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Medical Forum / Diseases and Disorders / Alzheimer's / March 2006New to group
I just found this group. My husband is a brand new AD patient. He just completed testing to rule out other possible causes for his symptoms and ended up with nothing it could possibly be but early AD. The Dr. put him on Razadyne and I am hoping it will help. Can anyone else here tell me about early AD and how the medications helped and for how long they helped. I know everyone is different but am thinking the responses will help me kinda know what to expect. Right now he is still pretty independent other than not being able to do math (which he majored in), stumbles over words a lot, and has minor confuson. Not being able to do figures is what made him realize he had a problem of some sort. Anita Maybe Anthony will see your post and respond. Gwen >I just found this group. My husband is a brand new AD patient. He just > completed testing to rule out other possible causes for his symptoms and [quoted text clipped - 11 lines] > problem of some sort. > Anita [Thanks for the spotter's fee, Gwen] >I just found this group. My husband is a brand new AD patient. >He just completed testing to rule out other possible causes for his symptoms and >ended up with nothing it could possibly be but early AD. >The Dr. put him on >Razadyne and I am hoping it will help. Can anyone else here tell me about >early AD and how the medications helped and for how long they helped. Well a.r., I was initially prescribed with Aricept. I don't really recall the earliest symptoms but, as far as I can recall, when they upped the dose, it hit me badly. I felt ill all the time (think it was nausea) and it made me very lethargic/sleepy (slept nearly all day/every day). I put up with it for awhile (some 3 months if I recall correctly). I eventually complained to the Neurologist who transferred me to Reminyl. That was a big improvement. I don't know if the dosage has been increased since then (circa 12-18 months). I did, however have a big problem with nausea (and sleepiness). I've only recently solved the nausea problem by not drinking more than 1 cup per day (and not having it as strong). Unfortunately, nearly all the ginger products available here have very high sugar content, sigh! >know everyone is different but am thinking the responses will help me kinda >know what to expect. [quoted text clipped - 3 lines] >confuson. Not being able to do figures is what made him realize he had a >problem of some sort. I've been around here for about 3 years. At first I was just increasingly forgetful to the extent that I'd forget what I was doing/writing. I think the Reminyl has helped a lot with that, i.e. reduced the frequency of the forgetfulness.. That forgetfulness made me stop working (I.T.) My comprehension is pretty good but my memory continues to degrade, especially for messages that are too long or too complex. My reasoning skills are also pretty degraded whether it involves complexity or depth. My reading seems to have survived intact so far. Good luck on your journey :-) anthony shipley Run away with me; I can make you unhappy. >I just found this group. My husband is a brand new AD patient. He just > completed testing to rule out other possible causes for his symptoms and [quoted text clipped - 11 lines] > problem of some sort. > Anita Hi Anita, Welcome to the group, though I am sorry your husband has this illness. Mostly we are either presently or former caregivers here, but we do have someone who has the illness, who also posts (Anthony Shipley). I found this group to be incredibly helpful when my mother in law developed alzheimers a few years ago, and I stayed on to share, although she passed away last April. We are a friendly group here, and I hope you stay.  SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >I just found this group. My husband is a brand new AD patient. He just > completed testing to rule out other possible causes for his symptoms and [quoted text clipped - 11 lines] > problem of some sort. > Anita Anita, welcome to the group no one wants to be a member of :-) From experience here all these type of drugs work for a while, in that they slow down the progression of the disease, sometimes almost completely for a while, but none work forever. How long they work for is extremely variable but 2 or 3 years I would hazard a guess is the avaerage before each drug becomes less effective and needs to be replaced with something else. Getting your husbands affairs in order now whilst he can reason well is worth doing, especially getting POAs for legal and financial matters for example, in case, or to be more realistic, for when, he wont be able to manage these things himself. SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com > I just found this group. My husband is a brand new AD patient. He just > completed testing to rule out other possible causes for his symptoms and [quoted text clipped - 5 lines] > kinda > know what to expect. Hello Anita, I am so very sorry about your husband. I do not have AD, but my grandmother did, and I have represented Alzheimers patients and their families many times in my 28 years as a practicing attorney. You will find that this is a very caring group of folks who are united by one objective, and that is to be helpful and supportive of those who are suffering from this horrible disease. Welcome. Will >> I just found this group. My husband is a brand new AD patient. He >> just completed testing to rule out other possible causes for his [quoted text clipped - 18 lines] > > Will Hi, Anita, I'm a newbie as well, so an extra special welcome! But I'll attest to everything else being said about the quality of the people here and about how much they care. I've already posted a couple of questions and I've gotten a lot of helpful advice. The only practical point I'll add is that the Aricept experience is dependent upon the person taking it. Anthony had problems when the dosage was increased; my wife has had no ill effects whatsoever when her dosage was brought up to what was recommended. Alan Anita, So sorry to hear about your husband's diagnosis. It must be terribly hard for him to do without the math he loves. Not all of us are caregivers of AD patients. My husband suffered tremendous short-term memory loss, multiple witnessed episodes of Transient Global Amnesia, aphasia (struggling to find the right word), cognitive damage, and other physical problems as well, all due to Lipitor, at only 10mg/day over 4 years. By the time he was off the Lipitor, his short-term memory was below the 1 percentile, and he could not process anything as long as a 6 word sentence - his short-term memory loss was that severe. It turns out, he is one of thousands suffering these same side effects from the most widely prescribed drug of all, a member of the statin class of cholesterol-lowering drugs, the most widely prescribed class of drugs in the world, and in history. (Lipitor, Zocor, Crestor, Pravachol, Lescor, Mevacor, and now some combination drugs that include statins.) There are now many studies and 3 books published on these statin adverse effects. You don't mention if your husband ever took a statin, or if statin use was one of the possible memory loss causes eliminated. In any event, my heart goes out to you both. You will find help and support in this group. Take care, Sharon >I just found this group. My husband is a brand new AD patient. He just > completed testing to rule out other possible causes for his symptoms and [quoted text clipped - 11 lines] > problem of some sort. > Anita >There are now many studies and 3 books published on these statin adverse >effects. Cite! Isn't it strange? I've been asking for reputable studies regarding the comments about the statins in here. Now, Sharon why don't you tell us what books they are and what other studies refer to them? anthony shipley Run away with me; I can make you unhappy. Anthony, I have posted them before, but look at the new thread for the info. Thanks, Sharon >>There are now many studies and 3 books published on these statin adverse >>effects. [quoted text clipped - 10 lines] > > Run away with me; I can make you unhappy. Anthony, Please see the new post "Dementia can be due to Statin adverse effects" It should satisfy your request for citations. Take it slow, look at the ones of interest one at a time. Last time I responded to your request for citations, you said you became overwhelmed and seemed to have a difficult time viewing them all. BTW, you are very lucky. None of these were available when Lipitor stole my husband's memory. It has been a long time coming, but now people can find out this information and perhaps prevent severe disabling memory loss by earlier intervention. Enjoy the citations. Sharon >>There are now many studies and 3 books published on these statin adverse >>effects. [quoted text clipped - 10 lines] > > Run away with me; I can make you unhappy. My husband is on Crestor. The Drs. don't seem to look at that as a possible cause. Where do I find good information that I might share with the Dr. to see if we can test that possibility. I don't want to create more problems by taking him off medications needed for other things. Anita > Anita, > [quoted text clipped - 44 lines] > > problem of some sort. > > Anita > My husband is on Crestor. The Drs. don't seem to look at that as a > possible > cause. Where do I find good information that I might share with the Dr. to > see if we can test that possibility. I don't want to create more problems > by taking him off medications needed for other things. > Anita Anita, Sharon is a bit of a troll, you know. She harps only on this one issue, that of statin drugs. She is not a regular participant in this newsgroup, nor does she have any interest or help for the stresses caregivers experience. I am not saying there are no problems with statin drugs, but I think Sharon is over stating the case. I personally cannot take statin drugs, they make me very weak. Memory issues may be connected to them as well, but surely not to the degree Sharon says. My advice to you is to investigate this through your doctor, and make your decisions based on a more complete picture, than just one person carrying on a nearly troll like vendetta against this one class of drugs on the internet. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') >> Anita, >> [quoted text clipped - 60 lines] >> > problem of some sort. >> > Anita >> My husband is on Crestor. The Drs. don't seem to look at that as a >> possible [quoted text clipped - 16 lines] > on a nearly troll like vendetta against this one class of drugs on the > internet. Evelyn, I know there is some basis to the statin-dementia link because my MIL's doc mentioned her taking Lipitor as one of the things they ruled out to arrive at the diagnoses of Alzheimer's. I have noted the docs pushing statins like candy including my own PCP when my cholesterol level was slightly elevated. When Hubby switched to Benecol, I did too, and my cholesterol levels came down. Statin side effects are also the reason my hubby's cardiologist recommended trying Benecol first to lower his cholesterol. Thankfully, it worked for him too. I'm not going to try to post links because they've appeared here in the past when the topic came up. But I won't discount it because I know people that have had adverse reactions to statins. Maybe I just take exception to labeling someone as a troll when I know the subject they mention is a valid concern. It's a concern I share because I feel that statins are as overused as ADHD drugs. Karen >>> My husband is on Crestor. The Drs. don't seem to look at that as a >>> possible [quoted text clipped - 34 lines] > > Karen Hi Karen, I am not saying there is no merit to her claims, since I am one who cannot take statin drugs either. Besides which, I think that heart disease has a lot more behind it than just cholesterol levels, and that it may actually be founded on junk science. Meanwhile a lot of drug companies are getting rich on it. I am also not saying that the day may not yet come when they view this cholesterol mania as some sort of voodoo medicine. Those comments should let you know that I am definitely not one who thinks statins are some kind of a cure all for heart disease, or that they aren't overprescribed right now. I just am saying that it is a possibility, not a guarantee, and that people should look into it with good sound medical advice, not using my opinion or hers, as their only guide. I participate in other groups too, and I never see Sharon posting on ANY other subject than this one, in the groups she frequents. That, and that fact alone, makes me nervous. When I think "agenda" on newsgroups, the word "troll" too often comes to mind. If I am mistaken, I apologize, but I think we all need a "heads up" when this sort of thing comes up. Notice that Tom the "iron" troll, does it too? Too many people use these forums to put forth all sorts of wacky medical theories, and taking advantage of sick people to do that is horrible behavior. For my part, if Sharon posted about some real personal experience with a loved one who had alzheimers, I would have probably remained silent. So please pardon my rant.....I just may be seeing too many trolls on these groups lately....:-) Best Regards, Evelyn (to reply to me personally, remove 'sox') > Anita, Sharon is a bit of a troll, you know. She harps only on this one > issue, that of statin drugs. She is not a regular participant in this [quoted text clipped - 6 lines] > based on a more complete picture, than just one person carrying on a nearly > troll like vendetta against this one class of drugs on the internet. anita may have a one-note tune, but she is NOT wrong on this issue. yes, indeed severe memory issues ARE connected with statins! i personally know several folks who can't take statins because it caused very bad short term memory loss for them, similar to early onset AD. one of them only had a partial recovery when he went off lipitor several folks who have had this happened have sued the drug companies involved, but they can afford to pay for big name "experts" to defeat lawsuits. that's why you haven't seen any headlines about people winning lawsuits about it. statins are a real and documented danger, which is why my doc won't prescribe them unless the patient has very dangerously high cholestorol levels, a family history of blockages or heart disease, and has tried every other way to lower cholestorol. my advice if the symptoms only presented AFTER the patient started taking statins is to consult with the doc, change the diet to veggies and fish, increase exercise if possible, and stop statins for a month to see if memory improves. i would prefer to die quickly from a heart attack or arterial blockage than to die slowly from AD. Does anyone feel if a alz.patient gets off statins it could help there memory now? > Does anyone feel if a alz.patient gets off statins it could help there > memory now? only if the statins are causing it.. its a v small percentage of people who are seriously affected (even if you believe the anti-statin stuff) so the chances are v small it is the cause in any one case. I would hazard a guess that unless they are under 60 and their memory problems came on very quickly after they started taking statins, its a vanishingly small chance. having said that, its hard for me to see the benefit of someone with Az taking statins in any case, since the point is for longer term benefits, say 10 years plus, to increase your chances of not getting a heart attack. If you have Az, your life expectancy isnt much better than that anyway. Not sure what anyone else here thinks about that, but if it was me, prolonging my life for an extra year or two, when that is going to be at the worse end of Az symptoms, isn't something I'd volunteer for. FWIW I had a checkup before Xmas, cholesterol was increasing, I have just had another checkup, I have reduced it by 25% by taking that margarine with sterols in it (for which I havent seen any reported side effects), exercising more, and eating more veg. I think for many people (not all) this is all thats necessary, (if they can be bothered to do it, popping a pill is easier of course). I think ER has done the same with the same effects (diet, not pill popping :-) SignatureTumbleweed email replies not necessary but to contact use; tumbleweednews at hotmail dot com They actually put the veg sterol esthers in pills for those that would rather pop a pill. My brother's doc is trying to get him on them without trying dietary change, education, or anything else. It reminds me of the HRT routine women used to go through at mid-life -- take hormones to keep your bones strong and help your heart stay healthy! We found out that wasn't quite the way it worked and I suspect it'll be the same with statins. We took my MIL off of statins because we thought it might be the reason for her backaches. She hasn't had them since we discontinued it. But her doc had ruled out statin induced dementia, I just don't remember how he did it. Karen ----snip---- > FWIW I had a checkup before Xmas, cholesterol was increasing, I have just > had another checkup, I have reduced it by 25% by taking that margarine [quoted text clipped - 3 lines] > pill is easier of course). I think ER has done the same with the same > effects (diet, not pill popping :-) > FWIW I had a checkup before Xmas, cholesterol was increasing, I have just > had another checkup, I have reduced it by 25% by taking that margarine with > sterols in it (for which I havent seen any reported side effects), > exercising more, and eating more veg. i'm lucky enough to be genetically blessed, and to live where i have the best fresh wild fish in the country (alaska). although i was only able to drop my weight by about 10 lbs by swapping salads for spuds, rice, and pasta last winter, apparently the reduction in carbs was enough, along with continuing to eat fish 3 to 4 times per week, that my doc was astonished to find my cholesterol levels well below normal. sure am glad i like fresh salmon and halibut... ============================================================== Wild Alaskan Salmon Don't Catch Mad Salmon Disease! Dennis P. Harris NO_SPAM_TO_dpharris@gci.net http://www.ejuneau.net Tumbleweed, I agree with you. I stopped taking my husband to the cardiologist because if his blockage had gotten worse, I would not have had any surgery to correct it. Dieing sooner with heart problems is preferred to going many years with AD. Gwen >> Does anyone feel if a alz.patient gets off statins it could help there >> memory now? [quoted text clipped - 20 lines] > pill is easier of course). I think ER has done the same with the same > effects (diet, not pill popping :-) Evelyn, dear, you may have forgotten, but when I first came to this group I asked if it was also for caregivers whose spouses have been diagnosed with dementia by other causes. I was welcomed, and the group has been an important support for me. My husband has been fighting severe dementia for 8 years. His dementia was caused by statin drugs, and the diagnosis has been confirmed by several doctors. It is my fervent hope that others need not experience such a cruel, but PREVENTIBLE fate. So, yes, I do warn others about it. There is no reason any patient should lose short-term memory due to known adverse effects of the most commonly prescribed class of drugs in the world, and in history, simply because the adverse effects are not well-publicized. See my reply to Anita if you would like to read about his case. >> My husband is on Crestor. The Drs. don't seem to look at that as a >> possible [quoted text clipped - 83 lines] >>> > problem of some sort. >>> > Anita > Evelyn, dear, you may have forgotten, but when I first came to this group > I asked if it was also for caregivers whose spouses have been diagnosed [quoted text clipped - 12 lines] > > See my reply to Anita if you would like to read about his case. In that case you have my apologies. Like many other support groups, we have our share of spammers. I am glad to know you are not one. SignatureBest Regards, Evelyn (to reply to me personally, remove 'sox') Thank you, you are very kind. I admire your protectiveness of the group - I think being a dementia caregiver brings that out in all of us, protecting our loved ones like a mother lion. >> Evelyn, dear, you may have forgotten, but when I first came to this group >> I asked if it was also for caregivers whose spouses have been diagnosed [quoted text clipped - 15 lines] > In that case you have my apologies. Like many other support groups, we > have our share of spammers. I am glad to know you are not one. Anita, The UCSD Statin Study has some information, they are running the NIH-funded study on statins and their non-cardiac endpoints. Dr. Beatrice Golomb (MD and PhD) leads the study. http://medicine.ucsd.edu/ses/ http://medicine.ucsd.edu/ses/contact.htm has the contact information. Interviews with her are available on-line, such as: http://www.geriatrictimes.com/g040618.html http://www.statinalert.org/Golomb_interview.html There are 3 excellent books on the topic: Statin Drugs Side Effects and the Misguided War on Cholesterol, by Duane Graveline M.D. Lipitor, Thief of Memory, by Duane Graveline M.D. What you must Know about Statin Drugs and their Natural Alternatives, by Jay Cohen M.D. Both Dr. Graveline http://www.spacedoc.net (scroll down, there are an extensive set of links) see http://www.spacedoc.net/forgetfullness_disorientation_confusion_statins.htm and Dr. Cohen http://www.medicationsense.com/index.html have websites. The People's Pharmacy has run several columns on statin dementia/memory loss over the years. http://pharmacy.king-online.com/Pharmacy_20060208/index.php http://www.peoplespharmacy.org/archives/editorial/are_cholesterol_drugs_linked_t o_memory_loss.asp Yahoo Groups posts a Statin Adverse Effects Frequently Asked Questions that is almost entirely references to published Medical Journal studies and reports, suitable for taking to your physician. It is over 80 pages long, and covers a wide array of statin adverse effects with a table of contents. (I will post it in a new thread) The dementia caused by statins is just as disabling as Alzheimer's, but because the cause - if diagnosed property - can be halted, the dementia is not fatal. Patients who are taking statins and diagnosed with Alzheimer's need to have statin adverse effects ruled out as a cause of the memory loss. My own husband's story was featured in a Smart Money Magazine article by Eleanor Laise (investors also need to know the harm these drugs can do). A reprint is available at this link: http://www.n3inc.com/SmartMoneyReprint_103003Web.pdf His story was also mentioned in a Los Angeles Times Sunday Magazine article, a reprint at: http://www.medicationsense.com/la_times_on_cohen.html Another man's story: http://www.tahoe-world.com/article/20040129/NEWS/401290101/0/FRONTPAGE Our family has been dealing with his profound dementia for over 8 years now. As everyone who reads this ng knows, the entire family is devastated by dementia. You are fortunate to have these references above available to you. None of this information was available on-line at the time my husband's memory loss began, and it took a series of experts, including the doctors mentioned above to save him from a downward spiral that could have resulted in death. It may be that your husband's problem is not the statin drug, but you owe it to yourselves to find out. Please contact the statin study, and/or have your doctor contact the statin study, as well as reviewing the literature. Take care of yourself, too. There was a recent study that showed that the risk is very high to the spouse of a dementia patient, even higher than the risk of a spouse whose mate dies. http://www.nih.gov/news/pr/feb2006/nia-15a.htm > My husband is on Crestor. The Drs. don't seem to look at that as a > possible [quoted text clipped - 67 lines] >> > problem of some sort. >> > Anita >I just found this group. My husband is a brand new AD patient. He just > completed testing to rule out other possible causes for his symptoms and [quoted text clipped - 11 lines] > problem of some sort. > Anita Hi Anita....Welcome to the place where we all wish we didn't have to be here. This is a good newsgroup to get different perspectives for help with alz. Most contributors make valid points and don't let the occasional troll turn you off. Even if you only want to vent a little--we've all been there, feel free to do so. This disease is so stressful to all involved and you need all the help you can get. My advice is: Take care of yourself first. My mother's dementia has been a long road and quite different than most here. Twelve and a half years and counting. She's like a forgetful child and has never displayed any of the paranoia that can be contributed to Alz. But her short term memory is practically gone and the difficulty with getting her to bathe is classic as well as wearing the same clothes day after day. She's in independent assisted living for now but frankly I don't how long before she will need memory care. The bad days are becoming more frequent now...........June I wish that I could say welcome to the group, but I wish with all my heart that you could just go away. I don't say this out of meanness, I say it out of sadness. I hope you find support, comfort, and TLC from each of us here. I deal with a parent that suffers from AZ. I search this group and every medical site that I can to find the cure for this damned disease, knowing that I alone can save my mom, but still with the same results. One day I hope to wake up finding out this has just been a horrible, horrible nightmare. At the end of the day, just think of the love that you have for the one in your life that suffers. It is the only part that makes this even close to bearable. now that a grown burly man like myself has gone to crying alone, I'll sign off. I hope that you do find some ease here with the rest of us. God bless and good luck. KG in Florida >I just found this group. My husband is a brand new AD patient. He just > completed testing to rule out other possible causes for his symptoms and [quoted text clipped - 11 lines] > problem of some sort. > Anita |
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