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    • CommentAuthorBebe
    • CommentTimeMar 22nd 2008
     
    I have tried to look this up on the internet but can't find an answer. I was wondering because, as some of you know from my other posts, my husband has not only AD but also three types of cancer--two of which are not curable. In January his oncologist said my husband has less than six months to live and put us in contact with Hospice. I had to go out of state a couple of weeks ago because of the death of my cousin and placed my husband in Hospice House for two days. When I picked him up, I could tell from his expression that he was out of it. Turns out the nurses had taken it upon themselves to start him on Aricept and Namenda. We had tried those meds several years ago and they had make him lose all contact with reality so we took him off of them. I was under the impression that Aricept and Namenda had to be adjusted every several weeks until the optimum (workable) dosage is reached. I was wondering how long the period usually is before the optimum dosage is reached. Why would they take it upon themselves to start his on meds like that in Hospice when he supposedly has three months to live.
  1.  
    That makes no sense. I can't imagine why they would start giving him those meds when he's in hospice care.
    My experience with them is that if there is going to be any improvement, you'd notice it enough to feel confidant about it in about a month.
    But I wouldn't bother with aricept and/or namenda at the point of hospice care.
    • CommentAuthorAdmin
    • CommentTimeMar 22nd 2008
     
    Bebe,

    Once a patient is at a Hospice level, they usually take them off of the Aricept and Namenda. But to answer your original question about how long it takes them to work - Aricept is supposed to be phased in - 5 mg. for a certain number of weeks; then on to the 10 mg. Namenda is usually added a few months later. In my husband's case, I would estimate that the Aricept kicked in after a week or two. It stabilized him.

    joang
    •  
      CommentAuthorStarling*
    • CommentTimeMar 22nd 2008
     
    They added Namenda very slowly for my husband. It took 2 months to get up to the full dosage. About a week after the full dosage I noticed changes for the better. His first medication was Razidine (spelling may be wrong on that one). I never saw any change with that medication, but it may be the combo that is working.

    I'd talk to Hospice (and his doctor) about what medications make sense and which ones do not. They have a lot of experience.
    • CommentAuthorSunshyne
    • CommentTimeMar 23rd 2008
     
    My DH was put on namenda only. One week at 5mg 1x per day, one week at 5mg 2x per day, one week at 10m once and 5mg once, and then he was at full dosage of 10mg 2x per day. So that's three weeks. We were using a kit from the pharmaceutical company itself, so I assume that's pretty standard. He responded very quickly.

    I wouldn't have thought nurses could put anyone on, or take anyone off, a drug, by themselves. There must have been a doctor in there somewhere, or at least a Physician's Assistant.

    I'm also a little surprised they used Aricept at this point ... that's only approved for mild AD. Namenda is the only drug approved for moderate or severe AD.

    In any event, some people do respond quickly and positively to these meds, and so hospice may have considered it to be palliative care -- that is, a way to help make your husband more comfortable, mentally. But since some patients have bad side effects from one or the other, they may not be appropriate for all patients.

    So sorry to hear about all your problems. What a terribly difficult time for you. My first husband died of pancreatic adenocarcinoma with metastases in the liver. You will be in my thoughts...
    •  
      CommentAuthorStarling*
    • CommentTimeMar 23rd 2008
     
    We actually had two of those kits that Sunshyne was talking about. My husband's doctor wanted to add the drug especially slowly. So we did TWO weeks on each of the dosages she mentioned, and the whole thing took twice as long to build up - a total of 6 weeks at the lower dosages and then 2 weeks on full dosage before we were done with the kit. He had no side effects so I'm not totally sure why so slow, but he might have had trouble with other patients. He is on a lot of drugs for other things that are wrong with him.
  2.  
    My husband was given the kits for Razadyne and a month later, when Razadyne didn't slow AD down one iota, the doctor added the Namenda kit. Like Starling said, 6 weeks at lower dosages and then when we tried the full dosage, he started getting an upset stomach, so we kept him at the lower dosage for another 3 weeks before going full dosage, this time without any side effects. However, he has had no slow down of any kind that we can see. He has been on both Razadyne and Namenda at full dosage for a year. Apparently he is one of the 30% who don't get any benefit from the medication.

    His primary care physician had given my husband a simple test "what day is it, when is your birthday, who is president, etc." test two years ago when I told him something was wrong, and my husband was always great at tests, and has a lot of pride. The doctor said he was okay and it was just normal aging. A year later when it was time for my husband's physical, I typed a 5 page, single spaced letter, detailing my husband's actions, personality changes, anger issues, saying no and meaning yes, buying doughnuts and hiding them as a child would, and other things that are not normal adult behavior. After the doctor read it, he agreed to get a MRI, and an appointment with a neurologist, however the doctor thought he had had a stroke and thought that the MRI would show it.

    We had the MRI, and the appointment with the neurologist (one of the questions she asked him at the end of his test with her - which he was passing to that point - was name all the animals in the world he could think of and to take his time. He could only name THREE! - at which point I felt vindicated, I'm sorry to say). She scheduled him for a PET scan, which confirmed the AD - and the MRI confirmed he also had had a small stroke. That was February 2007 and he's gone downhill so rapidly that I'm almost to the point that I'm going to have to have someone stay with him while I'm at work.

    I don't know why the drugs aren't helping him at all, but now I'm afraid to stop them for fear he'll sink even faster. Does that make sense?
    • CommentAuthormarsh
    • CommentTimeMar 24th 2008
     
    Several of you have mentioned getting PET scans to confirm the diagnosis of AD. Four years ago when I wanted to get one for my wife, I was told that Medicare would not pay for it (it was still experimental) and that it would cost me $6000. Since we were fairly sure of the diagnosis, her doctor and I agreed not to do the test. Now I wonder if there is any reason to reconsider. Does Medicare now cover it?
    • CommentAuthorSunshyne
    • CommentTimeMar 24th 2008
     
    Marsh -- I just checked my DH's files. He had a PET in August 2005. It cost $3,443 and Medicare paid $3,057.

    It does not "prove" that the patient has AD, it's just additional supportive evidence. The diagnosis is still "dementia, probable AD."
  3.  
    I don't know Marsh. We had/have a sucky HMO, and were seeking help from the doc who was recommended to us rather than asking the HMO who we were ALLOWED to go to...
    thus we paid out of pocket for that neurologist and the PET. It was $3000. Luckily my parents helped.
    I don't know that there is a valid reason if the Dx seems certain.
    Personally, I find it reassuring (? weird feeling here, I guess...) to have the graphic, full-color picture of just how his brain is hypometabolizing...so I have no doubt, and know I shouldn't be desperately scrambling for the "real" diagnosis.
    • CommentAuthorSunshyne
    • CommentTimeMar 24th 2008
     
    ...thinking about this some more ... I believe that the neurologist may NOT have said that the reason for the PET was to check for AD. I think she said something vague, about symptoms.

    Sorry I'm being so vague. Too long ago.
    •  
      CommentAuthorshoegirl*
    • CommentTimeOct 1st 2008
     
    B. has just added Aricept to his Namenda, has been taking it for about a week. I am noticing daily that he is becomingly increasingly disoriented.

    Has anyone else had this experience with Aricept? It just seems so sudden and everday is a little worse. I know that comes with the disease but I would hate to think I am making it even worse because of the drug?

    Signed,
    Confused
    • CommentAuthorSharan*
    • CommentTimeOct 1st 2008
     
    My husband was on Aricept and they now have him on the Exelor patch. I did not notice any improvement or stabilization on Aricept or Exelor, but I did notice that my husband "seemed" to get worse when we took him off the patch for a day for some testing. Of course, that could simply have been a bad day AND he was worse in the morning, which is typical for him. He gets better around 3 or 4 in the afternoon until around 8.
  4.  
    I have no experience on doing them seperatly. My DH was started on both at the same time. I really did not notice any immediate improvement or decline at the time, but did recently when he ran out of them for 3 or 4 days. He was like a zombie so we are not
    going to let that happen again.
    • CommentAuthorLizbeth
    • CommentTimeOct 1st 2008
     
    Shoegirl,
    Aricept did not help H but Razadyne did. So I think it depends on the person. H is on Razadyne & Namenda.
    • CommentAuthorkathi37*
    • CommentTimeOct 1st 2008
     
    Totally depends on the individual...G went bonkers on Aricept..the aggression poured out of him..he could feel the rage rising. Couldn't get him off of it fast enough. Exelon patches destroyed the skin..stopped that..Namenda in the increased dosage made him a Zombie. Off that now also. What next ????
    •  
      CommentAuthorshoegirl*
    • CommentTimeOct 1st 2008
     
    I took him off of the Aricept today. When he started saying his stomach was bothering him, I thought okay...lets see what some days are like without the Aricept.

    Such a big responsibility this is...hope I am making the right choice.

    Kathi37 maybe we should check out Razadyne.
    • CommentAuthorkathi37*
    • CommentTimeOct 1st 2008 edited
     
    I'm ready for anything! The monster has been lurking around here the last two days..ready to spring. I can feel it, and have been doing the eggshell thing, so we'll see what happens with the Dr. appt. tomorrow. GD..isn't this a pain in the ass! I guess I would feel differently, but I know if things were switched, he couldn't deal with it. He has never been able to handle any illness on my part. I'd be in a NH by now..sorry venting.
    • CommentAuthorMawzy*
    • CommentTimeOct 1st 2008
     
    My DH was started on the Exelon patch last November 12. On May 6, 2008, he was started on the Namenda routine spelled out above. He is worse but the neuro said it wouldn't stop it. Only slow it down. I don't know what to do now. He sees his PCP this month and I'm going to ask if the Exelon pills would be just as good as the patch. The patch is frightfully expensive and he's almost in the donut hold.
    •  
      CommentAuthorNikki
    • CommentTimeOct 2nd 2008
     
    Shoegirl, Lynn too had horrible stomach pains on Aricept. I also
    felt it made him worse. But, his doctor wanted me to keep him
    on it to see if the side effects let up. They didn't. Some meds like
    chemo, make you sick.. but you know it is for a limited time, and
    the hope is for a cure. As we know , there is at present no cure for AD..
    He is now in late stage 6... all meds have been stopped for well over a year now.

    If he was in earlier stages, I may have kept him on them. But, they
    seriously made NO difference in him. When I took him off the Aricept
    and Namenda, unlike so many have said..he did not decline.. he improved.
    Not drastically, but he slept less and all stomach pains and nausea were gone.

    I think every thing has to weighed by quality of life for each individual.
    For Lynn, he is 76. Just how much can these meds "slow down the process"
    And are the side effects worth it. In our case, I decided no.
    Now that isn't to say if there was a new medicine, .. I wouldn't make
    the poor bugger try it. If it offered hope, I would in a heartbeat.
    •  
      CommentAuthorStarling*
    • CommentTimeOct 2nd 2008
     
    My husband is on Razadyne and Nemenda. The doctor wanted to increase the Razadyne, but at this point I'm not at all sure I want to do that. He is not having any kind of stomach pain and he takes such a huge cocktail of meds for a range of problems that I'm not sure increasing a medication that we know causes stomach problems is a good idea.

    I'm open to advice.
    •  
      CommentAuthorJudithKB*
    • CommentTimeOct 2nd 2008
     
    My DH is on Razadyne and has been since last winter. I can't say that it did very much and he seemed to be going down hill fast. The new Neuro put him on Namenda and within a month I could see a big improvement. Not much improvement in his memory loss (I can handle that), but a major improvement in his mood swings and his strange behavior such as thinking I am stealing his money, etc. Even the look out of his eyes is much better. He was going down hill so fast I thought I would be putting him in a home within the year and now I don't even think about it. In fact, I was on this board most every day just too keep from getting too depressed and I haven't been on lately because I am enjoying his change in mood so much I don't feel it necessary. What a blessing this place is for all of us.
    •  
      CommentAuthorNikki
    • CommentTimeOct 2nd 2008
     
    Judith I am so happy for you!! I know the feeling of getting part of them back.
    We are still losing them, but to regain even just a little piece of their personality
    ...such a gift!
    • CommentAuthorSunshyne
    • CommentTimeOct 2nd 2008
     
    kathi37, if your husband has FTD, he most emphatically should NOT be taking aricept, exelon, razadyne, or anything similar. These meds can be very harmful to FTD patients.
    • CommentAuthorSunshyne
    • CommentTimeOct 2nd 2008
     
    Shoegirl,

    Aricept can sometimes cause adverse behavioral side effects in Alzheimer's patients. The more common ones -- those occurring in at least 1/100 patients during the clinical trials -- included delusions, irritability, aggression, restlessness, nervousness, abnormal crying, aphasia (problems speaking) and increased libido (sexual drive).
    •  
      CommentAuthorshoegirl*
    • CommentTimeOct 2nd 2008
     
    Sunshyne,
    I definitely was seeing the nervousness, restlessness and some aphasia. Did not give him Aricept last nite or tonite. He seems better today, less nervous for sure. I guess it's too early to know. Will keep you posted.