Lewy Body Phrase for 10-18: Drugs and Sensitivity

No drug can cure LBD but some can treat its symptoms.

• Dementia drugs work to improve cognition and other LBD symptoms.

LBD can cause a person to be super-sensitive to certain drugs.

• 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.

Behavior management drugs are often Lewy-sensitive. Use very carefully if at all.

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.

PDD: Fighting the Odds

A recent study found that over 65% of Parkinson’s patients age 70 and older will have begun to develop Lewy body dementia, the type called “Parkinson’s disease with dementia (PDD). That's the bad news. The good news is that there are many things that PD families can do to fight those odds—to extend the years prior to its appearance and to decrease its effect even after it does show up.

1.      Accept that dementia is a likely PD symptom—sometime. Understandably, acceptance may be difficult. However, without it, you aren’t going to succeed with the other steps. You can't fight something you don't believe is an issue.

2.      Maintain a healthy life style. Stay physically, mentally and socially active and being proactive about what you eat. This is true anyone who wants to avoid any kind of dementia. (That’s all of us, right?)  You can find information about this in many places. Several books in our Book Corner discuss the importance of a healthy lifestyle, as do articles on the LBDA and Alzheimer's Assn websites. Or just google "avoiding dementia" on the internet.

3.      Be alert for drug sensitivities. The ones of most concern are inhaled anesthetics and behavior management drugs. There is a very thorough review of this problem in our book, and it should be required reading for every PD family. Be sure you know the risks before you agree to major surgery. Behavior problems related to LBD can show up long before any noticeable signs of dementia and the drugs often used to treat acting-out are among the most dangerous for a PDD patient. In fact, as LBD encroaches, drug sensitivities in general can increase and so be careful with all drugs. Start with a much lower than normal dose of, for instance, an over-the-counter cold medication or headache remedy, and work up until you get the benefit you want—or side effects you don’t.

4.      Do all you can to decrease stress. For some reason, LBD increases with stress. Identify those areas in your life that are stressful and work with your family and friends to make them less stressful. For instance, if you have communication difficulties, consider a relationship counselor so that you can smooth things out.  If your job is stressful, can you change jobs—or even retire? Reduce clutter in your home. Check light levels-many PD and LBD people are light sensitive. There are many more ways to reduce stress. Some are mentioned in our book, some in Pat Snyder’s book, others you will think of as you go along.

If you maintain a healthy lifestyle, are very careful about the drugs you use, and work diligently to keep stress levels low, you can extend the “good years” for a long time.

Drug Sensitivities--and More

As usual, when I attend a support group, I come away blessed with new ideas. Marla told how her husband, Bill, had severe nosebleeds. The ER staff couldn’t find anything wrong…nothing to cauterize… They sent him home, but the bleeds continued. It was the weekend and she couldn’t reach his doctor. Desperate, she looked for solutions. Could it be something he’s taking? Well, there’s aspirin and Plavix, both blood thinners. Why they would be causing trouble now, after 8-10 years of use, Marla couldn’t imagine. But she couldn’t find anything else to blame, and so she first stopped the aspirin; the nose bleeds continued. Then she stopped his Plavix. And viola!  No more nosebleeds!

“Why now?” she asked, voicing the question she’d had at the time. We explored the idea that Bill’s advancing LBD was the culprit, increasing his sensitivity to the Plavix, so that his usual dose became an overdose, thinning his blood far too much—thus the nose bleeds.

In our book I tell the story of my sister who had Parkinson’s and terminal cancer. She had a lot of pain. The hospice nurse gave her a small dose of morphine but she had scary hallucinations. Finally, when we cut the tiny pill into fourths, the hallucinations didn’t show up—but neither did the pain. Just that tiny amount did the job.

As LBD caregivers, we learn early to be alert for drug sensitivities—especially those behavior management drugs the ER likes to use. But we forget that there may be other sensitivities too. Most LBD folks spend a lot of time with their eyes closed or hidden by dark sunglasses to avoid a light that might not seem bright to us but is to them. Or, have you noticed that your loved one seems touchier? Their skin might be much more sensitive. Has their taste in music changed? Is loud music less attractive than it used to be?

“Oh,” said Marla, after we’d talked about this. “What about hot peppers? Bill used to love them—the hotter the better!--but he doesn’t like them anymore.” What used to be a fun “kick,” his overly sensitive body now finds just too painful to enjoy.

There is a small up-side to this. Since we are talking about a sensitivity, not an allergy, there might be medications that you thought were on the “no, no” list that you could use if you made the dose small enough. Like my sister’s morphine, a quarter of an allergy pill might do the job without harm. Of course, you’d only want to try this with drugs where there isn’t likely to be any permanent damage. And you should check with the doctor first, too!