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Joined: Tue Dec 23, 2008 8:52 am
Posts: 154
Location: Michigan
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After 2 years & 9 months of daily & nightly hallucinations, Hubby was diagnosed with LBD Oct 2008 at the University of Michigan. Dx'd dementia end of Aug 08.

During this time he was given Zyprexa, resperal, ambilify & Geodon - all with terrible side effects. Also couldn't tolerate lorazepam (ativan).

Arisept was tried and that failed for him also.

He was on 400 mg of seroquel at bedtime, but is now down to 100 mg at bedtime which seems to work as well as 400 mg did. Also takes clonazepam (klonopin) which works for him.

On Christmas day we started the exelon patch. Next morning he was so confused and agitated that it was discontinued.

My question is: The neurologist wants to try the exelon patch again, starting Monday. Has anyone tried it a second time and it worked?

I've been reading this forum since hubby was dx'd and really learned a lot. He does all the same things other Lewy patients do.

karenpm


Thu Jan 15, 2009 11:18 pm
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Joined: Sat Jan 27, 2007 8:38 pm
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Location: CA
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Karen --
I guess before I would let a doctor give my husband something that he had such a horrific reaction to, I'd ask why the doc thought the reaction happened the first time and why it would not happen this time. Does he think that something other than the Exelon patch caused the bad reaction? Or will he be starting him on a lower dosage this time?

If I wasn't satisfied with the answer, I probably would not consent to re-start at this time. Is your husband making his treatment decisions on his own at this point or are you? If you, don't be afraid to stand firm on what you believe is in the best interests of your LO even if it means disagreeing with the doctor.

Let us know what happens either way. Good luck!

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Renata (and Jerome-in-Heaven)


Thu Jan 15, 2009 11:34 pm
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I agree completely with Renata's advice.

The only thing I would add is what problem is the MD trying to address with Exelon? If the MD is trying to address progressive dementia, cognition, hallucinations, or delusions, I might be more inclined to try something like Namenda, as it doesn't appear he's tried this med before. Sounds like the AChEIs (Aricept, Razadyne, Exelon) may not be for him.


Thu Jan 15, 2009 11:51 pm
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And....who is your husband's MD at the U of Michigan and would you recommend him/her?


Thu Jan 15, 2009 11:52 pm
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Joined: Mon Jan 05, 2009 4:23 pm
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Location: the Netherlands
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Karen, we have excelent results on those issues with the exelon. My father was hospitalized in a specialised closed facility and his behavior was so bad, complicated and he had horrable hallicinations which turned him violant, that even there is was not sure if he could stay .... He was already on a low dose of exelon for about a month when he arrived and after approx 2 weeks the MD increased in to 9 mg per day. The next day he could talk again (he couldn't very goods before, forgot all words and became very angry then)like someone gave him pepper or something and within the next 4 months he improved so much that he could do everything himself again (which was absolutely not the case before. He could not shower himself, didn't know how to put on clothes and what clothes to dress where, had no shame, stood before the window to the street in his naked self etc etc). At first the docter advised a closed facility for him to live in, but he improved and kept improving so now he is currently living in a normal elderly home with 24 hours care. He can come and go whenever he pleases, does his own shopping, rides a bike. Offcourse they and we keep a close eye because thing may change overnight but he's doing great on the exelon, I didn't know that such an improvement was even possible.

Sandra


Fri Jan 16, 2009 2:57 am
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Joined: Tue Dec 23, 2008 8:52 am
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Location: Michigan
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First thank you for your help!

Hubbys' exelon patch is 4.6 mg 1x day. Is there a lower dosage than that? My thoughts now are if exelon is from the same family as Aricept, and he has already had an unfavorable reaction to it, why do it again? On our first meeting with the UofM Doc, he wanted him to try Aricept again and I told him "You don't have to live with him when he's on it". So he noted in his records no more Aricept for Hubby. I was hoping he would suggest Namenda just from reading this forum.

Regarding medical decisions, I guess I kinda make them for him. Usually going with whatever the Dr suggests. Until this time. I have been going to all of his Dr appts since the beginning of this ordeal and usually do all the talking. I had to retire in June of this year to become a full time caregiver. Hubby is 74 & I just turned 68.

Hubby sees Henry L. Paulson, MD, Phd at the UofM. Yes, I like him. Also he was able to give us a dx which his regular neuro doc (who specializes in LBD) couldn't do. Several times I told his old neuro doc that I wanted to take Hubby to Mayo, and he finally referred us to the UofM. We will stay with Dr Paulson even though it's quite a long drive for me. He knows about LBD!

Wow, Sandra. Although my Hubby spent 10 days at the onset of his hallucinations in a psych ward, his problems were not that great. I am so happy for you and your Dad that they were able to help him.

I correct myself now. Hubby does a lot of the things other patients do. He does one thing that I haven't read on this forum (yet). He now and then over turns my furniture. He had moved the tread mill 90 degrees. Took the mattress off the bed. Overturned my Lazy-Boy hide a bed couch. Moved furniture to different rooms.

I won't be able to talk to the Doc till next week, but I won't do anything before then.


Fri Jan 16, 2009 11:11 am
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Joined: Sat Jan 03, 2009 2:59 pm
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Karen,
Welcome to the LBDA forums, our experience with Exelon was good so I am thinking if your husbdn didn't do well with a min does of 4.6, how would he be with max dose and I am sure that's the doctors intention so I would be inclined to agree trying the Namenda might be the one that will work.
As to your question about turning furniture over , yes I have heard of that several times from other care givers with their loved ones and I remember one time a caregiver told me her husband took ceiling fans down during the night and took them completely apart.

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Irene Selak


Fri Jan 16, 2009 2:00 pm
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Joined: Tue Dec 23, 2008 8:52 am
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Oh, boy! Back to 400 mg of seroquel at night! It does not stop the hallucinations, but it makes them more tolerable for hubby (and me).

Renata & Robin,

Thanks for your suggestions about the exelon patch. I finally talked with the Doctor yesterday (not his fault, I've been in physical theray for tendonitis in my arm and been gone a lot). First thing he said was " That's a good question regarding trying the exelon patch again!" He didn't prescribe the namenda yet, but he's bringing it up at the staff meeting Monday. He said that was mostly for Alz's patients. I said I read about it working for some LBD patients on this forum and he said he would access this forum and check it out. I told him I mentioned his name and he hoped it was in a good way! LOL


Sat Jan 24, 2009 12:44 pm
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Dear Karenpm,

I do hope your dr. will eliminate the Zyprexa. It does horrific things for LBD patients. The University hospital in Grenoble, France, prescribed it, and it caused havoc. Now I wonder if I would ever go back there again. I could not believe the change in behaviour, almost violent in the first stages! Our GP told me to get PE off it immediately, which I did.

Aricept was no good, either, but Exelon works very well, as does Namenda. I hope you can find the right medicine. Dinny Wolff


Sat Jan 24, 2009 1:23 pm
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Joined: Tue Dec 23, 2008 8:52 am
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Location: Michigan
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Hi Dinny

Zyprexa was one of the first drugs prescribed in 2006. No, it didn't work out at all. Like you said, it played havoc!

No more arisept or exelon patch either for Hubby. He couldn't tolerate them.

We are now waiting to see if his Dr will prescribe namenda for him.

Thanks for writing.

Karen


Sat Jan 24, 2009 3:15 pm
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Joined: Fri Aug 11, 2006 1:46 pm
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Location: SF Bay Area (Northern CA)
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Karen,

Yes, you are safe in having recommended the MD on this Forum!

Have you given him Boeve's "Continuum" paper yet? Boeve is at Mayo Rochester. He talks all about Namenda.

Robin


Sat Jan 24, 2009 8:16 pm
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Woot!

I took Hubby back to our previous neurologist today. He prescribed namenda right away! :D


Tue Jan 27, 2009 5:52 pm
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Good for you!


Tue Jan 27, 2009 7:05 pm
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Joined: Tue Dec 23, 2008 8:52 am
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Location: Michigan
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Thanks for the encouragment, Robin!


Tue Jan 27, 2009 10:33 pm
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Joined: Tue Dec 23, 2008 8:52 am
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Hubby has been on Namenda for about 2 weeks now. The hallucinations seem to be tolerated a bit better now (he is not pacing the house with a baseball bat or chef's knife anymore). He seems calmer and able to watch TV (which couldn't hold his interest over watching his "people").

The down side is that he is getting up half the night and he takes 400mg of seroquel at bedtime. In the beginning it was really rocky. One night he wouldn't even go to bed! It's more like sleepwalking as the next day (he's up already at 6 or 7 am, not even tired and I'm dragging my butt around!) he does not remember that he was up or what he did. Maybe I should call it "Lewy walking". lol

Karen


Mon Feb 09, 2009 4:23 pm
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