(Some words are italicized the first time they appear. These are defined below this post.)
Way back in 2008, we had a friend, Bob, whose father had LBD. Dad also had excessive daytime sleeping (EDS), a common LBD symptom. His doctor prescribed Provigil and it did keep Dad awake more. But Bob insisted that it made his dad more alert too. "It even stopped most of his hallucinations," Bob told us.
We knew that Provigil was a psycho-stimulant, a brain stimulating drug approved for use with EDS, and so it was an appropriate drug for Dad's excessive daytime sleeping. We also knew that college students have used it and other psycho-stimulants, like Ritalin and Adderall, to help them stay awake and cram for tests and so the idea that it improved Dad's cognition wasn't off the wall. Of course, this off-label (and often non-prescription!) use by healthy students is not encouraged. But might its use by someone like Bob's dad be very helpful for more than just EDS? Some people thought so, but there was little if any scientific proof.
Fast forward to 2017 and two articles, one about the generic Provigil, modafinil, and another about its close cousin, Nuvigil. In the first, researchers used MRI imaging of the brain to find out if and in what areas of the brain, modafinil caused increased activity. In the second, researchers explored the effectiveness, safety and tolerability of Nuvigil when used for EDS associated with dementia with Lewy bodies (DLB).
It is believed that Provigil and its close cousin, Nuvigil, both work by improving the function of dopamine. Dopamine in the midbrain acts to control mobility as any PD care partner knows. But in other parts of the brain, it facilitates cognitive functions. Researchers in the first study found that modafinil significantly increased activity in the areas of the brain controlling vision, attention, inhibition and the working memory.
This not only supports the theory about how Provigil works. It shows how Provigil likely helped those those college students to focus better and have better access to the thinking skills that operate in their working memory. And it looked like Bob could be right in his claim that Provigil was the cause for the improvement of his dad's hallucinations and his better alertness. But did any of this last?
Probably not. The first study was done with only one dose per subject and so continuity was not an issue. However, the researchers in the second article did administer Nuvigil for various periods of time but they found no improvement in cognitive function. The critical term here is "over time." The college kids didn't get smarter over time either. Their skills were simply improved temporarily, long enough for them to get through their tests. Even without the other issues, that's a good reason to discourage this practice. For the student's learning to be useful in the future, it needs to last, not disappear after a quick short-term boost!
It is admittedly different for a person with dementia, where any boost, even short term, is welcome. However, its lack of improvement over time is likely why doctors seldom prescribe it off label to assist FDA approved dementia drugs. Of course, LBD is very individual. Maybe in Bob's dad's case, it did last longer.
But are these drugs safe? The researchers in the second article found that the drug was reasonably safe for people living DLB. Thus it is probably equally safe for someone living with PDD. Addiction is always a concern with any psycho-stimulant, but since Provigil and its relatives have a different action than most other stimulants, this really isn't an issue for them. In addition, when considering a drug you don't plan to stop, addiction becomes less important.
Side effects for these drugs are usually mild but even so, people with a history of heart disease or arrhythmia should avoid stimulants in general, including these. The most common side effects are GI related: nausea, dry mouth, anorexia and diarrhea.
Nuvigil is made by a different company than Provigil. While its slightly different formula provides the same general action, it is milder and longer acting.That is, if a person was taking two 100mg doses of Provigil per day , they'd need to take one 250mg dose per day of Nuvigil for the same effect. Likely due to Nuvigil's longer and milder action, doctors usually prefer it over Provigil and thus, so do insurance companies. If your insurance doesn't cover this drug, or if the co-pay is high, do ask about generic Provigil. It will be much less expensive. Nuvigil doesn't come in a generic form.
The bottom line is that these drugs are reasonably safe, work well for EDS and may provide an extra short-term bonus of better cognition and/or fewer hallucinations to some people.
armodafinil: The generic name for Nuvigil
DLB: Dementia with Lewy bodies. The Lewy body dementias that starts with cognition issues.
dopamine: A neurotransmitter that facilitates mobility and cognition
EDS: Excessive daytime sleeping. A DLB symptom identified in the official diagnosis criteria.
generic: Non-brand drug name
GI: Gastro-intestinal, concerning the stomach and intestines
modafinil: The generic name for Provigil and for the less expensive generic Provigil
Nuvigil: A milder and longer acting cousin of Provigil. Not available as a generic.
off-label: Used for a condition that the drug is not approved for.
PD: Parkinson's disease, a Lewy body disease and often, a predecessor of LBD
PDD: Parkinson's disease with dementia. The Lewy body dementia that starts with motor issues.
Provigil: A drug accepted by the FDA for treatment of EDS.
psycho-stimulant: brain (psycho)-stimulating drug
working memory: used for holding data while performing thinking skills
The two articles:
Punzi, M. et al. (2017) Modafinil-Induced Changes in Functional Connectivity in the Cortex and Cerebellum of Healthy Elderly Subjects. Frontiers in aging neuroscience, 9, 85. doi:10.3389/fnagi.2017.00085
Lapid, M. Boeve, B. et. al. (2017). Efficacy, Safety, and Tolerability of Armodafinil Therapy for Hypersomnia Associated with Dementia with Lewy Bodies: A Pilot Study. Dementia and geriatric cognitive disorders, 43(5-6), 269-280. https://www.karger.com/Article/FullText/471507
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Responsive Dementia Care: Fewer Behaviors Fewer Drugs
Riding A Roller Coaster with Lewy Body Dementia: A Manual for Staff
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
Showing posts with label drugs. Show all posts
Showing posts with label drugs. Show all posts
Friday, February 15, 2019
Wednesday, October 18, 2017
Lewy Body Phrase for 10-18: Drugs and Sensitivity
No drug can cure LBD but some can treat its symptoms.
Drugs for other symptoms should be reviewed for Lewy-sensitivity before use. (LBDA Medications Glossary)
All drugs should be started in the smallest dose possible, increased until they do the job or cause problems, and stopped when no longer needed.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
- Dementia drugs work to improve cognition and other LBD symptoms.
- Which drugs are "Lewy-sensitive" for each person is very individual.
- Lewy-sensitive drugs act as though the person had a much larger dose than normal, with often severe results.
Drugs for other symptoms should be reviewed for Lewy-sensitivity before use. (LBDA Medications Glossary)
All drugs should be started in the smallest dose possible, increased until they do the job or cause problems, and stopped when no longer needed.
For more information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
Friday, October 7, 2016
FDA Fast Track and LBD Drugs
Our 3 for 2 book special honoring the 2016 World Parkinson's Congress. Good until Nov, 1, 2016.
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FDA Fast Track and LBD Drugs
Axovant is requesting FDA Fast Track status for their experimental drug, RVT-101, for use with DLB.* This drug enhances the release of acetylcholine and has already been tested for use as an add-on treatment with Aricept for AD patients, with positive results. Axovant is presently looking for people diagnosed with DLB to participate in clinical trials. Contact them here if you are interested.The FDA Fast Track program is a government program designed to facilitate the development, of drugs to treat serious conditions. This program can cut years off the time before a drug is ready for the market. Drugs to treat Alzheimer’s and Parkinson’s have been placed on Fast Track but so far, none to treat LBD.* RVT-101 would be the first.
Even with Fast Track, the time between the discovery of a new drug and its appearance on the market can be long. For example, Biogen’s aducanumab (BIIB037-bib-037) is a special human antibody designed to target amyloid plaques in Alzheimer’s patients. Antibodies are a part of the body’s natural garbage removal process. Researchers hope to prove that this drug safely facilitates the early removal of these plaques. The studies so far are showing this to be so. However, clinical trials have been going on since 2005. Results from Phase 3 trials, which started in 2015 aren’t in yet....i.e, it has been ten years since the first clinical trials and it is still not ready for market.
Unlike BIIB037, which attacks the cause of the problem, RVT-101 attempts to slow down a disease process that has already gotten such a head start that it cannot be stopped. While this has obvious value for those patients presently dealing with LBD, I wish we could see more focus on, and even Fast Track status, for LBD drugs such as Nilotinib (Tasigna—Tah-sig-na).
Like BIIB037, Tasigna works by improving the function of the body’s natural garbage disposal system, thus decreasing the production and spread of Lewy bodies. With intervention coming much earlier in the progression of the disease, there is hope for better results and even the possibility of an eventual cure. Because this is a cancer drug, already approved by the FDA for use with humans, the testing period is shorter. However, don’t expect it to be available for several years. Researchers are planning a double blind clinical trial to test safety and efficacy with Parkinson’s and DLB patients, to begin in 2017. Contact the Michael J Fox Foundation if you are interested in participating.
There are some concerns about Fast Tracking new drugs. Serious side effects may not be discovered before they are being used by the general public. With LBD's already serious drug issues, that could be a concern. And so, it is an ongoing conflict: We'd like to see these drugs that address the initiating problems in use as quickly as possible...but we don't want to see more drug sensitivity problems either. What do you think?
* Acronyms:
LBD: Lewy body dementia
PlwD: person living with dementia
PlwLBD: person living with LBD
DLB: dementia with Lewy bodies
PDD: Parkinson's disease with dementia
MCI: mild cognitive impairment
MCI-LB: the form of MCI that precedes LBD
BPSD: behavioral and psychological symptoms of dementia
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson's and Lewy Body Dementia
Helen and James Whitworth are not doctors, lawyers or social workers. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a professional's advice.
Friday, September 11, 2015
Generic Drugs
LBD caregivers are usually very aware of their loved one’s drug sensitivities. You avoid those drugs that you know can cause problems even if they haven’t for your loved one. You know your loved one can be sensitive to almost anything and so you monitor every new drug carefully. But what about generic drugs? Do you use generic drugs? Do you monitor each new generic version of an old, trusted drug as carefully as you would a new drug?
You should. Generic drugs are required to be the same as the brand name drug they replace “in all ways that matter.” Generic drugs can use different dyes, filling agents, chemical binders or coatings. Although the drug company must show that these differences are “trivial.” However, what is and isn’t trivial for an individual, especially one with the severe sensitivities that LBD imposes can differ widely.
I first came across this years ago when my sister, Lucille, who had PD, broke out in a rash after taking a generic drug for migraines. When she went back to the brand name drug, her rash disappeared. Over the years, Lucille learned that she was likely to react in some negative way to many generics. Her doctor explained that she appeared to be super sensitive to certain fillers or other non-regulated parts of generic drugs and that she should avoid them. Because these ingredients are not regulated, they are not shown on the labels; thus Lucille had no way of knowing what she was sensitive to.
Kathy’s husband, Jerry, has DLB. He too reacted poorly to generics. He’d been taking Seroquel to successfully stop his frightening hallucinations. They tried a generic, but it didn’t work. In fact, it made the hallucinations worse. However, their pharmacist suggested they try a different generic brand before they returned to the more expensive brand name product. It worked well. Later, during an after-hospital stay in rehab, Jerry started hallucinating again. Kathy checked with the nurse and sure enough, the nursing home was using a different generic. They allowed Kathy to bring in the prescription bottle from home and they used that kind the following night. The next day, everyone commented about the unbelievable difference.
The bottom line is that all generics are not the same. If like Lucille, you can’t find a safe one, you may be better off using brand name drugs. However, if you can find a helpful pharmacist, you may be able to find a generic that works as well as the brand name drug. The difference in price definitely makes the effort worthwhile.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
You should. Generic drugs are required to be the same as the brand name drug they replace “in all ways that matter.” Generic drugs can use different dyes, filling agents, chemical binders or coatings. Although the drug company must show that these differences are “trivial.” However, what is and isn’t trivial for an individual, especially one with the severe sensitivities that LBD imposes can differ widely.
I first came across this years ago when my sister, Lucille, who had PD, broke out in a rash after taking a generic drug for migraines. When she went back to the brand name drug, her rash disappeared. Over the years, Lucille learned that she was likely to react in some negative way to many generics. Her doctor explained that she appeared to be super sensitive to certain fillers or other non-regulated parts of generic drugs and that she should avoid them. Because these ingredients are not regulated, they are not shown on the labels; thus Lucille had no way of knowing what she was sensitive to.
Kathy’s husband, Jerry, has DLB. He too reacted poorly to generics. He’d been taking Seroquel to successfully stop his frightening hallucinations. They tried a generic, but it didn’t work. In fact, it made the hallucinations worse. However, their pharmacist suggested they try a different generic brand before they returned to the more expensive brand name product. It worked well. Later, during an after-hospital stay in rehab, Jerry started hallucinating again. Kathy checked with the nurse and sure enough, the nursing home was using a different generic. They allowed Kathy to bring in the prescription bottle from home and they used that kind the following night. The next day, everyone commented about the unbelievable difference.
The bottom line is that all generics are not the same. If like Lucille, you can’t find a safe one, you may be better off using brand name drugs. However, if you can find a helpful pharmacist, you may be able to find a generic that works as well as the brand name drug. The difference in price definitely makes the effort worthwhile.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Friday, April 3, 2015
When Drugs Might be Helpful
Anyone who has read our books, especially the last one, Managing Cognitive Issues in Parkinson's and Lewy Body Dementia, knows that we advocate minimal use of drugs. However, there are times when they can be helpful and should be considered. This goes with several caveats, however.
No two people with Lewy body disorders can be expected to respond the same to any drug. Each new drug is an "experiment." Reactions vary greatly, from tolerating a drug well to being unable to use it at all. Most drugs should be:
Lewy bodies tend to cause a person to become sensitive to certain drugs. Literature reports that at least 50% of PwLBD will be drug sensitive. From listening to thousands of caregivers in person and online, we believe that percentage is much higher. However, drug sensitivity:
The progress of the disorder can cause a person's response to a drug to change. A drug that once was helpful may become ineffective, or worse, begin to cause negative side effects. Therefore, all drugs should be reviewed every few months.
Last but not least, in most cases, non-drug remedies should be tried first, before any drug is tried. Reducing stress and keeping your loved one as healthy as possible, will solve many problems without resorting to drugs.
That said, here are some situations where we believe drugs ARE helpful:
Dementia drugs can temporarily improve cognition. They can also decrease non-cognitive symptoms, such as hallucinations, delusions. anxiety and agitation. In addition, they are fairly safe. The most troublesome side-effects are GI discomfort. The doctor may have to try more than one to get a good fit.
Drugs, like antibiotics, used to fight infections are not only fairly safe, they can be life-saving. This is one instance where the doctor may need to prescribe a large enough dose to fight the infection and may not be able to start small. These drugs should only be used if an infection is present. Home remedies are better for prevention: cranberry juice to prevent UTI's, proper drinking procedures to prevent aspiration leading to pneumonia, etc.
Not everything is caused by Lewy bodies! Drugs may be needed for other issues such as heart problems, diabetes, or depression. These illnesses can usually be treated safely, but the drugs used should be reviewed. The doctor will likely want to replace any likely to cause symptoms of sensitivity with safer drugs.
When every non-medical remedy has been tried and the PwLBD is still agitated, difficult to deal with or uncomfortable, then behavior management drugs may be helpful. "Uncomfortable" is probably the most important. For example, if your loved one is not upset about having hallucinations but you are, this is NOT a reason to medicate. Your loved one will only have a problem if you make it one.
Some events, such as a move into residential care, are going to be anxiety-ridden no matter what you do. Anxiety is like pain. If you treat it before it takes on a life of its own, you don't have to use nearly as many drugs for the same--or better--effect. Many Lewy-savvy doctors will prescribe a tiny amount of a weak behavior management drug for a few days to a week before the event and, if adjustment is involved, for a week or so after the event.
Caregiver stress, depression and burnout are all mirrored by loved ones who reflect them back with difficult behavior. Don't feel embarrassed to ask your doctor for a mild antidepressant--that is for you, not your loved one. While non-medical stress management tools can and do help, if you let it go too long, you may need a medical boost, to get you where you can use them. Remember, the better you feel, the better your loved one feels.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
No two people with Lewy body disorders can be expected to respond the same to any drug. Each new drug is an "experiment." Reactions vary greatly, from tolerating a drug well to being unable to use it at all. Most drugs should be:
- started in very small doses,
- monitored carefully and
- stopped if unwanted reactions appear.
Lewy bodies tend to cause a person to become sensitive to certain drugs. Literature reports that at least 50% of PwLBD will be drug sensitive. From listening to thousands of caregivers in person and online, we believe that percentage is much higher. However, drug sensitivity:
- is different from an allergy, where even a small dose may cause a severe reaction.
- causes a person to react to a normal doses as though it were an overdose. In many cases, a smaller dose may be tolerated.
- symptoms of overdose vary depending on the drug and the individual, but include muscle problems, increased or new behaviors, heavy sedation, and confusion.
The progress of the disorder can cause a person's response to a drug to change. A drug that once was helpful may become ineffective, or worse, begin to cause negative side effects. Therefore, all drugs should be reviewed every few months.
Last but not least, in most cases, non-drug remedies should be tried first, before any drug is tried. Reducing stress and keeping your loved one as healthy as possible, will solve many problems without resorting to drugs.
That said, here are some situations where we believe drugs ARE helpful:
Dementia drugs can temporarily improve cognition. They can also decrease non-cognitive symptoms, such as hallucinations, delusions. anxiety and agitation. In addition, they are fairly safe. The most troublesome side-effects are GI discomfort. The doctor may have to try more than one to get a good fit.
Drugs, like antibiotics, used to fight infections are not only fairly safe, they can be life-saving. This is one instance where the doctor may need to prescribe a large enough dose to fight the infection and may not be able to start small. These drugs should only be used if an infection is present. Home remedies are better for prevention: cranberry juice to prevent UTI's, proper drinking procedures to prevent aspiration leading to pneumonia, etc.
Not everything is caused by Lewy bodies! Drugs may be needed for other issues such as heart problems, diabetes, or depression. These illnesses can usually be treated safely, but the drugs used should be reviewed. The doctor will likely want to replace any likely to cause symptoms of sensitivity with safer drugs.
When every non-medical remedy has been tried and the PwLBD is still agitated, difficult to deal with or uncomfortable, then behavior management drugs may be helpful. "Uncomfortable" is probably the most important. For example, if your loved one is not upset about having hallucinations but you are, this is NOT a reason to medicate. Your loved one will only have a problem if you make it one.
Some events, such as a move into residential care, are going to be anxiety-ridden no matter what you do. Anxiety is like pain. If you treat it before it takes on a life of its own, you don't have to use nearly as many drugs for the same--or better--effect. Many Lewy-savvy doctors will prescribe a tiny amount of a weak behavior management drug for a few days to a week before the event and, if adjustment is involved, for a week or so after the event.
Caregiver stress, depression and burnout are all mirrored by loved ones who reflect them back with difficult behavior. Don't feel embarrassed to ask your doctor for a mild antidepressant--that is for you, not your loved one. While non-medical stress management tools can and do help, if you let it go too long, you may need a medical boost, to get you where you can use them. Remember, the better you feel, the better your loved one feels.
For information about Lewy body disorders, read our books:
A Caregivers’ Guide to Lewy Body Dementia
Managing Cognitive Issues in Parkinson’s & Lewy Body Dementia
Helen and James Whitworth are not doctors. As informed caregivers, they share the information here for educational purposes only. It should never be used instead of a physician's advice.
Friday, August 1, 2014
Learning Curves
We are doing our usual summer exodus, escaping Arizona’s heat and traveling mostly in the Pacific Northwest. This year is all about learning curves. We traded Rex (our faithful old 1994 Rexhall motor home) in on a new, to us, 2008 Georgetown motor home. And now we are learning how to operate it! There was the “secret” switch that allowed the propane to flow—or not. There was the fridge that sometimes ran and sometimes didn’t; again, a “secret” switch that the repairman showed us how to work. New places to store items—where’s this? Who knows? Where’s that? Who knows? It will all work out, but it takes time—and patience.
We’d just settled into our space in an RV park when Dave came over to talk to us. We both had Georgetowns—but then we found out that his wife, Betty (Bet) had LBD and so we ended up spending an afternoon visiting with the couple. They are experiencing a learning curve too. Learning how to deal with a degenerative disorder is not new to them—Bet has had PD for several years. They’d developed a happy lifestyle. Sold their big home and moved into a smaller home—the Georgetown—and started traveling to all the places on their “bucket list.” Got a tandem bike so Bet could exercise more easily. And generally adjusted their lives to fit Bet’s physical restrictions and keep her active longer.
But then she was diagnosed with LBD a few months ago. She doesn’t talk much anymore, choices are harder and judgment is poor now. She has hallucinations and Active Dreams. Bet is handling this fairly well (The apathy that accompanies LBD can actually be a blessing—things that once would have been devastating are now taken in stride.)
Dave, on the other hand, is having a hard time. He doesn’t mind helping her physically and he’s willing to make the decisions. But there are other issues that aren’t so easy. Take medications for instance. Like many LBD families, Dave and Bet have several doctors—a neurologist, a primary care physician and even a psychologist. The psychologist is actually a great idea for any couple dealing with the life stresses and changes that LBD brings.
As is often the case, these professionals have different views of what is needed for treatment. In this case, the psychologist suggested decreasing her Serequel dosage. Serequel IS a “black label” drug, meaning that people who use it are more likely to die sooner than people who don’t, usually from heart problems or pneumonia. It is also one of the most effective drugs for use with LBD symptoms like hallucinations and Active Dreams. Therefore, physicians and families must balance its advantages and disadvantages and choose what seems to be best for the individual situation.
“What does she take the Serequel for?” we asked.
“Hallucinations,” Dave replied. But even the bigger dose doesn’t seem to do much good.”
“Do they bother Bet?”
“No, they don’t seem to bother her much at all. It’s me they bother!”
“Hmm. Sounds like it’s you that needs the medication, then, not her! As long as hallucinations aren’t frightening or upsetting, it’s best to ignore them or just flow with them.”
Dave laughs and agrees that he is still in a learning curve and needs to work on what’s acceptable and what isn’t. Like us with our new RV, it all takes time and patience. Dave plans to talk to the neurologist soon about dropping the Serequel, at least for now. More about Dave and Bet next week!
For more about drugs and LBD, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.
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| A selfie with Jim, Dave and Helen |
But then she was diagnosed with LBD a few months ago. She doesn’t talk much anymore, choices are harder and judgment is poor now. She has hallucinations and Active Dreams. Bet is handling this fairly well (The apathy that accompanies LBD can actually be a blessing—things that once would have been devastating are now taken in stride.)
Dave, on the other hand, is having a hard time. He doesn’t mind helping her physically and he’s willing to make the decisions. But there are other issues that aren’t so easy. Take medications for instance. Like many LBD families, Dave and Bet have several doctors—a neurologist, a primary care physician and even a psychologist. The psychologist is actually a great idea for any couple dealing with the life stresses and changes that LBD brings.
As is often the case, these professionals have different views of what is needed for treatment. In this case, the psychologist suggested decreasing her Serequel dosage. Serequel IS a “black label” drug, meaning that people who use it are more likely to die sooner than people who don’t, usually from heart problems or pneumonia. It is also one of the most effective drugs for use with LBD symptoms like hallucinations and Active Dreams. Therefore, physicians and families must balance its advantages and disadvantages and choose what seems to be best for the individual situation.
“What does she take the Serequel for?” we asked.
“Hallucinations,” Dave replied. But even the bigger dose doesn’t seem to do much good.”
“Do they bother Bet?”
“No, they don’t seem to bother her much at all. It’s me they bother!”
“Hmm. Sounds like it’s you that needs the medication, then, not her! As long as hallucinations aren’t frightening or upsetting, it’s best to ignore them or just flow with them.”
Dave laughs and agrees that he is still in a learning curve and needs to work on what’s acceptable and what isn’t. Like us with our new RV, it all takes time and patience. Dave plans to talk to the neurologist soon about dropping the Serequel, at least for now. More about Dave and Bet next week!
For more about drugs and LBD, read our books, A Caregiver’s Guide to Lewy Body Dementia and Managing Cognitive Issues in Parkinson’s and Other Lewy Body Disorders, both available on our website, LBDtools.com.
Friday, August 23, 2013
Part 6: LBD and PD Drugs
We could call this blog and the next one “The Balancing Act” because they are about two groups of drugs whose actions are polar opposites of each other. Today’s blog is about PD drugs. Next week’s will be about dementia drugs. Be sure to read both blogs—they go together but there was just too much information for a single blog.
No drug will cure PD or LBD—or any other neurological disorder for that matter. However, they do treat the symptoms and that adds to one’s quality of life. Both groups are well known to LBD families, especially those with PDD, where the dementia was preceded by the motor problems of Parkinson’s disease.
Lewy bodies attack brain cells and extract chemicals the brain cells use to transmit information (neurotransmitters). In the mid-brain, they remove dopamine, needed for good motor functioning. In the cerebral cortex, they target acetylcholine, needed for good mental functioning. These two chemicals operate on a ratio system. If the level of acetylcholine is higher than that of dopamine, the body acts as though the dopamine level is too low—with poor motor functioning. Conversely, if the level of dopamine is higher, the body acts as though the acetylcholine level is too low—with poor cognitive functioning.
PD meds that are too strong will improve mobility but decrease cognition.

Dementia meds that are too strong will improve cognition but decrease mobility.
Drugs used to treat PD act to change the dopamine/acetylcholine ratio in four ways:
Dopamine replacement: Sinemet has been the most commonly used PD drug for years. It effectively controls motor symptoms with few short-term side effects. However, its long terms side effects such as muscle rigidity and confusion can be serious.
Dopamine copying or mimicking: Requip, Mirapex and Neupro are in a newer group called dopamine agonists. They cause fewer long term problems and are now usually prescribed first with Sinemet added, if needed, for better control. Short term side effects include increased confusion and hallucinations. These drugs are not recommended for anyone with dementia.
Dopamine preservation: The following drugs all act in various ways to preserve the level of dopamine in the cells. Physicians usually prescribe these weaker drugs to boost the effectiveness of Sinemet.
Symmetrel has side effects include increased psychiatric symptoms and anxiety. It is not recommended for anyone with psychiatric symptoms (or LBD-related symptoms such as hallucinations or delusions.)
Eldepryl and Azilect are new, still controversial, drugs. They don’t appear to have any serious cognitive side effects.
Tasmar and Comtan are drugs that inhibit a chemical that helps to move dopamine out of the brain cells. They do not appear to have any serious cognitive side effects.
Acetylcholine blocking: Cogentin and Artane are anticholinergics that maintain the balance by blocking acetylcholine and preventing it from being effective. Motor functioning may improve, cognitive symptoms will likely increase. These drugs are rarely used today.
The bottom line is that PD drugs strong enough to improve motor function tend to increase dementia symptoms. Next week’s blog will explain how dementia drugs strong enough to treat dementia may increase PD symptoms. Families and physicians usually have to look for a happy medium, giving up some mobility to maintain cognition or vice versa. Most families opt for more cognition.
The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.
No drug will cure PD or LBD—or any other neurological disorder for that matter. However, they do treat the symptoms and that adds to one’s quality of life. Both groups are well known to LBD families, especially those with PDD, where the dementia was preceded by the motor problems of Parkinson’s disease.
Lewy bodies attack brain cells and extract chemicals the brain cells use to transmit information (neurotransmitters). In the mid-brain, they remove dopamine, needed for good motor functioning. In the cerebral cortex, they target acetylcholine, needed for good mental functioning. These two chemicals operate on a ratio system. If the level of acetylcholine is higher than that of dopamine, the body acts as though the dopamine level is too low—with poor motor functioning. Conversely, if the level of dopamine is higher, the body acts as though the acetylcholine level is too low—with poor cognitive functioning.
PD meds that are too strong will improve mobility but decrease cognition.

Dementia meds that are too strong will improve cognition but decrease mobility.
Drugs used to treat PD act to change the dopamine/acetylcholine ratio in four ways:
Dopamine replacement: Sinemet has been the most commonly used PD drug for years. It effectively controls motor symptoms with few short-term side effects. However, its long terms side effects such as muscle rigidity and confusion can be serious.
Dopamine copying or mimicking: Requip, Mirapex and Neupro are in a newer group called dopamine agonists. They cause fewer long term problems and are now usually prescribed first with Sinemet added, if needed, for better control. Short term side effects include increased confusion and hallucinations. These drugs are not recommended for anyone with dementia.
Dopamine preservation: The following drugs all act in various ways to preserve the level of dopamine in the cells. Physicians usually prescribe these weaker drugs to boost the effectiveness of Sinemet.
Symmetrel has side effects include increased psychiatric symptoms and anxiety. It is not recommended for anyone with psychiatric symptoms (or LBD-related symptoms such as hallucinations or delusions.)
Eldepryl and Azilect are new, still controversial, drugs. They don’t appear to have any serious cognitive side effects.
Tasmar and Comtan are drugs that inhibit a chemical that helps to move dopamine out of the brain cells. They do not appear to have any serious cognitive side effects.
Acetylcholine blocking: Cogentin and Artane are anticholinergics that maintain the balance by blocking acetylcholine and preventing it from being effective. Motor functioning may improve, cognitive symptoms will likely increase. These drugs are rarely used today.
The bottom line is that PD drugs strong enough to improve motor function tend to increase dementia symptoms. Next week’s blog will explain how dementia drugs strong enough to treat dementia may increase PD symptoms. Families and physicians usually have to look for a happy medium, giving up some mobility to maintain cognition or vice versa. Most families opt for more cognition.
The authors of this blog are not physicians. We report what we and other caregivers have learned by experience, from physicians and from the literature. This blog is informational only. You should always talk with a physician about individual issues.
Friday, August 2, 2013
LBD and Drugs, Part 3: Over The Counter Drugs
Just because a drug does not require a prescription does not make it safe for someone with LBD. While it is true that they are usually milder than prescription drugs, they can still cause problems. Many OTC cold and allergy drugs have benzodiazepines in their active ingredients. Less often, they have other seditives or anticholinergics. (See the July 17th blog for more about these dangerous drug classes.) Any of these drugs may trigger intense reactions, such as active dreams, hallucinations, delusions or general confusion. A person's first exposure to drug sensitivity may be with one of these OTC drugs.
I was diagnosed with RBD (Active Dreams) last fall. Sometimes I’d wake Jack but the dreams were mild. For years, I’ve used a mild antihistamine for spring allergies with good results. When they showed up last spring, I took my usual OTC allergy pill and went to bed. I had really scary dreams all night long and was so active that Jack escaped to the sofa. I didn’t take any more of that drug and the dreams reverted to their former benign state. –Shannon
As was the case for Shannon, reactions to these milder medications are seldom permanent. However, they can serve as a warning. People seldom know that they are sensitive to a drug until they take it and have a reaction--and then the damage may be done. Shannon and Jack have been forewarned. They can assume that she is also sensitive to other, more dangerous drugs and stay away from them, thus avoiding the problems they can cause.
With these drugs, the buyer takes on more responsibility. You don’t have a doctor telling you what to buy. You choose from a shelf filled with similar drugs and hope it is the best one for the problem. Add Lewy’s sensitivity issues, and your job gets even harder.
Reading labels is a must. Avoid any drugs with active ingredients on the benzodiazepine or anticholinergic lists. (Mostly these drugs will be benzodiazepines.)
An easy way to identify unsafe drugs: If you recognize an unsafe drug on the shelf, compare its active ingredients to those of other drugs. If the new drug has some of the same ingredients, it is likely unsafe too.
Check it out. Once you’ve chosen a drug, take it to the pharmacist and ask if it is compatible with Lewy body dementia. If the drug is for someone who only at risk for LBD, there may already be a Lewy-based sensitivity. It’s a good idea to check with the doctor as well to make sure that this drug is not only safe with Lewy but also with any other drugs the Lewy partner is taking.
Start with a smaller than normal dose. Very likely that will do the job and it is less apt to cause problems.
Stop the drug immediately if you see unwanted symptoms.
Keep lists of unsafe drugs handy. The list on LBDtools includes links to all the other sites. Keep the LBDA wallet card handy for your own reference as well as for doctors and nurses:
The authors of this blog are not physicians. They are caregivers and report what they and other caregivers have learned by experience, from physicians and from the literature. You should always talk with a physician about individual issues.
I was diagnosed with RBD (Active Dreams) last fall. Sometimes I’d wake Jack but the dreams were mild. For years, I’ve used a mild antihistamine for spring allergies with good results. When they showed up last spring, I took my usual OTC allergy pill and went to bed. I had really scary dreams all night long and was so active that Jack escaped to the sofa. I didn’t take any more of that drug and the dreams reverted to their former benign state. –Shannon
As was the case for Shannon, reactions to these milder medications are seldom permanent. However, they can serve as a warning. People seldom know that they are sensitive to a drug until they take it and have a reaction--and then the damage may be done. Shannon and Jack have been forewarned. They can assume that she is also sensitive to other, more dangerous drugs and stay away from them, thus avoiding the problems they can cause.
With these drugs, the buyer takes on more responsibility. You don’t have a doctor telling you what to buy. You choose from a shelf filled with similar drugs and hope it is the best one for the problem. Add Lewy’s sensitivity issues, and your job gets even harder.
Reading labels is a must. Avoid any drugs with active ingredients on the benzodiazepine or anticholinergic lists. (Mostly these drugs will be benzodiazepines.)
An easy way to identify unsafe drugs: If you recognize an unsafe drug on the shelf, compare its active ingredients to those of other drugs. If the new drug has some of the same ingredients, it is likely unsafe too.
Check it out. Once you’ve chosen a drug, take it to the pharmacist and ask if it is compatible with Lewy body dementia. If the drug is for someone who only at risk for LBD, there may already be a Lewy-based sensitivity. It’s a good idea to check with the doctor as well to make sure that this drug is not only safe with Lewy but also with any other drugs the Lewy partner is taking.
Start with a smaller than normal dose. Very likely that will do the job and it is less apt to cause problems.
Stop the drug immediately if you see unwanted symptoms.
Keep lists of unsafe drugs handy. The list on LBDtools includes links to all the other sites. Keep the LBDA wallet card handy for your own reference as well as for doctors and nurses:
The authors of this blog are not physicians. They are caregivers and report what they and other caregivers have learned by experience, from physicians and from the literature. You should always talk with a physician about individual issues.
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