Re: Re: Elise: scared with questions

[Guest guest]

Hi Elise,

It's very hard to know how each individual will react to medications and

especially LBD since they have such a high sensitivity to medications. My

husband could not tolerate Aricept, he was on it for a very short time. He took

another memory medication called, Exelon. He was on the Exelon Patch and did not

have to take it orally. It's a 24 hour patch and starts out at 4. 6 mg. and

works up to 9.5 mg in 4 weeks. I requested my husband stay at 4.6 mg since he

did best on less dosage. Some add Namenda as a second medication along with

Aricept or Exelon and find it helps. My husband did well on the 4.6 mg of the

Exelon Patch and had no reactions to it. There are other alternatives other than

Aricept. http://www.exelonpatch.com/info/The_Exelon_Patch_Parkinsons_Disease_De\

mentia/parkinsons-disease-explained.jsp

Jan Colello

San Francisco Bay Area, CA

Husband, Jim, dx w/LBD 2003

Deceased, January 22, 2011

Subject: Re: scared with questions

To: LBDcaregivers

Date: Saturday, June 11, 2011, 8:00 PM

 

The problem is if it is the Aricept, the longer he's on it, the longer the

withdraw will be. If there's a chance that's what's causing the problem I would

stop it. Also check any over-the-counter meds he might have on hand. If he's

living alone and somewhat forgetful he can get into a lot of trouble

self-medicating with OTC's.

>

> Hello, all,

>

> I am new to this site and vey scared, as I'm sure all of you were in the

beginning. I have a rare lung disease myself called primary pulmonary

hypertension, and the message board on the Pulmonary Hypertension Association

website has been a Godsend to me, so I was excited to find this website for Lewy

Body as well.

>

> My wonderful father, who will be 85 in two weeks, was just diagnosed last week

with LBD. He has been in excellent health up until now, so this has been a huge

shock. I started to notice he was getting a little more forgetful sometime this

winter, but it seemed manageable. Then he kept talking about these vivid dreams

he was having, and how he would get up in the middle of the night to look around

the apartment because he had dreamed someone was there (he has lived alone the

last three years since my beautiful mother died of heart disease.)

>

> Then, about six weeks ago he started telling us he thought he had carpet

beetles in his apartment. He said he was seeing " swirls " or " movement " and the

" aftermath " of a bug " feeding frenzy. " After determining there were no bugs and

that his eyes were fine, we took him to a geriatric specialist, who did memory

tests and gave us the LBD diagnosis. They put him on Zoloft and Aricept.

>

> Almost immediately, Dad started experiencing extreme fatigue, loss of

appetite, trouble sleeping and staying asleep and some muscle cramps. We took

him off the Zoloft, and now we are wondering if we should take him off the

Aricept, as these symptoms are listed among possible side effects. My dilemma is

that if the Aricept will help his memory, is it worth it to wait to see if the

side effects will last?

>

> The doctor said he was in the early stages of LBD and the progression will

likely be slow, but since he got diagnosed and started these new meds, he seems

so much worse! Before this, he only took a diuretic for mild high blood pressure

and a baby aspirin.

>

> Does anyone have any advice about continuing the Aricept based on the side

effects it seems to be causing?

>

> Thank you for any help anyone can give me. I am so lost right now as I try to

process all this, and I know my dad feels the same way.

>

> Elise in Illinois

>