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 question about galantimine and like drugs 
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post question about galantimine and like drugs
hubby is on 24 mlg of galantamine... the doc reiterated again this time, this is not curing him.. its only a facade.. he is continuing the process of lewy body...but hopefully this will help him with his cognitive ability.... i understood. however today i have a few questions and i hope they are not too dumb... :oops:

as the condition continues, will the galantamine just stop helping as much ? do folks stay on it forever..???. if this is keeping them cognitive.. but the disease is still advancing, does the disease just over ride the good, that the galantamine is doing ???.. how do you then know what stage, you could possibly be in, while taking this ??

the doc ran some tests this time and i thought he was having a fairly good day, cognitively.. but he answered only one question, right.. is that test a good judge or is it skewed by the glantamine also??

again sorry, this is probably an silly question.... i just have never seen it discussed or i missed it??
thank you...

also i wrote a while back, concerned about day care and how to get him to agree..

well after the test, va approved him for three days a week... i had already looked at places and so we went out on a small interview/ visit last week. we were going under the presumption of needing physical therapy and also some social stimulation, as the docs had suggested... it didnt work..!!!! he was furious.. i tried everything, including i need some time and it would help me.. .. he is still angry today and it been 4 days.. i called the day care yesterday and asked for ideas and have not heard back, yet...

so this is a double sided question, or 5.. LOL any ideas on this would be appreciated too..

thank you again~~

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Oct 29, 2011 7:29 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: question about galantimine and like drugs
You asked: "as the condition continues, will the galantamine just stop helping as much ? do folks stay on it forever..???. if this is keeping them cognitive.. but the disease is still advancing, does the disease just over ride the good, that the galantamine is doing ???.. how do you then know what stage, you could possibly be in, while taking this ??"

In most people with dementia, the medications stop working after awhile. If there are absolutely no cholinergic neurons left in the brain, then there's nothing for the medication to work on.

Many LBDers stay on these meds until death. One reason is if the medication helps with hallucinations...people can experience hallucinations until death. Another reason is that, for many, it seems too risky to remove the medication. (This is discussed at some length in other posts.)

I wouldn't really consider an AChEI (such as galantamine) as skewing a test result. You'd have to look up why galantamine was FDA approved to treat AD. The medication might help with MMSE score results in those with mild to moderate dementia. The medication might help with ADLs in those with mild to moderate dementia.


Sat Oct 29, 2011 9:19 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: question about galantimine and like drugs
thanks robin..

maybe skewing wasnt the right word.. :?: i meant with someone taking the drugs, would they do better on the tests..than they really were?? or would the test be a more accurate reading of their real condition...??

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sat Oct 29, 2011 9:45 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: question about galantimine and like drugs
More than likely, there are studies that show galantamine (Razadyne is the brand name) improves MMSE scores for those with mild to moderate dementia. None of the AChEIs is supposed to do anything for MMSE scores of those with severe dementia. Does your husband have severe dementia?

There may be other benefits to taking galantamine for your husband, even if he has severe dementia.


Sun Oct 30, 2011 12:05 am
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: question about galantimine and like drugs
robin, i guess that was what i was trying to figure out.. some days he seems ok.. but that test proved me wrong many times.. as he did terrible.. other days, is one big confusion... and he just sits.. hes all over the charts.. so i guess my answer would be, i dont know... my guess is we are at moderate .. what ever that is???

thanks for the help...

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Sun Oct 30, 2011 12:10 am
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: question about galantimine and like drugs
It sounds like what your husband is experiencing is the classic LBD symptom of "fluctuating cognition."


Sun Oct 30, 2011 12:57 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: question about galantimine and like drugs
I am so sorry about the day program. I hope that can eventually work out.

With any drug, if it is working, the LO will seem better in some aspect. Fewer hallucinations, fewer falls, better sleep -- something will be better, depending on the drug. If cognition is better, test results will probably be better, unless the test happens to occur on a "bad day." None of the drugs are a cure, but if they work (and none of them work for everyone) they can greatly improve the quality of life. I don't know if any of them extend the life expectancy.

As for whether drugs make test results "better" than the LO "really" is, I'd say the test refelcts what the LO really can do at that moment in time in the current circumstances. (Lack of sleep, being on a drug, having a bad cold, many circumstances might impact the test results.) If a drug improves cognition, then I would expect test results to be better when taking the drug than without the drug. And that is the "reality" at that point in time under the current circumstances.
Coy's symptoms have been relatively mild (after a horrendous year to start with) and I'd say he is in early stage. He is in his ninth year, still able to do most ADLs, read, bowl, carry on coherent conversations, remember lots of things as well as I can, make jokes, etc. We can't know what he would be like without the drugs, so it is hard to say how much they are responsible for this level of quality of life. He is starting to decline in a few areas. Sigh. No improvement is forever.

On the other hand, Coy could not live alone. Maybe his stage could be considered "moderate." All I know is that it is definitely not end stage, yet.

There are no well-defined stages in LBD. As far as I can see, there is no particular advantage to assigning labels and to trying to figure out what stage a LO is in. He is where he is, and you probably know that better than a test can reveal.

Good luck, both with the medicine and with working out the day program problem.

_________________
Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Mon Oct 31, 2011 6:40 pm
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Joined: Fri Nov 05, 2010 11:30 pm
Posts: 317
Location: southern cali
Post Re: question about galantimine and like drugs
thanks jeanne.. its just so much of a roller coaster ride.. guess i was trying to make sense out of something that doesn't make sense...

you never know what tomorrow is going to bring... i'm a planner and that sure has been thrown out the window... i think i got my hopes up to have a day or two a week and now feeling a bit discouraged...

like coy, most days.. hubby does ok...but knowing anything is possible, cause its happened... i'm afraid to leave and go anywhere...

he can carry on conversations.. but doesnt remember them 2 minutes later. reading and tv seems are too rough, most days... he will sit and read the same front page for hours and pick it up again the next day and do it again... its so painful to watch.. if we are doing chores, i have to be there .. or instead of planting one rose, 8 are pulled out... we tried painting walls only last week and it was fine while i was there... the phone rang and dummy me, forgot and answered.. 3 minutes later the doors baseboard and anything he could find was painted.. i need to reprogram my self i guess... the good minutes are so easy to enjoy....

thanks again,, have a good day

_________________
sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..


Mon Oct 31, 2011 10:39 pm
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