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 Medication change 
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Joined: Thu Jan 04, 2007 5:57 pm
Posts: 3
Post Medication change
Dad has become so sensitive to any medication changes that I am afraid to try any changes but I know that he needs it. His hallucinations have become worse again. Should we increase the Excelon a small amount to see if that will work?

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Betsy


Fri Jan 05, 2007 10:50 am
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Like Irene says, we are all in the ocean, but in different boats. Every LBD pt is different. I have learned alot on this site and one thing is that Antipsychotics are medications to avoid. However, my Mom is on Effexor, Aricept, Zyprexa and Xanax. Some of these meds are not even recommended for LBD. But, sometimes you are pushed by a behavior or symptom to try something new or different. I can totally relate to your being resistant to any med changes. But at this point things are going fairly well with my Mom in regards to medications. If she started with a new problem, I would be willing to give something new a try. We did this recently with the Xanax. I was afraid to try it but glad we did. She takes a very low dose, but it helped her with the panicky, fearful feelings that I think were related to "sundowning".
Anyway, hang in there, and good luck with your Dan.
Sallyann


Sat Jan 06, 2007 11:43 pm
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Hi Sallyann,
Medications are tricky with LBD and there really are none specifically for LBD, many are trial and era, We used Seroquel with good results and yet I am in contact with many people who their LO's can't use it, for us Risperdol was a nightmare but because I was educated enough on the med issue I knew enough to get my Husband off as soon as I seen a problem, so as I have said so many times I really believe the best defense in in LBD is to educate yourself and know what some of the effects are.


Sun Jan 07, 2007 6:27 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Hi Irene!
I have been wanting to ask what you have used for your husband for anxiety/agitation. The Xanax works very well, but she is drowsy and I don't know if she is happy feeling like that and of course is unable to tell me.
Maybe the Xanax is as good as we can expect as it does work and no other side effects.
Also, did he take anything for depression? That was my LO's first symptom and she has taken the same med for years. I don't know if it helps her or not.
Sallyann


Tue Jan 09, 2007 8:06 pm
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Hi Sallyann,
Yes my husband was on anti depressents for yrs that was first DX (Depression), he took Effexor for a long time and Trazadone. I was never sure if they helped him either but we tried.


Tue Jan 09, 2007 9:30 pm

Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Irene,
What is your opinion on stopping some of the meds for my Mom? She has been on the Effexor for about 7 years. Do you think it is really doing anything for her at this point? I would not really consider changing or starting new meds, but I wonder if what she is taking is really improving her quality of life. She's hardly ever lucid, and I wonder if she would do better of the Zyprexa and Effexor.
Just wondering.......
Sallyann


Wed Jan 10, 2007 2:56 am
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Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
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Dear Friends, Meds are a major issue for all of us. The clinical literature recognizes that not all meds that work for some folks with LBD work with all - however, one of the internationally-recognized experts on LBD has written a guide to the best meds for LBD and its right on this site. Please read Dr. Boeve's articles here - and share them with your LOs' MDs. Many physicians who are knowledgeable about Alzheimer's, for example, do not understand LBD.

As for antipsychotics (or any med, for that matter), it seems simplistic to say "they're bad." Indeed, the most recently-published findings strongly suggest that use of atypical antipsychotics can be extremely helpful. The experts advise: avoid meds already known to be harmful to those with LBD; start with very low doses; change doses cautiously and slowly; observe reactions carefully; and monitor closely. Folks with neuroloical diseases of all kinds are extremely sensitive to meds and med changes - we have all seen that in our LOs.

Best wishes to all - you are each in my prayers.

Peace, Lin


Sat Jan 13, 2007 12:22 am
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Joined: Sat Aug 19, 2006 5:01 pm
Posts: 79
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Hi Lin, Irene and all,
Can anyone direct us to a site that lists meds to be avoided? I have had physicians and many people on forums that will say to avoid a certain class of drug. It makes me run and pull out the PDR to look things up because they are not specific in their recommendations. But a list of known problem meds to avoid would be much easier, especially if there are many drugs in many different classes of meds. Is it true Sinemet should be avoided? Just wondering.
Thanks,
Sallyann


Sun Jan 14, 2007 4:41 pm
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Dear Sallyann,
Hi I pulled this off the e-mail response help line for the LBDA, Hope it is helpful for you!

Lewy body dementia (LBD) can exist with no symptoms of Parkinson's
disease (PD) and for those patients the medication treatment is
easier. When you have both symptoms of Alzheimer's disease (AD) and
PD, which is the common combination, the balance of medication is more
difficult. Medications useful for PD may increase confusion, delusions
and hallucinations. Medications useful for AD may affect motor
functioning or Parkinsonian symptoms. Neuroleptic drugs, which might
be used for AD, have caused severe adverse reactions in persons with
LBD such as cognitive reduction, parkinsonism, heavy sedation, and
neuroleptic malignant syndrome. Even over-the-counter medications can
have negative affects for LBD patients. A medical professional
specializing in dementias can help determine what medication is
appropriate for the various symptoms of LBD.


Neuroleptic sensitivity, in which striking and irreversible
parkinsonism can evolve shortly after use of neuroleptics, has led to
the recommendation that conventional neuroleptics should be avoided in
patients with Lewy body dementia (LBD). For example, Haldol is known
to cause life-threatening effects in a LBD patient. Neuroleptics have
caused severe adverse reactions such as cognitive reduction,
parkinsonism, heavy sedation, and neuroleptic malignant syndrome. Even
the newer 'atypical' neuroleptics may or may not work in any given
patient although there are some reports that Seroquel, Zyprexia, and
Resperdal have been successful in treating problematic hallucinations,
delusions, or agitation in patients. However, unless it is
contraindicated, cholinesterase inhibitors such as Aricept, Exelon, or
Reminyl are recommended as the best choice for initial treatment of LBD.


Sun Jan 14, 2007 5:21 pm

Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
Post 
Dear Sallyann -

Irene gives some good insights. May I add that the "god standard" of info about meds for LBD is contained on the LBD Association website! Print out the 2 key articles by Dr. Boeve on meds and treatment for those with LBD. He is from Mayo and considered one of the finest researchers on this subject - we can all learn from him and colleagues. Many of us print out the longer article that lists recommended meds and dosages and ask our LOs" doctors to review and follow - especially when those docs may not be sufficiently familiar with LBD to know it can't be treated like Alzheiner's or other dementias. I have looked at several other other key physician-researchers articles on meds for LBD, and they all follow Dr. Boeve's lead.
WE HAVE TO ADVOCATE FOR OUR LOVED ONES ABOUT MEDS, AS MANY USED FOR OTHER DISEASES CAN DO GREAT HARM TO THOSE WITH LBD.

Also, if your LO has Parkinson's Disease or even what's called the "parkinsonism" of LBD, you would benefit from going to caregivers@forum.parkinson.org. This is the key national forum for caregivers of those with PD, which frequently has dementia (often like LBD) as one of the later aspects. One of the folks there has compiled a long list of meds to avoid in PD and parkinsonism. She pulled the list together from the advice provided by the doctors at the National Parkinson's Foundation, again, leaders in their field. They often write about treating the dementia of PD as well as the movement problems. Just use "The List" in the subject line of your e-mail, give your e-mail address, and ask to have the info e-mailed to you. It prints out as a Word document. Again, it's good to use as a reference and share with the MD.
It seems that a number of meds not good for PD also aren't good for those with LBD - similar neurological problems and similar sensitivities to meds.

Please write again and let us know how you are doing.

Peace, Lin


Sun Jan 14, 2007 6:21 pm
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