Is there a list somewhere of medicines never to give to a lbd patient. I am trying to think of things that might come up in the NH. I don't want to show up one day and see that they are giving her meds for something that will make it worse. i know some meds react different for everyone but absolute not ever meds??????

There are two lists floating around here. Search for "ochsner" for one, and "contradictions" for the other. The first will return the list from a neurologist who presented at one of the LBDA symposiums, the other has a paragraph excerpt from _Seminars In Neurology_, specifically naming a few bad actors and classes of problem drugs.

In partnership with LBDA, their scientific advisory committee and a growing team of valuable partners, my first "big" project for LBDA will be to develop a list of risky drugs for LBD patients, leveraging the resources of the Scientific Advisory Committee and a proven methodology for creating consensus documents like this. I do not have a solid grasp on the timeline yet, as this is an all-volunteer effort. My goal is to publish a category or two at a time as they are reviewed by the MD/PharmD experts.

The *big* thing to avoid is anything with an anticholinergic activity; acetylcholine deficits drive LBD, anything that blocks the action or synthesis of acetylcholine is Bad News.

Eric

There are also some files on the LBDcaregivers website:
http://health.groups.yahoo.com/group/LB ... dications/

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.

While I appreciate his list, Zyprexa is getting tarred with an awfully broad brush...it's one of Dr. Boeve's preferred agents, it's been studied in PD dementia and found effective, and unlike Seroquel, it's less likely to be involved in drug-drug interactions. Goetz and Jeste have each published specifically on use of Zyprexa in PD dementia, and found the biggest risk to be worsening of motor symptoms.

All opiates are not the same, and I am not aware of any peer-reviewed published evidence that says they are any more dangerous in people with LBD than in other elderly patients. Opiate pain medications may all provide similar levels of pain relief, but they each have wacky cognitive side effects. Also, being in enough pain to need opiates can cause people to decompensate. Finally, there are substantial genetic variations in people's ability to metabolize and tolerate opiates.

Benzodiazapenes, including Ativan, are safely used in people with LBD. So "never" seems a bit strong there too. Same with Ambien - history of safe use, one of several options.

I think the "never" list as it stands right now is "anything with meaningful anticholinergic activity" and "neuroleptics". The "caution" list is much, much longer.

Eric

Thanks for the infor but now I am really confused. I did see ambien on the list of avoids why we give that to her almost every night. When Jackie came to us in August she came with Ambien and since she was not dx with LBD until last month that is just what I have been giving her. If that is one to avoid do you have any suggestions on a better sleeping pill. JAckie will not sleep with out a sleeping pill. more importantly I won't sleep with out giving JAckie a sleeping pill. Jackie had an Ambien last night 5mg she was up the entire night, I had to get up almost every 45min to an hour all night long. She talked , cried for help, even though she laying fine covers on and seemed ok. This is a women who won't speak during the day and If she does you can't hear her because she talks so low. will scream all night for help.
thanks for letting me ramble.

Eric you said search for OCHSNER and CONTRADICTIONS what did you mean by that where do I search???

Ambien is on Dr. Boeve's preferred list - so is Klonopin, which may help with the particular sleep disturbances in LBD. The sleeping pills to avoid would be tricyclic antidepressants and anything OTC, which is most likely loaded with an antihistamine with a potent anticholinergic activity.

To search, look at the top of the page; you'll see LBDA Home, FAQ, Search. Search for those terms individually, and you'll find the links to those two lists.

Eric

I am new to the Forum and was just looking at the list of bad medications and two of them, Mirapex and an antihistamine ending in izina, full name niaprrizina, are supposedly no nos. In another exchange Eric also mentioned this. Does anyone have further info or advice regarding this medications for me? The Mirapex was prescribed by my husband's neurologist for his Parkinsonism, movements, rigidity. The antihistamine to sleep better. He has, to date, not had hallucinations. Any help would be greatly appreciate. Thanks. Irene

Hi Irene,
Here is something that might be helpful to you!


There are also some files on the LBDcaregivers website:
http://health.groups.yahoo.com/group/LB ... dications/

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

Thanks Irene for this list of medications. I am concerned because my husband is taking both meripexin and a medication that ends in azine. I think I should call the neurologist tomorrow and ask. I am worrying sick that I am doing the wrong thing. I am also going to check out the website. Irene

Dear Irene,
I think that the hardest part of this illness is that no two people are alike in what one can take or another, for us Risperdal was a night mare but I know others who their LO are taking it with out problems but it is up to us the caregiver to be on top of all this.

Dear Irene, Thanks that made me feel a wee bit better. I don't want the neurologist to get angry with me if I start contradicting his medication but at the same time I need to be sure. I have tried unsuccessfuly to read the Medication article you sent the website for but I can't seem to get past the Yahoo ID process. Ciao, Irene

USE CAUTION:

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

Hi Everybody,
I found this Forum recently and am I glad! My father in law has all these symptoms and he is being treated for Parkinsons. He is on 275 mg of Carbidopa-Levodopa. He is also on Exelon to treat the dementia. He is totally bed ridden and has lost sense of time and space. The neuro physician says that Carbidopa/Levodopa should not be stopped as it will increase his stiffness. He is on physiotherapy for 6 days a week to keep him mobile. But I should say the improvement is really minimal.

Can any person have a combination of Parkinsons, Alzheimers and LBD?

Meg

Meg:

Yes, it's entirely possible to have overlaid AD with PDD/LBD. The phenomenon seems to be well-recognized in the specialist community. Fortunately, treating LBD doesn't worsen AD, nor vice versa.

As for the carbidopa/levodopa worsening hallucinations - absolutely. Further imbalances in the dopamine/acetylcholine relationship can make the cognitive problems worse. However, even the most modest benefits in flexibility and reductions in spasticity can make a big difference in the ability to care for someone in late-stage disease.

One option might be to switch from Exelon to one of the other acetylcholinesterase inhibitors (Aricept or Reminyl) to see if you get a little improvement in cognition, which, again, can help with caregiving.

Eric

Just a small bit of info on the question about whether AD can occur along with LBD or PDD. This sentence in a recent journal article on cholinesterase inhibitors is relevant: "(A)dditional AD pathology is much more frequent in DLB than in PDD."

robin:

I wondered about that myself - could it be that PD onset tends to be earlier in life, ergo, PDD is found in younger people, while LBD is typically diagnosed later, ergo, it's the baseline amount of AD that would be expected in the population? It didn't look like that review really addressed that selection bias.

Eric