View unanswered posts | View active topics It is currently Sat Oct 25, 2014 1:33 am



Reply to topic  [ 22 posts ]  Go to page Previous  1, 2
 ARICEPT NOT RECOMMENDED FOR LBD PATIENTS 
Author Message

Joined: Tue Nov 25, 2008 3:10 pm
Posts: 34
Location: London / Italy
Post just a small contribution
we have not had any experience with Aricept/donezepil (my mum has been taken Exelon from the start), but, having been on clinicaltrials.gov, as a recent email from the Association recommended, I had noticed that there were a couple of trials going on focusing on the effects of donezepil on LBD patients, being carried out in Japan. They're supposed to end in August 2009 and mid-2010 respectively, so let's see what comes out of them.


Sun Jun 07, 2009 2:42 pm
Profile

Joined: Wed Oct 08, 2008 10:30 pm
Posts: 976
Location: Henderson, Nv.
Post 
Have to put in my 1 cent worth.

I have to agree...each of the patients are unique as are their reactions to the assortment of drugs availabe. There is no "one size fits all" with this wicked disease nor for the treatment. All we can do is try this, fiddle with that, start low and go slow and pray one of the combinations work. Oh how we pray they work!
My hubby has been on Aricept, Sinemet, Lodosyn, Seroquel and Paroxetene for 4 years now...and thank goodness for it! We have tried Exelon twice (as it is supposed to be great for LBDs) to horrible reactions. Everytime we "change a med" we go through days and weeks of insanity...for lack of a better word. The reactions can be gruesome. Went back to the originals and for the time being are in a halfway decent place. I know we will have to address some changes soon but believe me I am not looking forward to it at all! All I can say is this menu has worked for us but perhaps may not work for others. Yes, some of these meds...as with all meds...have warnings, etc. They all do. At times we have to accept the tradeoff. There is NO perfect med for LBD...and many other dementia diseases.
Doctors? I don't even want to go there. We have worked with 3 neuros..all were very familiar with LBD...one who is doing major research ( a university head) on brain and dementia disorders..2 psychiatrists (one very familiar with LBD the other not), 2 psychologists (one good the other not) plus a Geriatric Dr. who is very good and 2 GPs (one knew nothing of this the other we have worked with on educating her and she is now really "into" it.) While they are aware of the disease the general concensus is "there is no miracle cure nor one set prescription for all." You must work to obtain the best results for current time.
We, in our role as caregivers, are not trained, licensed people. We do our best, take one day at a time and deal with it to the best of our abilities...and bless each and every one of you for your endless loving, caring, compassionate efforts.

_________________
Dianne C.


Sun Jun 07, 2009 8:05 pm
Profile

Joined: Thu May 14, 2009 11:19 pm
Posts: 28
Post Aricept Worked Earlier, But Is Now Aggravating REM Sleep
I think the answer may depend on the stage that the patient is in. My DH has been on Aricept for 18 months. He had hallucinations even on the Aricept (and before the Aricept). Risperdal (4 mg) was initially used to make the voices and visions go away, but we shifted to Seroquel because the Risperdal was making my DH too flat (blank/drugged). We still had to keep him on .5 mg of Risperdal because of a movement disorder that the Risperdal happened to positively affect.

Just recently, the voices have returned and my DH's REM sleep problems (movement, hearing voices, and seeing things) have all gotten worse. We have increased the Risperdal to .5 mg in the am and 1.0 mg in the evening. While the voices have reduced, the REM sleep movement/acting out the dreams have continued to plague my DH.

My neurologist explained that, with LBD patients, their response to medication changes over time as the illness progresses. For example, my DH was on Requip for about 18 months. During the first 6-8 months he didn't have any hallucinations so we did not make any connection between the hallucinations and Requip. The Requip did, however, seem to help reduce his movements in the night. About a year later, a neurologist consultant recommended removing the Requip because it can cause hallucinations (confirmed by other research). I didn't see any change in my DH's sleep disorder after removing the Requip. He had not been having hallucinations at the time so I cannot say if the Requip was causing the hallucinations. However, it was obvious that the Requip was no longer providing any benefit. The effect of the medication definitely changed substantially.

The neurologist said we should reduce the Aricept from 10 mg to 5 mg and see how my DH is 2 weeks from now.

I am concerned/scared that the increase in Risperdal and the reduction in Aricept will make him less "here." At the same time, I know that the voices scared him very much and that is not an acceptable quality of life (constant fear). So ... as hard as it is ... we are moving him toward more Risperdal, staying on the Seroquel (300 mg at night), reducing the Aricept, and keeping him on the Namenda. I really hope that this will work.

_________________
May God hold you in the palm of His hand and shelter you in the light of His love.


Tue Jul 14, 2009 1:17 am
Profile

Joined: Thu May 14, 2009 11:19 pm
Posts: 28
Post Neuro Changing Aricept Because Change in Effect
I think the answer may depend on the stage that the patient is in. My DH has been on Aricept for 18 months. He had hallucinations even on the Aricept (and before the Aricept). Risperdal (4 mg) was initially used to make the voices and visions go away, but we shifted to Seroquel because the Risperdal was making my DH too flat (blank/drugged). We still had to keep him on .5 mg of Risperdal because of a movement disorder that the Risperdal happened to positively affect.

Just recently, the voices have returned and my DH's REM sleep problems (movement, hearing voices, and seeing things) have all gotten worse. We have increased the Risperdal to .5 mg in the am and 1.0 mg in the evening. While the voices have reduced, the REM sleep movement/acting out the dreams have continued to plague my DH.

My neurologist explained that, with LBD patients, their response to medication changes over time as the illness progresses. For example, my DH was on Requip for about 18 months. During the first 6-8 months he didn't have any hallucinations so we did not make any connection between the hallucinations and Requip. The Requip did, however, seem to help reduce his movements in the night. About a year later, a neurologist consultant recommended removing the Requip because it can cause hallucinations (confirmed by other research). I didn't see any change in my DH's sleep disorder after removing the Requip. He had not been having hallucinations at the time so I cannot say if the Requip was causing the hallucinations. However, it was obvious that the Requip was no longer providing any benefit. The effect of the medication definitely changed substantially.

The neurologist said we should reduce the Aricept from 10 mg to 5 mg and see how my DH is 2 weeks from now.

I am concerned/scared that the increase in Risperdal and the reduction in Aricept will make him less "here." At the same time, I know that the voices scared him very much and that is not an acceptable quality of life (constant fear). So ... as hard as it is ... we are moving him toward more Risperdal, staying on the Seroquel (300 mg at night), reducing the Aricept, and keeping him on the Namenda. I really hope that this will work.

_________________
May God hold you in the palm of His hand and shelter you in the light of His love.


Tue Jul 14, 2009 1:20 am
Profile

Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post 
Cryst,
I can't say that I blame you for your concern, We already know that the most helpful drugs in LBD are the Cholinesterase Inhibitors, as you probably know there are really no drugs specific for LBD yet! As to the Seroquel and Risperdal, The Seroquel is a first choice drug with Risperdal being the second choice drug, why are they not increasing the seroquel and to be honest with you this is the first time I have every heard of the two being used together, you don't mention the prior issue you had with Seroquel and how long your husband was on it, sometimes there is a period of adjustment. Sadly we have we have to weigh out the problems with this illness, No easy answers! A real balancing act!

_________________
Irene Selak


Tue Jul 14, 2009 8:17 am
Profile WWW

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post 
Actually, Exelon is approved for use in PDD (LBD).


Tue Jul 14, 2009 10:25 am
Profile

Joined: Tue Aug 11, 2009 11:07 am
Posts: 13
Location: New Jersey
Post 
I am new to this whole subject. My husband has been having mild to moderate symtoms of LBD for a long while and just this week, I connected the dots and they point to LBD. He has been having hallucinations for years, and I was told it was Charles Bonnet Syndrome, which it may also be since he has macular degeneration, but he also has all the classic symptoms of LBD. Now, my dilemma. He was on Aricept 2.5 mg for about a year and when his confusion got worse, the Dr. doubled the aricept to 5 mg. It made him nauseous, so a neurologist stopped the aricept and put him on Namenda. From reading these posts, I gather that treatment with the various meds described here is sort of hit or miss, depending on each patient's response. I wasn't sure the namenda was doing anything for my husband. He is on the tritrate pak and is up to 10mg twice a day. I'm just so leery of all this medication. Some seem to make patients worse, some better, its hard to know. I haven't yet found a specialist/neurologist who seems to know. He was taking zoloft 50 mg for mild depression and I took him off for fear it was not a good idea. He is on so many meds that our family was worried that the interaction of all the meds was adding to his confusion. Here are the rest of the meds he is currently on: monopril 20 mg twice a day, toprol XL 200mg, lasix 40 mg, amlodipine besylate 5 mg, clonidine HCL 0.1 mg 2 or 3 times a day depending on how high his blood pressure is at night, cardura 4 mg. I know most of those meds are for high blood pressure, his BP is quite volatile and, from what I've been reading, could be part of the LBD. With so much medication, its hard to know what is hurting and what is helping.
Ruth


Fri Aug 14, 2009 8:40 am
Profile
Display posts from previous:  Sort by  
Reply to topic   [ 22 posts ]  Go to page Previous  1, 2

You cannot post new topics in this forum
You cannot reply to topics in this forum
You cannot edit your posts in this forum
You cannot delete your posts in this forum
You cannot post attachments in this forum

Search for:
Jump to:  
Powered by phpBB © 2000, 2002, 2005, 2007 phpBB Group.
Designed by STSoftware for PTF.
Localized by Maël Soucaze © 2010 phpBB.fr