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    • CommentAuthorohme
    • CommentTimeAug 17th 2013
     
    DH diagnosed 3 1/2 years ago. Wondering how long to continue meds for ALZ.
    • CommentAuthorohme
    • CommentTimeAug 17th 2013
     
    Learning how to use site. Been reading for 3 1/2 years. Feel like I know a lot of you.
  1.  
    Glad you have posted. Others will be on to help you with whatever you need. Since you've been reading without posting you know what a great place this is. Sorry you need to be here but welcome anyway.
  2.  
    ohme: funny that you asked that question right now. I had just come back to this site after spending a half hour on a site of our member acvann. His site is : www.allansvann.blogspot.com/

    About the third item down is an article he wrote about that subject. He covers the research trials of the various AZ drugs and the fact that none of them showed any effectiveness after a short time. Read it! It made me want to discontinue them
    • CommentAuthorCharlotte
    • CommentTimeAug 17th 2013
     
    I asked about discontinuing last year at his neuro visit and she said no. Next month is his yearly visit and I will ask again. My feelings are the doctor doesn't want to stop not knowing if he is the few it helps.
  3.  
    My DH has been taking Aricept and Namenda for five and a half years and I've also been tempted to take him off but some have posted there was a steep decline when discontinued. DH is doing well with no side effects and just the gradual decline. I'm really hesitant about rocking the boat - like if it's not broken, don't fix it. Welcome ohme. I don't know how I would have made it for the last 5 1/2 years if it wasn't for Joan's place. Thank you again, Joan, and I'm so sorry you're going through such a hard time right now with placement.
  4.  
    Sorry you have to be in the trenches with us,as for the drugs I chose not to give them to my DH. But we all have to do what WE think is best for each situation.
  5.  
    Claude was on Exelon and Namenda for close to five years. When he went on Hospice near the end, the hospice doctor took him off both. It was like over night that he went into a dramatic decline. I truly feel keeping him on them for that length of time slowed the progression of the disease.
  6.  
    My wife was on Namenda and Exelon Patch for 3-4 years. I was not convinced that they were doing any good since she was deteriorating. I had her doctor stop them and there was NO change (except that she is no longer deteriorating as fast as she was). Unfortunately, every patient is different - as indicated by redbud73086's comments above)
    • CommentAuthorMim
    • CommentTimeAug 17th 2013
     
    ohme -
    That's exactly when D. was diagnosed, started on the Exelon patch at that time. He is deteriorating slowly. I asked the doctor about this very thing, & he said to keep him on it as long as things were still fairly steady. I suppose when he shows more of a marked decline,then it might be time.
    Sorry to have to welcome you, but this is a great place to come when you're in this tragic situation.
    • CommentAuthordivvi*
    • CommentTimeAug 18th 2013 edited
     
    welcome ohme. and your name is quite appropriate I think for this site.:)
    many topics on if and when to stop the drugs. I will try to find a couple for you to read.
    some profit from taking them off and some decline. each is different. I don't know but the 5yr mid range marker was a good one for me. I also believed in not rocking the boat so to speak til we had adverse reactions later one from them.
    divvi
    • CommentAuthorWolf
    • CommentTimeAug 18th 2013
     
    Welcome ohme. There was someone else new I thought just recently but I can't find that post now. Welcome to them too.
    • CommentAuthorlulliebird
    • CommentTimeAug 18th 2013 edited
     
    Ohme,

    Welcome!

    There are several differing views, in the medical community, on the success of Aricept and Namenda. Some says its, "false hope in a bottle" others not. Personally, it's not working for my husband (Namenda or the patch). He's declining rapidly. The cost of these medications are expensive (as in my case,) and I would rather see the money spent on something he could benefit...ie, adult daycare or activities he can enjoy)

    Ohme, because each individual varies I would talk it over with his neurologist and weigh the options before making a final decision. When you make this choice you will know that you have make best decision on his behalf.

    Wishing you well!
  7.  
    DW Was Dx'ed in 06 now in Stage 5/6 http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp

    the "indications" for Namenda now include the treatment of moderate to severe dementia of the Alzheimer's type.
    Aricept was previously approved for the treatment of mild to moderate dementia of the Alzheimer's type. It now the product is approved for the treatment of all degrees of severity of the disease.

    Just last week I asked DW's Md if there was any reason to continue with Aricept and Namenda?
    " As long as there is any cognitive ability, I want her to stay on both. Once she's lost whatever little she has, restarting the meds will not restore the losses she'd incur."
    was his reply. I don't perceive the meds are if any benefit, but the counterpoint is, I don't think the risk is worth the savings of a few $'s
    • CommentAuthoracvann
    • CommentTimeAug 19th 2013
     
    Ohme, continuing on meds is a decision that, very sadly, doctors cannot help you with because most doctors, again very sadly, are totally unfamiliar with the research done on these meds. Study after study has demonstrated that all currently approved Alzheimer's meds only help to slow the rate of decline ... not the decline itself ... for about 50% of those who take the meds, and even for those people the meds are no longer effective anywhere from several months to a year or two ... at most. Yet, many doctors never remove their patients from those meds and money that can be better spent in other ways gets spent on meds that are no longer effective. As MaryinPA noted, if you go to my new site, www.allansvann.blogspot.com you can read an article recently published citing all the research from the drug manufacturers themselves. Not even one Alzheimer's medication has ever been proven effective for even one year. Not one. Some caregivers do report declines after their spouses stopped taking Alzheimer's meds. That is true. however, on or off the meds people with Alzheimer's are going to suffer declines so it is most likely stopping the meds had nothing to do with those declines ... meaning the declines would have occurred anyway, even if still on the meds. One other thing to remember. NO med will stop the declines; the best one can hope for is to slow the rate of decline for a few months up to a year or two at best. All people with Alzheimer's will suffer those same declines eventually, but for some, and only some, the meds may help to slow the decline for a period of several months up to a year or two.
    • CommentAuthorlulliebird
    • CommentTimeAug 19th 2013
     
    Acvann,

    Well said!
  8.  
    Previous studies showed that donepezil combined with memantine was better than either alone. Because of this, many of the patients with whom we work are prescribed both medications. This new study calls this practice into question.
    The study also showed that patients benefitted from donepezil in later stages of the disease. While this finding isn’t new, in clinical practice many physicians question the impact of this medication in the late stages. It is common for donepezil to be stopped at this point as it is perceived to be of no use. This new study suggests that perhaps donepezil may continue to help even in these later stages and should be continued for a longer period than is now the norm.

    The bottom line
    We desperately need better treatments for Alzheimer’s; treatments with much larger benefits for those who take them; treatments that slow or stop the progression of the disease. While the FDA approved medications have “statistically significant” effects in some persons with dementia, in many the benefits are subtle. Patients and families are eager for better treatments now.
    For more information on the latest news and developments in Alzheimer’s research, visit www.alz.org/research.
  9.  
    3/08/12 The New England Journal of Medicine
    Study results published Thursday in the NEJM suggested that the continued use of Eisai and Pfizer's Aricept (donepezil) in patients who have progressed to moderate-to-severe Alzheimer's disease is associated with significantly better cognitive and function abilities than placebo. Lead researcher Robert Howard said the trial is the first to show the benefit of continued drug treatment for these patients.

    Although Aricept is commonly prescribed for patients in the early stages of Alzheimer's disease, doctors in some countries are advised to stop prescribing the therapy to patients once their disease has progressed to become more severe. "Clinicians are faced with a difficult decision as to whether to continue or not with dementia drugs and, until now, there has been little evidence to guide that decision," Howard remarked. Now "we have robust and compelling evidence that treatment with these drugs can continue to help patients at the later, more severe stages," he added.

    The study randomised 295 patients with moderate or severe Alzheimer's disease who had been treated with Aricept for at least 3 months to continue treatment with the drug, switch to Forest Laboratories and Merz's Namenda (memantine), which is also sold by Lundbeck as Ebixa, switch to treatment with Aricept and Namenda, or receive placebo alone. Patients in the study were treated for 52 weeks.
    • CommentAuthorCharlotte
    • CommentTimeAug 19th 2013
     
    We met the guy next to us (we live in an RV park) last night. Art tells everyone he had memory problems and does word search to keep his mind working. This ignorant guy told him to keep doing them cause they are coming out with new drugs and cures all every day. I was talking to someone else or else I would have set him straight.
    •  
      CommentAuthorNikki
    • CommentTimeAug 19th 2013
     
    Welcome ohme ♥ I am glad you decided to join us and I look forward to hearing more of your story.
  10.  
    My dh was just put on Namenda in June. He was first dx'd with vascular d. 2 years ago, and now alz 2 months ago. I can see he is still slipping. I'm wondering, once our lo's reach a certain point, why do we want to slow down the progress of the disease with medication, when they are suffering so.
    Bonnie
    • CommentAuthorxox
    • CommentTimeAug 20th 2013
     
    I'm not sure any of the meds slow the progress. I think, at best, they help with the symptoms. But the question about whether we should slow the progress of people at the middle or late stages is a good one.
    • CommentAuthorSabel
    • CommentTimeAug 20th 2013
     
    Dear brothers and sisters, I can't tell you how glad I am to have found you. I actually went to bed last night feeling not so lonely. Thank you to Joan and all of you.
    • CommentAuthorSabel
    • CommentTimeAug 20th 2013
     
    My DH just refused point blank to take Aricept after a couple of mths cos he couldn't see any difference and once decided there was no shifting him. Now it's way too late. He's in a NH and I'm devastated and lost with all this "free" time.
    • CommentAuthordivvi*
    • CommentTimeAug 20th 2013
     
    welcome Sabel. there are many many here who recently have placed their spouses/ there is much to gain from others experiences here. many walks of life and we all have a common goal to make it thru this disease to a new life, hopefully happy and healthy, and to make our spouses last years comfortable and pain free and as happy as possible.
    divvi
    • CommentAuthorSabel
    • CommentTimeAug 20th 2013
     
    Thank you Divvi. I read through most of the thread of caregiver life with spouse in res care and I have to say that nearly everyone's posts could have been mine ... all those overwhelming feelings are mine too and I have yet to dig myself out of this state I'm in and I'm hoping that reading more of your various journeys will help.
    • CommentAuthorbqd*
    • CommentTimeAug 20th 2013
     
    Paulc, I have been wondering the same thing. My DH was put on Aricept at the time of his dx almost a year ago. He was one of the few in whom Aricept suppressed his symptoms to the point where he actually seemed to have improved cognitive powers, and reverted from stage 5 or 6 back to stage 4. We have enjoyed almost a year together that we might otherwise not have had. But, the effects are now wearing off,he is entering stage 6 and we are back to where we were. I had difficulty coping then, and I do now. What is the point of prolonging the pain for either of us?
  11.  
    To me, slowing the progression or helping with the symptoms are pretty much one in the same. By slowing the progression, the symptom of incontinence for example, can be pushed back somewhat.

    Claude was on Exelon and Namenda for nearly five years. I personally was glad to have him with me a year or two longer than if he had not been on the meds. The pain was still there and still is after 4+ years, but for me it was worth it.
    • CommentAuthorxox
    • CommentTimeAug 20th 2013
     
    bqd, if I am correct, a big "if", your DH and you gained from the Aricept, if it did improve his cognition. I bet that if you didn't use it he would have been in stage 6 all of this time. It didn't give him more time, it made some of that time better. I doubt that these drugs prolong life, just make the damaged brain function better. Then again, after reading about drug testing I always wonder if we are seeing improvements that would have happened without the meds.
    • CommentAuthorbqd*
    • CommentTimeAug 20th 2013
     
    paulc, I totally agree with you, that if my DH had not taken Aricept and received the benefit from it, he would have been in stage 6 the entire time. If the Aricept had not had a positive effect on him, he would be in some sort of ALF or NH now - last September I was convinced that he would have to be placed by last Christmas. So, it did make the last year much better, and I am thankful for that. And like you I do not believe that the drugs extend life - they just mask the symptoms.
    My DD thinks that her father will need to be placed within 6 months and I am beginning to agree with her. And that is going to be hard on all of us.
    •  
      CommentAuthorNikki
    • CommentTimeAug 20th 2013 edited
     
    Welcome Sabel, I am sorry for your pain. I am glad you felt better knowing you are not alone. We are here for you ((Hugs))
    • CommentAuthorxox
    • CommentTimeAug 21st 2013
     
    bqd, listen to your daughter. My wives sisters were the first people to say that L needed to be placed in an ALF, long before it happened.
    • CommentAuthorohme
    • CommentTimeAug 21st 2013
     
    Hi All,
    Thanks for the discussion. Like bqd and others have said, the meds did make a noticeable difference in DH when
    he first started taking them 3 1/2 years ago, and progression has been slow. (Namenda and Exelon Patch). DH can
    still do all ADLS, stay alone 3-4 hours. Like a happy child.

    I'm okay to stay in this stage for a while so WILL CONTINUE MEDS. for present.......further progression in to 6 or 7 then probably not.