Eric,

I think that's a better guess than mine. My thought was that in PDD the PD pathology occurs over a long period, finally letting the dementia develop much later in the disease course while in LBD the processes that lead to dementia related to Lewy bodies is related to and helped by the processes that lead to AD.

You are right - that review article didn't get into that subject.

Robin

I need some help. Is fentanyl 25mcg patch a good med to use with LBD???? 1 patch for 72 hours. Jackie had it for the first time this pass thursday today so drugged up we can wake her up completly. if it is on the ok list i will just lower the dose????
Helppppppppppppp

Phyllis,

I'm assuming you mean to say she had a patch placed last Thursday and today you CANNOT wake her completely.

No one here is a doctor (other than "LBDdoc") so all we can do is look at the various lists that have been published, just as you can do.

There are (at least) two lists -- the "BAD LBD MEDICATIONS" list (written by Jim Whitworth) and the list distributed at the Jan '07 FL Symposium (written by Dr. Jay Van Gerpen. I posted the first list in response to your previous topic "is there a list of meds never to give to an lbd patient?" I posted the second list in response to "Mepergan Reaction," a topic started by someone else. I will ask the moderator if she can post these two lists as stickies. I'm copying them below, once again.

Did you ever learn how to do searches? There's a search button near the top of the page. You can enter in search text such as "fentanyl" and do a search of message text (the default is "topic title and message text"). By doing a search on "fent*" (in case someone mispelled the medication name), it yielded a couple of things. One is a post from WifeLiz that you might find interesting; in it she says that she was told that her husband's deterioration was caused by fentanyl.

If the fentanyl is being given for surgery, you might check out the post from Angela Taylor on the subject of "anesthesia and LBD":
http://www.lewybodydementia.org/forum/v ... .php?t=130
In addition to the general message from the LBDA, there's also a good post from Irene Selak on anesthesia.

Good luck,
Robin


****************

Probably this one is referred to most frequently (at least on LBDcaregivers) prior to the Jan '07 FL Symposium (when a new list was born); this was written by Jim Whitworth, one of the founders of the LBDA:

(file name - BAD LBD MEDICATIONS.txt....typos in original)

BAD LBD MEDICATIONS

Based on actual experiences reported by caregivers.
Revised, January, 2004.

One of the symptoms of LBD is extreme sensitivity to many medications.

NEUROLEPTICS AND OPIATES ARE LIFE THREATENING.

DO NOT GIVE:

Haldol, Clozapine, Morphine, Demerol or any other neuroleptics or opiates.
All medications ending in "azine" may cause neuroleptic malignant syndrome.

AVOID:
Zyprexa/olanzapine

Risperdal/risperidone

Ativan/lorazepam

Mirapex/pramipexole

Eldepryl/selegeline

Ambien/zolpidem

Ultram/tramadol

Detrol & Detropan

Benedryl (OTC allergy medication)

USE CAUTION:

Dilantin....extremely careful monitoring of levels is needed.

Sinemet/carbidopa-levodopa may cause increased dementia, stiffness, and hallucinations.

Cough and Cold medications

This is not a complete list of medications, which may cause serious consequences in LBD patients. Bad reactions to strong antibiotics, for example, are not uncommon. LBD patients who have been given the least medications, seem to do better in the long run than those who have been more medicated.

Unfortunately, the LBD patient never goes back to the level of former functioning when the troublesome medication is removed, and sometimes as with neuroleptics, there may be no recovery.

LESS IS BEST ... and safest


************

This list was distributed by Carol C. at the recent FL symposium. According to LBDcaregivers, "this list orginally
was for Parkinson's entitled "Dr. Van Gerpen's* Handout":

Medicines LBD Patients Should Never Take

Medicines for nausea, vomiting and other GI problems:
Reglan (metoclopramide)
Phenergan (promethazine)
Compazine (prochlorperazine)

Medicines for psychiatric problems:
Thorazine (chlorpromazine)
Prolixin (fluphenazine)
Haldol (haloperidol)
Loxitane (loxapine)
Serentil (mesoridazine)
Moban (molindone)
Trilafon (perphenazine)
Triavil (amitriptyline + Perphenazine)
Risperdol (risperidone)
Mellaril (thioridazine)
Navane (thiotixene)
Stelazine (trifluoperazine)
Asendin (amoxapine)

* Dr. Jay Van Gerpen, director of the Movement Disorder Clinic, part of the Ochsner Clinic in New Orleans.

Hello, Since I first posted about a month ago, I have learned a lot from the Forum and also the Spouses Group but still remain confused and concerned about the medications. Eric put the bug in my ear about Mirapex in that first post and in fact it had a negative effect on my husband and we are weaning him off it, another week and it will be done with. His posture has improved enormously since we started weaning him off although he does complain of weakness in his legs. I showed my neurologist here in Lucca, Italy, the bad med list and he said that he did prescribe some of the medications and found them useful for some and not for others. The one medication he definitely excluded was Haldol. When I mentioned that the Niaprazine antihistamine which is for primarily for children was not recommended, with a wave of his hand he let me know what he felt. I give it to my LO before going to bed as he was waking up and dressing, etc. at all hours of the night. He seems to be sleeping MUCH better but when I read these exchanges I still worry as it is an antihistamine. In a quandry! What exactly does the antihistamine do that is bad? Irene M.

Irene in Italy,

Interesting about Mirapex. It's on the Whitworth (layperson's) list of things to avoid but not on the Van Gerpen (MD) list.

On what list did you find Niaprazine??

I'm not sure about this but I think that the medications on the MD list are on that list because they are opiates or anticholinergic. That's the problem with many antihistamines (eg, Benadryl); they are anticholinergic. These are drugs that work against the cholinergic neurotransmitter system in the brain. It is thought that acetylcholine allows for mental function. Acetycholine neurotransmitters are compromised in dementia patients -- AD, LBD, PSP, etc. You don't want to make the situation worse by giving a medication that attacks that system even more. Anticholinergics can cause mental confusion.

I've been looking for months but can't find a thorough list of anticholinergic medication. If anyone comes aross this, please share! I'm hoping that such a list would indicate if something is severely anticholinergic or mildly anticholinergic. Because if you have to give an antihistamine or anti bladder spasm med, it would be best to give a mildly anticholinergic one....if such a thing exists.

There must be antihistamines that are not anticholinergic. You could investigate loratadine (Claritin). It's an antihistamine. That's what we give my dad (with PSP). I don't think it's anticholinergic but please investigate yourself!

Robin

The less anticholinergic the bladder control drug is, the less effective it is, in the very broad macro.

In the micro, there are *claims* that some of the agents are more tightly bound to muscarinic receptors than nicotinic, and that this reduces the cognitive impairment, but the psychometric instruments they've used to demonstrate this may not be exceptionally valid.

If you're taking an antihistamine for the anti-allergy effect, yeah, the second-generation stuff will give you pretty good relief with no meaningful anticholinergic action. But where people are using it for sleep, it's not coincidental - the bigger the anticholinergic bang, the better the sedation.

Niaprazine, though not available in the US, is structurally very similar to hydroxyzine, AKA Vistaril/Atarax, a 1st-generation sedating antihistamine. Niaprazine is widely prescribed in Europe for sedating kids.

Re: Haldol. In offline conversations with doctors who should know, almost all of them report that they've had *some* patients with DLB who tolerated Haldol in small doses. One says she's fine with it IV, but not orally. Your mileage may vary.

The utter lack of a scientifically rigorous utterly comprehensive list was my impetus for starting my Project From Heck, which aims to produce a comprehensive list of drugs to use with caution or avoid altogether in people with LBD, generated from the expert opinion of MDs and PharmDs.

Eric

Robin, i realize that there are no doctors here, but I also know that caregivers of LBD LO's know alot about the meds that work best for differents aliments. I do thank you for listing the meds once again.
I was trying to find out information very quickly so I could go back to the nursing home informed.

Robin and Eric, Thanks for your replies. I can't wait for Eric to compile his list because it is so very unsettling giving a medication and thinking you are doing the wrong thing. Robin, I didn't find the niaprazine on a list but it is one of those drugs ending with azine which are supposedly to be avoided. the niaprazine here in Italy is called Nopron, brand name, and that's the medication my husband takes before bed time. He doesn't take it so much to fall asleep as he's asleep before he hits the pillow but to keep him asleep as he was waking up at all hours and getting dressed. That stopped for a while but twice this past week he was up and dressed and breakfast eaten at 4 am so....I will once again mention to this fear of mine about niaprazine when I go to the neurologist next time. Thanks to both of you. Irene