My husband has been on the Excelon Patch for about 2 1/2 years. I'm wondering - how am I supposed to know if it's still slowing down the progression? I see a difference in him, little by little, but I don't really know what he would be like if he weren't on it. I don't have anything to compare it with! He's definitely declining, but it's probably a slow process. That's really all he takes at the present, except meds for cholesterol & one for heart.
Mim, I have been wondering if the Aricept is doing any good. We have nothing to compare with. My DH is definately declining but would he be worse if we took him off it? Who knows.
I wondered because the doctor asked me a couple of visits ago if I thought the medicine was helping. I told him I had no idea - no comparisons. I realize even though it's the same disease, it's progression is different for each individual - I guess that would be because each individual is an individual, huh!!!
Claude had been on Exelon and Namenda for close to five years when he went on Hospice. The Hospice doctor immediately took him off them, and we noticed an immediate change in him. It seemed like he went downhill overnite.
Every one is different and in his case, I believe it slowed the progression of the disease. He was formally diagnosed seven years before he passed on, but the signs were there a good 10 years before.
I don't believe that Excelon or Aricept slow down dementia, they handle symptoms and can make someone function better. But I suspect it doesn't change the length of the disease. The only way to know if a medication is helping is to carefully take them off of it. From what others have told me, in the late stages they may do better without the medications. But it isn't always true.
Thanks, all, for the input. I think maybe this is pretty much a guessing game, even on the professional end of things. I have this bookmarked & will check back.
Mim, hard to say. When DH was discharged from the psych hospital, his attending psychiatrist discontinued Aricept and Namenda. I saw no difference in his cognition or behavior. In fact he was on a plateau for a good 3 years and then started to decline.
it may also depend on the variant of dementia that they have whether the drugs work better in latter stages. namenda worked pretty well for us til late mid stages for aggitation and some aggressiveness but as he progressed i took him off it and he was much calmer and easier to manage without it so hes had nothing of AD meds for 5yrs or so. so it definately is a hit/miss whether to give or not.
Divvi, were you successful the first time you trie to take your hubby off the Namenda? I had no trouble with the Aricept, but the Namenda is a different story. I have tried to take him off 3-4 times and he gets agitated. I have tried one pill every other day and one pill per day. Right now we are staying at one per day. And you are right. He seems clearer minded without. Should I maybe ask the doctor for something specifically for the agitation? I am just concerned it will impair him in some other way. Lloyd is stage 7 according to the Fisher scale.
Linda Mc, what did your doctor suggest for weening him off of Namenda. You might need smaller doses before eliminating it, that is how we got L off of Geodon.
i dont know linda mc, namenda we kept precisely FOR aggitation. it worked well for him for that but once the aggitation was downgraded i took him off. i did as paulc suggests and just lowered the doses over a couple weeks. like with many drugs taking them off cold turkey may bring ON aggitation. so i would recommend weaning off to see how he does with a lower dose GRADUALLY to allow body to adjust, rather than just cold turkey. i know many just cold turkey them but i think it would be a better way to adjust them slowly just so the body can tolerate the adjustments. if he doesnt do well on the lower dose say after a few days, then you may want to add more gradually til hes back to where he was. like we say, everyone is different and may or not work. you may need to keep him on it til hes a bit further in decline then the aggession tends to relax more. good luck.
Paulc, the doctor made no suggestions as to how to wean him of the medicine. He just said that Namenda was not beneficial to him anymore. I can see the difference when he is not taking it. He is still prescribed 2 10mg Namenda per day and I have him down to one a day. I had tried one every other day and it just was not working. Divvi, I have never pulled anything away cold turkey unless it was turning him into a zombie. Usually that was at the beginning of taking the medication. I finally realized the milligram amounts were way too high for him. Less worked better. 1500mg per day of Keppra really did him in. The doctor still insists on 1000mg per day, but I requested liquid so I still only give him enough to keep the seizures at bay. 6ml or 600mg per day does that. And at times I only give him 3ml at bedtime. He has only ever had a seizure in the morning between 6 and 11 AM. Don't know why, but that is how it is. So I medicate to stave off the seizures at those times at bedtime.
I read elsewhere that Namenda should be gradually reduced, smaller doses every day. Taking a wild guess here, for a week alternate between the current level and a lower dose every other day, then if there are no problems go only to the lower dose for a week. If that works use the same strategy again. We did that with Geodon. At time we had to give up reducing and then the reduction would work a month later. That that is for a different drug with different characteristics.
Also read of one person who went off Namenda cold turkey with no problems, but there are warnings of ill effects if you do a cold turkey withdrawal.
Paulc, I just checked the Namenda bottle to see if there was a precaution about splitting pills or chewing them. There were none so maybe I will give him 10 one day and a half the next. I do know they don't split well. I have never had him go cold turkey unless he was allergic or otherwise affected in a bad way. They took away the Aricept April 2011 when he was in intensive care. Of course his meds were all screwed up then. He had no standing order for sleeping pills, no order at all for his Coumadin. It was a mess!
Mim - Paulc is right - nothing slows the disease down, if it helps it will allow them to stay cognitive function longer. Eventually the disease will go beyond any help they get from the medicine. My husband is on galantamine, has been for 4 years. I asked about stopping it and his doctor said no for know. Is it helping him? the only way to to know is to stop it. We had a geriatric doctor that was with us for a short while. He said he would take patients off but watch them carefully. I think he said if he noticed a change they would immediately go back on it - all within 2 weeks.
I am the only one with Lloyd 24/7 and I am not afraid to try things with the medicines. Everyone else is at the business end of it when it comes to Lloyd. They want him to take more and more so they can make more and more money. I am the only one who will actively do what I can to reduce his medication for the most part. For anybody else it would just be bad business. Don't be afraid to try. Just do it gradually.
I see all the comments concerning Namenda (?) & Aricept - hubs isn't on either one, just Exelon. I presume they are all in the same family of meds, or are these other two for other problems associated with AD? I guess I'd better be writing down questions for the next doctor visit. I do have to say, our doctor seems to be of the mind not to put him on so many different medications - do what is absolutely necessary & best, but not to over do. He doesn't actually say it in so many words, but I get his drift. Weigh the options.
Mim they are the same drug family but do it differently. My SIL had to go to the Exelon patch due to too much stomach problems with Aricept. Since the patch by passes the stomach directly, it often has less stomach and gastrointestinal side effects. This is one explanation:
Exelon Patch
The Exelon patch belongs to a class of medications called cholinesterase inhibitors, according to Drugs.com. Like other drugs in its class, it achieves its effects by increasing the amount of acetylcholine in the brain and potentially reducing dementia symptoms.
Aricept
Aricept is also a cholinesterase inhibitor and achieves its effects by preventing acetylcholine breakdown in the brain, Drugs.com says.
Read more: Exelon Patch Vs. Aricept | eHow.com http://www.ehow.com/facts_6369023_exelon-patch-vs_-aricept.html#ixzz2E9aaFSjt
My husband was prescribed Aricept immediately upon receiving the diagnosis. Within 3-4 months he started getting more volutile and irrational. I talked to family doctor, specialist, two emergency room doctors - all either said it was the progression of the disease and/or increased his meds. and still he kept getting crazier. I had him in the specialist's office the day he tried to jump off the 12th floor balcony and this clown said "oh that's too bad, I'll double his medication. Come back in a month." Husband's behaviours kept excalating for about 5 months more (including staying in bed 43 hours, trying to jump out of a moving car, drawing back his fist as if to punch me in the face, and much more) until finally after another call to 911 the police brought him again to Emergency and the doctor there decided to admit him for 3 weeks and reset his meds. Aricept was one of the ones to "get the axe" and we noticed an improvement immediately. Took a couple of months but DH is back to his old sweet self although still really forgetful. If any doctor now wants to adjust his meds. it's going to be a hard sell. I don't know how I survived those months.