as directed by your doctor. If you have been taking levodopa without any carbidopa and are taking this combination for the first time, wait at least 12 hours after your last levodopa dose before starting this medication. You may want to start your first dose in the morning. Your doctor will usually reduce your levodopa dose when starting this combination to prevent side effects from too much dopamine. Be sure to follow your doctor's instructions closely.

This combination comes in different strengths with different amounts of carbidopa and levodopa in each tablet. Be sure you have the correct strength of both drugs. Your doctor may also prescribe carbidopa alone to be taken with this combination.

Avoid high-protein diets because they may prevent absorption of this medication. Separate your dose of this medication as many hours as possible from any iron supplements or products containing iron (e.g., multivitamins with minerals) you may take. Iron can reduce the amount of carbidopa and levodopa available to the body.

Use this medication regularly to get the most benefit from it. To help you remember, take it at the same times each day. Dosage is based on your medical condition and response to therapy.

Some people may experience a decrease in the effectiveness of this medication just before the next dose is due. If this occurs and is bothersome, notify your doctor. Do not change your dose of this or any other medication without checking with your doctor first.

Do not stop taking this medication without consulting your doctor. Some conditions may become worse when the drug is quickly reduced or suddenly stopped. Your dose may need to be gradually reduced. (See also Side Effects section.)


Sat Oct 21, 2006 9:06 pm

Joined: Sun Oct 01, 2006 1:16 am
Posts: 5
Post 
Mae - do post the results of the PET scan and if it seems helpful. There are so few people who have had one that there's not much information.

Aricept seemed to help LO for a month, but of course, it made her so nauseated that she lost 15 pounds in that month. The Namenda seemed to help for several months. With Requip, she walked better for a week, then back to baseline. Tried NADH - (See Google) and it gave her much more energy for a week. Getting ready to try Exelon. Will take a couple of months to get up to speed, but why do I think it may help for one week?

In the Alz group I've been in, most of the caretakers had taken their LO's off Aricept and they hadn't noticed much change, but then the LO's were already into pretty severe dementia. From what little I know, the LBDers heads keep going longer so I'm hanging in, though the choking makes me nervous about giving too many pills. (Have to remind her with every one not to chew it and to swallow.)


Sat Oct 21, 2006 11:34 pm
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Joined: Thu Sep 07, 2006 7:40 pm
Posts: 64
Location: Chelmsford, MA
Post Exelon
My Mom has LBD, she is almost 79. I started her about a month ago on 1 & 1/2 mgs of Exelon. She seemed to be doing better, so I increased it to the recommended 1 1/2mgs 2X a day last week. Well, she said that her head felt like it was flying and that right in the middle of talking she had to stop because she forgot what she was saying...Keep in mind, Mom doesn't know she has LBD nor does she know she is taking Exelon. So as of yesterday, I decreased it back to the one pill a day and will start off slower as I read on the support group site that it should be increased very, very slowly. She just thinks she has a little problem from small strokes that have made some changes in the way her processor works in her brain. She is a complete worrier and OCD and if she knew everything, that would be a quick end to everything...But, it is getting harder to keep things from her and at some point, maybe I will have to tell her more...Irene, do you have any thoughts on that? How to tell them or if to tell them? First of all, I don't think she would understand...no matter what I told her anyway. I've explained about the infarct strokes (diagnosed 5 years ago) at least a millions time and she doesn't remember....

Glad to see you back Irene, we missed you...
My best,
Diane

_________________
Caretaker Daughter of 79 YO MOM with Vascular Dementia & AD


Sun Oct 22, 2006 1:21 am
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Hi Diane,
Thanks for the welcome back I wqas only gone a few days LOL! :lol:
I am home now until Dec!


Sun Oct 22, 2006 9:24 pm

Joined: Thu Aug 24, 2006 12:03 pm
Posts: 79
Post 
Just a little word to everyone about Exelon. It seems to work for some and not for others. My husband tried Aricept and everything, including the hallucinations and horrible behavior increased. So now he's been taking Exelon for about 2 years and I have noticed a difference. He seems lucid in the morning on waking, as before, he wandered about like a zombie. Now he can put on his trousers, not all the time. The neurologue said the other day that the LBD had not progressed, but was stabilized, thanks to the Exelon. He takes Modopar for the Parkinson's symptoms.

I have read articles about Exelon and Aricept saying the doctors don't really know if they help, that they may act like placibos, but the Exelon certainly has made a difference, and some days, when I don't have to do everything for him and can have a bit of life for myself, I feel better. I hope it will be so for all the caregivers. Dinny Wolff


Sat Nov 11, 2006 1:57 pm
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