Comment Author kathi37 CommentTime3 days ago edit delete
I wonder if anyone else's spouse is having trouble with the adhesive from the Exelon patch? G is a mess! He rips the patch off during the night as it itches so badly and his body is one big red welt!. I have a call in to the Doc, but doubt there is much to do about it. When on a hormone patch, I had similar problems, but not to this extent.
Comment Author bluedaze CommentTime 3 days ago edit delete
from another site I learned this is a common problem. So severe that the patch has been discontinued. I'm surprised the manufacturer hasn't addressed the problem.
Comment Author Sunshyne CommentTime 1 day ago edit delete
Kathi, loads of people have complained about the exelon patch wreaking havoc with the skin over on the Alzheimer's Assoc discussion forum.
I gather that it's not always listed as a "side effect" because it does not appear to be related to dosage. RxList.com says: "The vast majority of patients participating in the controlled clinical trial had either no observed skin irritation or mild to moderate skin reactions. The incidence of severe reactions was very low regardless of administered dosage."
Kathi37 - my husb started the PATCH back on 7/22/08...so far, no problems at all...sorry you are having problems -- you may have to go to the pill, which is 2x's a day if you continue with the Exelon. Hope things get better for you & husb...any additional "issue" is always, well, something more...call his dr. & see about the pill if he hasn't already tried that.
Thanks for the comments as usual..however, it would be nice if his Neuro had bothered to return our call!!! Not! G's other Dr. commented that once a diagnosis has been made, he has found that many neuros don't want to be involved any longer...he wasn't quite that blunt, but nearly. Really P's me off. Reading about the pills makes one wonder about the side effects they produce. Sounds nasty. of course, since we are dealing with FTD, there is controversy about anything being effective for it anyway. Can't win for losing?
I'm so glad to have read this. My DH has extremely sensitive skin, and I have been asking for the patch because he doesn't like taking pills. Well, I wont ask anymore.
Kathi, if your husband has FTD, why is he on Exelon? It not only isn't effective, it may make his symptoms worse.
Cholinesterase inhibitors -- exelon, aricept, razadyne -- do not help FTD patients. These drugs temporarily increase supplies of the messenger chemical acetylcholine to failing nerves, but FTD does not affect nerves in the acetylcholine communication system.
So unless your husband has a mixed FTD/AD syndrome, I'd talk to the doctor about whether you need to wean him off or can just stop.
Namenda belongs to a different category of drug -- it is an NMDA receptor antagonist. There have been some instances in which FTD patients were given the drug and responded well. See:
Swanberg, Margaret M. 2007. Memantine for Behavioral Disturbances in Frontotemporal Dementia: A Case Series. Alzheimer Disease & Associated Disorders. 21(2):164-166.
Patients are currently being recruited for three clinical trials to confirm whether Namenda might be broadly useful in helping FTD patients. Namenda is usually pretty well-tolerated, with few side effects, so you might want to talk with the doctor about trying it out.
He did try Namenda, but it made him a total zombie, and he refuses to use it. We have a Neuro appointment coming up, and I'll discuss it with him...since he hasn't returned my call this last week ??? I must say I have seen a downhill trend with G since he has been on Exelon, but who knows if that is the cause? I will check out the sites you mentioned..thanks again.
He was tried on Aricept first which made him wild...beyond horrible, then the Namenda low dose. I found it odd as he has never ever had a problem with any meds...I am allergic to the entire pharmaceutical world, but he never has been. Me thinks some of this stuff is just nasty and toxic to anyone's system. He neverf got beyond the low dose of Namenda.
Not the entire medical community, bluedaze, just a lot of them. (Marsh, you know I love you.)
I've been working on a post / new thread topic on the stigma associated with dementia (long story, Maggie Thatcher got under my skin) and one of the papers I found was very interesting ... it's on stigma and mental illness (don't shoot me for calling AD a mental illness, please ... cognitive disorders are often categorized by those in the medical field as falling under the general umbrella of "mental disorders"), and it says:
"Physicians' attitudes toward the mentally ill are also increasingly recognized as part of the problem of stigmatization. The patronizing attitude of moral superiority toward the mentally ill in the early 1960s, specifically in mental hospitals, has not disappeared. This was reported by Erving Goffman in his classic study. A Canadian insurance executive told a conference of physicians in May 2000 that they should look in the mirror for a picture of the ongoing stigmatization of the mentally ill. The executive was quoted as saying, "Stigma among physicians deters the detection of mental disorders, defers or pre-empts correct diagnosis and proper treatment and, by definition, prolongs suffering." "
Marsh-you know I love you, too. Sunshyne it is difficult to treat or accept what you cannot see. I know this is a gross simplification but as a part of the medical profession I was guilty of not liking to cope with mental illness in patients. Diagnosis was not cut and dry. It took to long to know if meds would work, then took to long to get out of the system if they didn't. The general populace remains uneducated in disease that does not affect them. Let a neighbor's kid develope leukemia and they'll be out pounding the pavement. Dementia just isn't a "pretty" disease. No poster children, understanding or sympathy.
I think there are 2 reasons it seems the medical profession is "against us". 1) Many of them don't know much, if anything, about dementia, and 2) They are frustrated by not being able to do anything to cure the patient. I have realized lately that whenever I take my wife to her AD doctor, he tests to see if there is any deterioration in her mental status and asks me about things like eating, dressing, incontinence, etc. The next time he sees her I am going to suggest that he spend more time checking on the caregiver, including physical health, mental health, and spiritual health. He also could help by suggesting resources for help in caregiving. So far, none of her doctors have done any of that. My doctor does check a little bit on these items, but only superficially.
.>He also could help by suggesting resources for help in caregiving. So far, none of her doctors have done any of that.
Boy, ain't THAT the truth!! I think we should put our heads together and come up with a one-pager that we could give to our neurologists with the MOST vital information for caregivers of dementors. Not quibble about AZ or EOAD or the other varieties. Maybe give them a dozen copies and let them make more themselves.
And maybe not giving too many web references, right then and there. A few of the most useful, obviously, like this and bigtreemurphy but some real news-you-can-use that's not on the web.
Yes, I think a lot of the problem lies with not wanting to work with patients who can't be cured. Can't be very rewarding, after all.
So Marsh, how would you suggest that we go about educating the medical profession? I know you were invited to speak (did you ever tell us how that went? I don't remember) -- how and why did you get invited? How could we encourage more of that? What else might be done?
I'm still casting around for a good topic for a proposal to NIH ... this might be it, if we could come up with good ideas.
Hey Sunshyne, what about dermatologists? I thought that was the perfect type of MD.... patients never get well, seldom die. Just keep having appointment after appointment and insurance pays and pays. Too cynical?
kathi, actually, yes. Just a bit too cynical. <grin>
Not only did I get well, he taught me exactly what I have to do to prevent breakouts, and what to do if I get a small one so it doesn't become a big one. And it works. I stopped seeing him at least 6 months before he retired and was never placed with one of his younger partners. It has been at least 3 years.
Marsh, Briegull, Starling -- Agree that something should be prepared & shared to "give to" neurologists to help them help others better...the "never get well", "can't be cured", "can't be very rewarding"...all that might be very true, but AD people are still humans, and humans deserve whatever they need to get through & survive with the best they can...we fired our neurologist after a while because of switching to a neuro involved with research vs. not...it was a totally different dr. when dealing in the "research" programs...maybe because that's their job, but honestly, the first dr. (not in research) didn't even give us the 800# or website for Alz Assoc...That would be Dr. Kevin Conner, neurologist in Arlington, TX...same neurologist for the Texas Rangers Baseball team -- as shown on his business card!! Oh we thought we were in such good hands...it was like "you have a cold, take these meds, we'll see you in 6 mths to see how your cold is doing"...In STARK contrast, his current neurologist just spent 45 minutes on the phone with me on Thurs of this past week trying to figure out what was going on with my husb because he was dealing with total restlessness and just much too much unrest!! Once I found out (Thurs @ 12:15pm) he was out until Tues after Labor Day holiday, I told the receptionist I needed to speak to him, or the neuro on call, or the nurse to talk about what to do...less than 45 min later, the neuro called & we talked things through...he is amazing!! While on his time off, no less!! Such a contrast to what the prev neuro was like, and from what I can tell by reading y'all's entries, totally like some of who you are dealing with as well. The Dr. must realize the need for those caring for the patients, while trying to help the patients the best they can...even if no cure is available...i am all for a "document" to share...sorry...just needed to let loose about this injustice from one neuro to another...
There is a caregiver's bill of rights, but there are things missing, like being able to talk to the doctor without the patient present when the disease is something where the patient is not going to be making most of the decisions.
Kathi, yes, a tad bit too cynical. For one thing, I think there are a few dermatology problems you haven't seen that would change your mind in a big, fat hurry. GROSS.
I don't think it has to do with a particular specialty, I think it's very individual. Neurologists specialize, after all, and some of them like to work with migraines, some with movement disorders, and some, actually, with AD patients. One of the most wonderful men in the world was the head of oncology at the hospital where my husband spent his last weeks. The dear man gave me his home phone number, and when I used it in desperation, sat up the entire night orchestrating a response to make sure my husband -- unquestionably terminal from day one -- was seen to. His "primary" oncologist couldn't even bear to come into the hospital room after a while, since he couldn't understand why my husband hadn't died, couldn't face me.
So I think the big questions are (a) how does one find the doctor who cares enough, is strong enough, to work with terminal -- hopeless -- patients? and (b) how do we educate the others to the point they do a tolerable job at diagnosing and caring for our ADLOs?
Re that Exelon patch, DH is due for a prescription renewal toward the middle of October. I think I'll ask his Dr. if he will prescribe the pills instead. He hasn't had any side effects from the patch but they do leave little circles on his back from the adhesive. It's a nuisance to me to wash off. Besides the patch is extremely expensive. i think the pills might be cheaper. I'm in the business of trying to save money these days and anything helps.
I believe that knowing where others live on this site and maybe others helps in hopefully finding good Drs. Some of us live in the same state. If we keep looking for near by caregivers, maybe one could help by recommendations. Thats one more reason to add to the "where are you from" thread. Everyone is so willing to give hints, advice, places to link to, etc. makes this site a big plus+++++
hmm that 1st sentence constructed wrong. Should read knowing where others who visit this site live, and maybe other sites as well, helps etc.. I need more coffee...
Mawzy, the patch is supposed to help minimize adverse side effects, by by-passing the digestive system. If you switch to pills, your husband may have more problems with nausea, diarrhea, etc.
Warning to others: I'm back on my hobby horse about huperzine A. You may wish to skip the rest of this post.
Mawzy, if you're getting in a real pinch about costs, talk with the doctor about changing from Exelon to huperzine A. They use it in China for treating AD, and it's reportedly more effective and has fewer side effects than the synthetic cholinesterase inhibitors (aricept, exelon, razadyne). There's a big clinical trial just wrapping up in the U.S. to confirm these reports, establish the most effective dose, etc. An open-label phase was added to the original double-blind phase and then was extended twice, because the results were so good.
Huperzine A will cost you about $5 per month when you order from some place like VitaCost.com (Be sure to buy a formulation that is just the huperzine A -- some pills have a whole bunch of other things added).
My husband is on 200mcg twice a day, that's currently what they recommend for maintenance. I was told if he starts to slip that I could raise his dose as high as 400mcg twice a day -- they've done safety studies at that level, seems to be fine.
Also, Razadyne is going generic in December. That will save those of us who have LOs on it a ton of money. The funny thing is that it is not the drug that is currently "approved" by my husband's Plan D.
My hb has been switched from Aricept to 4.6 Exelon and is now on 9.5 Exelon. No side affects (skin sensitivity) and no slowing of progressing on the downward slope. Will ask about Huperzine A and Razadyne when we see neuro next. So, I have 14 4.6 patches to give away. Not many, but even a few may help.
FYI, another thought, the PATCH means less pills to swallow...that was our problem...DH is now @ the point where he can no longer figure out how to take pills. The patch, adhesive circles and all, are still better for us as it is one less pill to work with. I am already crushing and apple-saucing or pudding the rest of those he has to take....just a thought for those thinking of switching back to pills.