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 help with side effects of aricept 
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post help with side effects of aricept
Hello all,

I am newly dx with early onset LBD...I was wondering if any of you could tell me what might help with some of the side effects of aricept. I understand they are supposed to go away after awhile and are better with a slow titration upward. I have been on 5mg for three weeks and I am supposed to increase to 10 mg at the end of this week. I am having awful muscle spasms and I don't know if water and potassium make any difference when these things might be neurological and not a result of dehydration or are they? I am having a lot of pain...I had the spams before as part of the parkinson symptoms that have started, but nothing like it's been since starting the aricept. Insomnia is terrible - again I had problems before but now can hardly sleep - Am working with a sleep doctor but was hoping some of this would have abated by now. I have had lots of ringing in the ears, nausea (for which I take zofran - is that med okay with LBD?) and the typical GI problems, vertigo and gait problems. I appreciate any help you all can offer me. My doctor will be adding Namenda to the aricept in May. Also basically I should avoid any medications that are drying such as muscle relaxers :( or anti-histamines - is that correct (and I know about the neuroleptics)?
Thank you all and bless you all for the wonderful care you give your LOs....My husband of 20 yrs is taking my dx pretty hard (got it three weeks ago) but he's loving me unconditionally - like you all are doing - I can't imagine a greater gift! If your LOs can't let you know now - I hope I can speak for their hearts since I am early in my disease and say "thank you with all my love for taking care of us".......
Best......
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Tue Mar 15, 2011 1:45 pm
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Joined: Sun Aug 29, 2010 5:46 pm
Posts: 610
Post Re: help with side effects of aricept
Tonya, I'm sorry I can't help you with the drug information you seek but just wanted to say welcome to the forum. You will find a lot of helpful and compassionate people here. I am so sorry that you are dealing with LBD at such a young age but glad to know you have a devoted husband at your side. I hope that the Aricept and Namenda will be helpful to you. Best wishes for adjusting to life with LBD.

Julianne


Tue Mar 15, 2011 2:48 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: help with side effects of aricept
Tonya, if you are supposed to increase to the higher dose of Aricept later this week and you are having side effects from the lower dose, I would surely let your physician know! You and your husband will be in my prayers. God bless!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 15, 2011 3:07 pm
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Joined: Mon Feb 21, 2011 9:55 pm
Posts: 355
Post Re: help with side effects of aricept
Tonya, I am so sorry for your need to be here. My heart goes out to you. I'm afraid I can't give you any advice on aricept, but I can tell you that you have come to the right place. The people here are like family, and, because they have all been there with this disease, are a wealth of information. God Bless you and your husband on this journey.

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cared for Dad who passed away on January 28th 2013 R.I.P.


Tue Mar 15, 2011 3:11 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: help with side effects of aricept
Hi Tonya,

Sorry you've had to join us here.

I agree that you should speak with your neurologist about the problems you are having, particularly the increase in painful muscle spasms and your insomnia. Are you dehydrated? Certainly dehydration can make all sorts of symptoms worse. Are you taking anything for the muscle spasms (Neurontin, for example)? Are you taking anything to help you sleep?

To see if muscle spasms is a possible side effect from Aricept (donepezil), I suggest you consult a website such as rxlist.com or drugs.com.

Zofran is thought to be fine with LBD.

I don't think of muscle relaxers as drying, so I'm not sure why you'd want to avoid those. Some with LBD can tolerate Ativan, for example, with no problem. Others swear about that medication. Another muscle relaxer that might help with the muscle spasms and the insomnia is Klonopin.

Neuroleptics are not drying either. There are other issues with neuroleptics.

Medications that contain the antihistamine Benadryl are to be avoided in LBD.

I suggest that you find Dr. Brad Boeve's 2004 "Continuum" paper on lbda.org. He addresses the best medication regimen for each symptom in DLB.

Robin


Tue Mar 15, 2011 6:14 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: help with side effects of aricept
Tonya,

Did you post a similar message a few days ago to the "Support group for those with early LBD" area? That part of the Forum gets very little traffic from LBDers.

There are a few with early LBD diagnoses who have posted in the Introduction area of the Forum but no longer post to the Forum, after having found each other. You might find them as well! I remember two of the names -- pubpanda and Paula55. You can find one of their posts and either email them or "PM" (send a private message to) them.

Robin


Tue Mar 15, 2011 6:25 pm
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Location: WA
Post Re: help with side effects of aricept
Actually, quite a few neuroleptics are anticholinergic [drying] but they are not ones recommended for dementia.

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Tue Mar 15, 2011 6:31 pm
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: help with side effects of aricept
Tonya, welcome to the discussion forums. Almost all of us are caregivers, not people with lbd, but I hope we can be of some assistance to you, and to your husband if he cares to join in.

Rememer that Lewy doesn't have a standard, consistent MO, and what you read about any individual might not apply to you.

I don't believe that my husband, Coy, had any side effects from Aircept, so I can't help you from personal experience. It looks like your doctor has a long-term plan for introducing medications. That is very smart. Figure out the effectiveness of one drug and the appropriate dosage before moving on to an additional drug. The doctor certainly needs your feedback to adjust the plans. This is partly trial-and-error and it can take a long time, but it can also be very rewarding and it is worth being patient. If you try a drug that doesn't work for you, it doesn't mean your doctor is incompetent. What works well for others may not work for you and there is only one way to be sure.

Each experience is unique, but let me share an overview of my husband's progress with this disease. He had an obvious meltdown in June 2003. His PCP was not helpful at all, but his sleep doctor got him in to see a neurologist who is an expert in lbd. This doctor tackled one symptom at at time. It took almost a year to arrive at the 5-pill combination Coy takes for sleep and dementia problems. During the first months Coy experienced extreme sleep problems, impaired visiospatial perceptions, very frequent falling, hallucinations, paranoia, belligerence, delusions, very poor memory, and poor cognitive functioning. All of those symptoms have been addressed and greatly reduced or removed. For the last 7 years he has remained in "early stage" lbd and has a decent quality of life. Yes, he has problems and he needs a caregiver and lots of support, but there have been huge improvements. He was in a wheelchair in Oct '03, but he walks unassisted now, and bowls with a senior league once a week. Except for bathroom trips (which he can manage on his own) he sleeps through the night. He has slow reaction time and he can't drive, but he takes his power scooter to the barber and the library, etc.

Each case is different. No one can predict exactly what the next 7 years will bring for you. You already know that you are "not typical" in developing this so young. My hope for you is good improvement in your present symptoms and a very slow, long progression.

Jeanne

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Tue Mar 15, 2011 7:46 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: help with side effects of aricept
Thank you all for your kind welcome, helpful tips, prayers and compassion - and hope!!
I am very grateful to all of you - especially for all that you give of yourselves....I will check the beoeve document - I did find it one day - I'll re-read it - I am having some trouble with my memory....Thanks again to you all!!
Best wishes,
Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Tue Mar 15, 2011 9:36 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: help with side effects of aricept
Tonya - welcome, I am so sorry for your diagnosis and hope you have a great medical team in place to help you with control the symptoms as much as possible. Big hug to you and your family. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Tue Mar 15, 2011 10:17 pm
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Joined: Wed Mar 02, 2011 1:04 pm
Posts: 251
Post Re: help with side effects of aricept
Hello All,
I am so moved by your kindness and support!! God Bless!

Tonya

_________________
First symptoms in 2000 at 35 yrs old. LBD early onset dx 2-17-2011 at age 46.

' "I try not to worry about the future, but rather to "wonder"....and "wonder" is one step away from "awe" '......From a wise friend........


Wed Mar 16, 2011 2:43 am
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: help with side effects of aricept
Tonya,
Welcome to the LBDA forums and I loke the others is sorry for your need to be here, I can't help with medication advice as everyone that has this illness reacts differently with each medication, I hope you discuss this with your Doctor, he is the one who can help the best !

Good Luck!

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Irene Selak


Wed Mar 16, 2011 3:28 pm
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Joined: Tue Mar 29, 2011 3:02 pm
Posts: 386
Location: East TN
Post Re: help with side effects of aricept
Tonya,

How are you tolerating aricept? Is it getting better?

I was just DX on mar 23. I started taking 15mg aricept 4 days ago. Then in two weeks I will go to 30mg. I had the diarreha, nausea, dry heaves, maybe slight headache, I think my tinnitus is louder and other sensory symptoms are increased, I just was having feeling of aliens running under my skin in my legs and wondering where that came from as I was reading your post. Then I realized that I have been having a little of that in the last couple of days. The GI side effects seem to be alot easier.

On a positive note, things seem a little clearer, but, I don't know, probably wishful thinking.

There aren't many patients on here, I guess we can compare notes as we go.

_________________
Craig - Patient - Male - 56 years old - Lewy Bodies diagnosed on March 23, 2011 - cognitive disorder NOS dx 2007 - RBD REM dx 2007 issues for 20+ years - intention tremor 1974 - other issues many years


Wed Mar 30, 2011 3:05 am
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: help with side effects of aricept
Quote:
There aren't many patients on here, I guess we can compare notes as we go.

Did you know that there is also a separate sub-forum called Support group for those with early LBD which is found under the 'Living with LBD' menu? You may have already found it but, since I don't have access, there's no way for me to know. I have no idea how many are on that forum. Wishing you both the very best! God bless you!

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Wed Mar 30, 2011 8:13 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: help with side effects of aricept
There are remarkably few posts on the forum area designed for those with early LBD diagnoses. I think they find each other and leave the forum.


Wed Mar 30, 2011 12:21 pm
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