Update here; it's six months later but I did start feeling guilty about doing nothing about my dh's decline and asked the neuro for Namenda. I'm going to start it today. Don't know if it will help but I wouldn't feel OK about not trying everything.
Jeanette, it will be interesting to see if it makes a difference. By the time Namenda became available here in the States it was too late for it to help my husband so we didn't try it.
John was SUPPOSSED to have been on Aricept several years ago (two years before I was let in on his diagnosis, apparently). When he started it, I couldn't notice any difference. Maybe it was too late for it by then. Then Namenda was prescribed as well. No change did I ever see. As I understand it, these drugs do NOT stave off the progression of the disease. They only slow it in the early stages. John has been on them both now since he's been away from my care...the nursing home agreed with me in our last meeting that he's been using them beyond the capacity for the drugs to work and we all agreed that he should be taken off them. For some reason, they still haven't stopped them. I can't figure. (I don't want any further invasive procedures done either, like bone marrow biopsies, transfusions, etc....but they keep doing that and call Adult Protective Services if I object. I just stay away)
Following are the first four paragraphs from a 2004 article in the NY Times on a study published in Lancet about Aricept.
Go here for the rest of the article: http://tinyurl.com/ygq8yl4
The most widely prescribed drug for Alzheimer's disease, Aricept, does not delay the onset of disability or the need for a nursing home, British researchers are reporting today.
The researchers say that the drug has ''disappointingly little overall benefit'' and is not cost-effective, and that better treatments are needed.
Experts in the United States are already divided over the usefulness of Aricept and related drugs, and the study is unlikely to end the debate.
Most studies have shown that the drugs can produce small improvements in scores on mental tests, but it is not clear whether the gains translate into anything helpful in real life. Even the drugs' staunchest advocates say that they offer modest benefits at best, affording perhaps a short delay in a patient's decline. But when small changes in functioning occur, it may be hard to tell whether they are owing to the drug or to the ups and downs of the disease itself.
Lori, they need to read this site. Over and over again spouses have been shown to be able to walk and feed themselves longer with Razadyne/Aricept and Namenda. At the final stage, they are no longer effective, but in the earlier stages, they allow us to keep them home. Those drugs DO serve a purpose for a time.
My DH has been on Aricept since September 2008 and Namenda about 6 months later. He takes one of each in the evening and another Namenda in the morning along with Sertraline, Lisinopril, 2 Low dose Aspirin, Centrum Silver,2 Caltrate each day and a Fosamax once a week. We saw our PCP last week and he said then to give 2 Low Dose Aspirin instead of one and to start taking Vitamin B12. The only one I know for sure that is a help is the Sertraline for the paranoia. So until either our PCP or the neuro say different I don't plan on taking him off any of them.
My DH has been on Aricept since June 08 and Namenda about 3 months later. I did think he improved some when the Namenda was added. The one he takes which he can't do without is Clonazepam (generic Klonopin). He has sneaked and took extra of those so had to miss some later (controlled substance and cannot be refilled before it's time) and missing even one day makes a big difference.
My husband was put on anti-parkinsons drugs at the beginning of his diagnosis in 2007. They were removed and Namenda started with in six months. He has FTD and PSP and has had a very swift and steady decline. He went from normal (with the exception of not being able to speak) to needing total care in less than 2 years. The nursing home discontinued the Namenda and started Exelon when he entered the facility in June of 09. I have seen little evidence that any of them have done much for him.
My husband started Aricept when he was first diagnosed with MCI in February 2008 and Namenda about six months later. Like Buzzelena, I thought there was some improvement when he started Namenda. He has continued to decline, but it has been slow. He was diagnosed with Alzheimer's last week. I don't think we can really know whether the drugs work for a specific patient. We just have to rely on the statistics from large-scale studies to give us some indications whether they are likely to be helping.
Last Oct my hubby was started on Exelon. Then Namenda was added and he took only 3 of the starter kit's min dose tablets. He got so dizzy the neuro pulled him off of that one. As to the Exelon..it is supposed to slow the progression but I am not so sure it has..I see changes and my hubby's brother who was here 3 weeks ago and is here again said he sees changes in that short a time frame. It discourages me. It also tells me that I need to talk to our estate lawyer NOW. Our home and cars and everything is in a Trust. I hope that is a safe way to be. I am going to ask about this.
I spoke with his neuro today. I told her that he has been tired and has no stamina since it went to 10mg twice a day. She said it was a side effect but not common. She agreed to my wanting to take him off it if he doesn't get better within the next couple weeks. But, I think I might do as Vickie suggested trying just one 10 mg a day. The literature that came with the pills say they only absorb 48 or 52% of the medicine (forget which it is) and the rest goes through their digestive system unabsorbed. I need him alert and able to do things at least 10 hours a day as long as possible.
4 years before Dx, DH complained to his Psychiatrist that his memory was giving him troubler--ratherup[set. Dr. was treating Mental Illness. Gave DH 3months of Aricept to try, with the statement that if it worked, he had Alz; if it didn't he didn't. All it did was increase agitation and confusion some. I've nevr seen anything about usinbgAricept for diagnosis. DH has VaD.
My hb has an Exelon patch and takes 10mg of Namenda in a.m. and p.m. along w/meds for bp, and vitamins D, E, B12, low dose aspirin. He continues the downhill slope--more rapidly of late. I mentioned it to neurologist: " Well, it would be more rapid if he weren't taking them." I'm not so sure; and why prolong something that's not enjoyable for either of us. Today he wrote a note to himself and now denies he wrote it. ??? I've got my copy of Coping with Alzheimer's handy. Hb has vas dementia.
I agree Zibby - why. If my hb gets to a point where he just sits and watches TV all day and can no longer do anything, why keep on the drugs that may be prolonging this horrid disease. I didn't give him the Namenda this morning, only tonight and he seemed better today. Probably shouldn't be playing around with the dosage, but I need to know if that is what is making him so tired.
My husband has been on Aricept for about 9 years. We have no idea if it is doing any good. My problem is the latest cost increase. It just went up to $600 for a three month supply. Two years ago it was $440--that's a big increase and it's all donut-hole expense. It's a lot of money to pay for something if it isn't doing any good. How do you know?
I think the bottom line on Aricept, Namenda, the Excelon patch, etc. is simply that we are all seeking SOMETHING to possibly slow the decline in our spouses, and we are all hopeful that this med or that med will do just that. However, all the research seems to show that, at best, these drugs only work for about 50% of those who take them, and even for those 50% the declines are very shortlived ... maybe 6 months to a year, at best. However, we all also face a common conundrum: If we see absolutely NO improvement after a period of time on Aricept or some other med, there is no way to possibly know if, in fact, our spouses would have been worse off had they not been taking it! If Clare continues sliding downhill as she currently is doing, however, I can see us dropping Aricept in the near future.
Same with clinical trial meds. As I've written elsewhere on this site, Clare is in the Dimebon CONCERT clinical Phase III trial. The recent poor results for the Dimebon CONNECTIONS Phase III clinical trial do not bode well for the CONCERT trial ... yet Mount Sinai researchers are still hopeful that results after 12 months in the CONCERT trial may show some positive effects. Of course, even if there ARE positive effects, who can say if they will improve my wife's status one iota. A higher score on a memory test or some other measure that 'justifies' a med's success doesn't necessarily translate into any improvements in the real world. But we continue on ... with hope ... because what other choice do we have? After the trial ends, if we see no positive efffects, it will be time to end both Aricept and Dimebon. Will we then try Namenda or something else? Probably ... hope springs eternal. But let's face it. NOTHING in our lifetimes is really gonna make any significant difference in the course of this horrible disease. That's a sad and perhaps pessimistic outlook ... but I think it's a realistic one. AD is AD ... It is what it is ... and no med now in the research pipeline is gonna change that reality anytime soon.
I agree, acvann. Same with Juvenile diabetes. Not much hope there either. We just keep trying whatever is out there and hope something sticks. Not very hopeful, however.
DH was dx 2 yrs ago with FTD. Had a suspected "drug reaction" and all drugs discontinued including Aricept and Namenda. I was scared to death he would go into a severe downward spiral when meds were stopped but it didn't happen. Psych says he doesn't believe in Aricept, Namenda or Exelon. Who knows?
My wife used to see a psychiatrist as well as her PCP and neurologist. About two years ago when she became unable to remember much of what she and her psych had discussed by the time she had returned to the waiting room where I was sitting, she began bringing me in to her sessions. These appointments very rapidly morphed into the psych talking to me about her and asking me about changes in her behavior and condition. After about a year of that I stopped taking her to the psych all together. He had little experience with EOAD patients and wasn't dealing directly with her anymore anyway. We now have the Neurologist manage all of her meds since the only meds she takes are for AD. He is of the opinion that there is some benefit to be gained by taking excelon (that is what Sharon is on at the moment) since we do actually notice some improvement in her level of alertness and her speech (at least we did). It is noted in the reports from the clinical trials that the benefits from this class of meds is only observed in about 50% of those taking them and that those benefits generally last no more than about six months. Beyond that it is hard to tell if there is any reason to continue them. I guess we all live in hope. I suspect that Sharon no longer benefits from the Excelon but I am reluctant to stop it.
LFL, I've read that a lot of FTD patients cannot take the so-called alzheimer drugs because they can cause a bad reaction including more aggression. My husband was diagnosed with FTD almost 2 years ago and he is on aricept and namenda. He has had no side effects from them and they seemed to have helped him at the beginning. I'm not sure if they are doing anything now, but I'm afraid to discontinue them for fear of a worse decline. I do know that namenda is being used in studies for FTD to see if it does help. My husband's psych is the one who originally placed my husband on namenda but now he only handles his anti-depressant and seroquel (for his obsessive behaviors). The neuro handles his aricept and namenda. He only sees these doctors every 6 months now for medication checks.
Both of these doctors do speak directly to him. Whether he understands them or not is another story. After they talk to him they always ask if its okay to talk to me. I like that he is acknowledged normally even if he doesn't understand everything that is going on. My husband's psychiatrist has know him for over 10 years, so he knew him before the FTD.
One of the excellent advantages we have gained by hooking up with Mount Sinai is that Clare is enrolled in their longitudinal research study. As an ADRC ... Alzheimer's Disease Research Center ... Mount Sinai receives funds to allow them to monitor progress of AD patients on a yearly basis at no cost to the patients. Our only responsibility was to allow them to give Clare a "number" to allow them to track data on her ... data that is shared with all the other ADRC centers around the country. That data bank will, hopefully, provide researchers with some valuable insights over time. Anyway, the quid pro quo for us is that Clare is now seen by the same team of docs every year to track her progress ... or lack thereof ... eliminating the need for us to see other doctors on our own. That study, plus the clinical trial, allows my wife to be seen regularly and THAT is wonderful. One member of the team is certified in both geriatric psychiatry and neurology, and it is a comfort for both of us to to be able to see her regularly, ask questions, etc. We also now have someone we can email with questions ... another plus. As I said, after this trial ends in another 9 months, we'll discuss endign all AD meds unless clear progress seems to have been made. As my wife is currently still in free fall after sliding off another cliff around 6 weeks ago ... and is now remembering less and sleeping more ... for her, at least, it appears that neither the Aricept nor the Dimebon (if even receiving it; she could be getting a placebo) is doing anything to help. We'd actually stop the Aricept now if we could, but we can't because she must be on it to remain in the Dimebon CONCERT study!
FDA approves larger dose of Pfizer's Aricept "On Saturday July 24, 2010, 10:39 pm EDT NEW YORK (AP) -- Drugmakers Eisai Inc. and Pfizer Inc. said on Saturday that government regulators have given them permission to make a larger dose of its Alzheimer's disease drug Aricept for patients who have already been taking the smaller dose.
Aricept is the version of the drug donepezil, and is co-marketed by Eisai, of Japan, and Pfizer. Its 2009 revenue for Pfizer was $432 million, with another $3.3 billion for Eisai, making it the largest seller out of four drugs that can temporarily reduce Alzheimer's symptoms.
The companies said the higher dose improved scores on a patient test that measures cognition. There was no difference on a different test that measures global function.
Approval by the Food and Drug Administration followed a study of 1,467 patients with moderate to severe Alzheimer's. It said the larger dose is recommended for patients who are already taking smaller doses daily for at least three months." http://finance.yahoo.com/news/FDA-approves-larger-dose-of-apf-2636284585.html?x=0&sec=topStories&pos=6&asset=&ccode=
I had the same reaction when I read it, Charlotte. I wondered why is was necessary to come out with a different pill in a 23 mg dose. Aricept already comes in 5 mg and 10 mg pills. What is magic about 23 mg? Why not use 25 mg?
Great minds must think alike.....yep...I think we should double the amount of golf balls in the gulf to really plug the leak in the gulf oil spill....It sure sounds like the intent is financial..
moorsb...I think you're probably right. Just like when Prilosec got to the end of it's exclusive time and went generic, they tweaked one tiny thing that didn't make any difference at all in how it worked, and named it Nexium.
Since Clare is in the CONCERT clinical trial with Aricept and Dimebon at Mount Sinai in NYC, I emailed them over the weekend re whether the higher dosage would be allowed under Phase III guidelines ... and, if so, would they recommend a switch to that higher 23 mg. dosage. The response today was that MS docs have not seen any substantial data to indicate more effectiveness at the higher dosage; they question whether this is just a patent ploy. Nothing important ever gets past this group, does it?!