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Exelon patch does what it is supposed to do
Iris L.
Posted: Saturday, May 14, 2016 3:40 PM
Joined: 12/15/2011
Posts: 16415


This month, May 2016, marks seven years for me on Exelon patch.  My neurologist offered me a box of samples in February 2009, but I was afraid to use them, until after I had had continued scary episodes with leaving food unattended on the stove until it burned and set off the smoke alarm.  Some wonderful caregivers told me to stop using the stove.  I knew I was at a crossroads, and that Exelon patch was my last chance at living in my own home.


I began the 4.6 mg sample patches.  Within two weeks, maybe sooner, I noticed improvement.  Before then, I also had trouble with hesitation in speech, and trouble with word-finding.  I was embarrassed at how slowly I spoke.  People noticed.  I also lost things and just had a great deal of trouble functioning in my day to day life.  BTW, my internist told me I just needed a hobby.


I had two episodes of bradycardia (slow heart rate) and my appetite was reduced.  Both side effects never persisted.  At my return visit, I told the neurologist I wanted to go to the higher dosage, 9.5 mg.  I have been on that dosage ever since.  In July, I was begun on Namenda, titrating up slowly from 5 mg to 20 mg.  I have been satisfied with my responses to both medications.  My friends, who did not know that I was on medication, told me that I was speaking better and seemed more "with-it."


Mimi S. was the person who promoted Exelon patch along with the other aspects of Best Practices as improving functioning and prolonging the early stages.  Although I never have been given a diagnosis of Alzheimer's Disease, my functioning in 2007-2009 might have been placed in stage 4, with trouble with bill paying, marketing, meal preparation, and a flat affect.


Now, I believe I could be staged at stage 3.  I still have difficulties, but I manage better than I did in 2009.  Cognitively, I am doing better than I was doing in 2009.  Exelon patch and Namenda and Best Practices did this for me!  Hallelujah!


I feel so disappointed and unhappy when I read what doctors and other people say about Exelon.  They say it doesn't help at all, or only helps for 18 months at most.  I have been in it for SEVEN YEARS.  I was warned by my second opinion neurologist at a university ADRC not to even try Exelon patch.  I am so glad I ignored her warning.  


I wish everyone could have the response that I have had.  Sometimes I want to cry when I think of how many PWDs are not being helped because of other people's ignorance and bias about Exelon.


Exelon patch is not a cure for AD.  It was supposed to improve my functioning, and prolong the early stages.  That is exactly what it has done for me!  I am very satisfied with Exelon patch.  I am looking forward to my next seven years on Exelon patch.  


Iris L.


eaglemom
Posted: Saturday, May 14, 2016 6:40 PM
Joined: 3/7/2012
Posts: 2486


Well said Iris. I too wish everyone would 'have a voice' in the medicines that are available. If you don't think your responding to something, try something else. This is where you have been your own best advocate.

eagle


jfkoc
Posted: Saturday, May 14, 2016 8:05 PM
Joined: 12/4/2011
Posts: 18334


Thanks for such a helpful post!!!!!!!!!!!!
Michael Ellenbogen
Posted: Saturday, May 14, 2016 8:21 PM
Joined: 11/30/2011
Posts: 3058


 The reason they say 18 months is because that is how long the studies were. I tried to address this last year and no one is willing to talk about it. Including AA who knows of these issues. Many people stop because of that and then they decline. It is very sad.


Iris L.
Posted: Saturday, May 14, 2016 8:48 PM
Joined: 12/15/2011
Posts: 16415


Michael, that is why I wanted to post about my success.  The doctors can be so discouraging, then the patients don't even want to try.  


Iris L.


Michael Ellenbogen
Posted: Sunday, May 15, 2016 7:29 AM
Joined: 11/30/2011
Posts: 3058


I know Iris, but also look at it from the doctors side. They are only saying what the drug manufactures tell them. A drug manufacture would be in serious hot water if they said it lasted one day over the 18 months. Many are starting to see the benefits and I am not sure how to get them educated. I reached out to some of the highest level people in the country last year trying to bring this change. They had all agreed this was a issue and they all said it was someone else responsibilities to get the word out. It real stinks when you know something so simple cannot be fixed. But this has given me a new Idea as I now have a connection at the FDA. Maybe they may be able to help. I have already tried NIH, CMS. ADI and AA and failed. I am open to other ideas if I missed any. I even have doctors who eve the evidence that can present the case. These are famous doctors. They were trying to help me. It was not easy.

 


BillBRNC
Posted: Sunday, May 15, 2016 7:51 AM
Joined: 12/2/2015
Posts: 1018


Iris, Michael, and all, I started the low dose of Exelon pills about 5 or 6 weeks ago. I had some significant side effect, but they slowly went away, and none now. On the cognitive side, within two days or less of starting, my confusion and memory got significantly worse, but they improved to the pre-Exelon state around week 3. As I sit here today, I am probably about the same as before I started, maybe a tad better or worse. My wife thinks I'm a tad better, while I would lean towards worse or the same. So I'm probably about the same. The plan is to up the dosage in about a month to 6 weeks, then up it again in 60 days or so if the side effects are ok. Then the idea would be to start Namenda at the same time.

My question is the doctor said if I didn't notice an improvement within the first week or so, at least the first month to two months, then the Exelon isn't working for me and I should stop and possible switch to Namenda. Since the meds work differently, it obviously would be good to benefit from both, which is my goal...to end up taking both by starting Namenda after I reach a stable point on a higher dosage of Exelon. So, where do I stand since I haven't noticed a truly noticeable improvement after 6 weeks on low dose Exelon? Next question, would taking Exelon when it is not working hurt the potential benefit of taking Namenda at the same time?

Just wondering. I know there might not be solid answers, but just wanted your opinions and the opinions of anyone else. I'm a little bothered by not noticing a benefit from Exelon, but I also thought that these drugs didn't improve, but only helped to keep you from going downhill for a potentially long period of time.

As you can see, I've come full circle on these drugs. I started off thinking they were junk. I don't know about that, and I want to benefit from them if there is a benefit to be had. Too many people claim to have benefited for me to simply ignore them because I'm suspicious of drug companies. In fact, folks here have convinced me to give them a real true chance.

Thanks.

 


BillBRNC
Posted: Sunday, May 15, 2016 7:59 AM
Joined: 12/2/2015
Posts: 1018


Michael, the problem with promoting the drug beyond its original approval zone come from FDA and the law. The drug companies would be criminally liable and civil liability if they promoted or advertised the drug for use beyond what FDA approved in the original label, and the orginal label was based on the clinical trials. In order to change the label, the drug companies would have to spend millions to redo the clinical trials to go out to a further end point in time, and it just isn't worth it to them, particularly since the drugs are now in generic form. They would rather come up with a new drug that has patent protection. All this means nothing since doctors are free to prescribe off label use any time they want to, and it is routine in the medical field to prescribe off or beyond the label. The deal is the drug companies can't talk about it, and the doctors fear malpractice by talking too much about it, but they still do it if they believe in it. It is like Marinol in that docs can prescribe it for Alz even though it is not approved for Alz, but the drug companies can't promote it for Alz. And getting FDA to change its regulatory scheme is just plain impossible in the real world, and they would never do it just because of a one drug exception to their rule. It is just a mess, but that's the way it is. They think they are protecting the public, and they realize the doctor is free to do whatever they want anyway.
Iris L.
Posted: Sunday, May 15, 2016 11:44 AM
Joined: 12/15/2011
Posts: 16415


Michael and Bill, thanks for explaining where the 18 month limit of effectiveness comes from.  I can understand the legal difficulties for the drug companies better.  But I am still disappointed that more patients are missing treatment.  


My neurologist never put it into my mind that there was a time limit of effectiveness.  He just told me to try and see how it worked for me.  I think this is how doctors should put it, and not put a time limit.  


More patients come to this board with discouragement about the medications than come with some degree of hope.  Very few medications cure chronic disease, , but people still take medications for them.   


I never expected a cure, but I hoped from some improvement, and that's what I got.  I was afraid that I was close to being unable to live independently in 2009.  Now I still live independently, and I can see myself doing so for the next several years.  This is success for me.


Bill, you might write down what symptoms you have now that are giving you problems for which the Exelon may help.  In my case, it was forgetting food on the stove, which was in my short term memory, and difficulty with speech, also daily functioning--I had trouble with every ordinary, daily task.   


I had improvement in every area.  In fact, now that I think about it, the improvement began after a few days, not two weeks as I posted above.  Also, see if other people notice any change in you.  You might wake up one morning and think do yourself, "my life doesn't seem to be as difficult as before."  That's how it was for me.


Unfortunately, it doesn't help everyone.  I'm glad you are giving it a trial, Bill.  Personally, I think you should try the higher dosage, and observe your response.  This is because you say there might have been some improvement.  But write down what you observe, because it is hard for us to be observational when our memories are poor.  See what other people notice about you, too.


I don't think you should add Namenda until you have reached the permanent dosage of Exelon, but that is something you should discuss with the prescribing doctor.  


In the meantime, keep doing activities, so you can have something to assess.  


Iris L.

 


 




BillBRNC
Posted: Sunday, May 15, 2016 12:35 PM
Joined: 12/2/2015
Posts: 1018


Iris, I've been talking a lot today with my doctor wife about this, and she is talking with her partner who is my family doctor who will follow me from now on. Both of them also talk with the neurologist in town about the meds and mixes. I'm not going back to the medical center. Anyway, yes, I am going to increase the Exelon dosage to 3 mg twice a day and see how that goes, but not until after I have moved up from 10 mg of Celexa once a day to 20 mg once a day, and that will likely happen in a week or two. Then we will see to it that the increased Celexa is working as expected, and then we will increase the Exelon dosage to 3 mg twice a day. After that calms down, then we are going to consider adding Nemenda and moving up to the lower end of the normal adult dosage. The idea is to leave some room to increase things in a year or so or as conditions change. At least that's the current thinking, which is always subject to change depending on what my wife's partner and the neurologist thinks, but I think that is what they are thinking. It also is what they were thinking at the medical center, so we didn't just make this up. I'm still interested in everyone's experiences here. Oh, and I've read several articles that solidly back up the idea that the Alz medications frequently work just fine for many years and that 18 month idea was due to FDA. There apparently are some folks who seem to lose the benefit down the road, but they really don't know as it could just be that the disease progressed beyond the medication's ability to help. This is one heck of a complicated disease is all I can say, but you and others sure are helping me out a lot. I can't thank everyone enough.
Michael Ellenbogen
Posted: Sunday, May 15, 2016 4:54 PM
Joined: 11/30/2011
Posts: 3058


Iris - I sent a email to you on this topic. Let’s see if we can change some minds.

 


Gig Harbor
Posted: Sunday, May 15, 2016 5:12 PM
Joined: 3/10/2016
Posts: 627


Iris and Bill,

My husband started on Aricept and after three months added Namenda. Now that he is at the full dose I can notice good changes. He is more self-motivated as far as doing yard work and home repairs. He is more like his old self. He slows down if he is tired but otherwise he is moving faster in all the things he does during the day. He makes a lot fewer comments about not being able to remember although his short term memory is still terrible. However, if I remind him that we spoke of something he does remember it. He sees his neurologist in June and I will ask about adding excelon patches. If he can stay at this level I don't feel like AD is defining our lives and that is huge. He is not EOAD since his first symptoms probably were evident in 2010 when he was 69. His sister was 60 when her symptoms first began and is now 85 and in stage 6. She only took the meds intermittently through the years.


Iris L.
Posted: Sunday, May 15, 2016 6:09 PM
Joined: 12/15/2011
Posts: 16415


Gig, I am so glad your husband is having a positive response to the Aricept, and I hope it continues for many years!  


Exelon patch is in the same class as Aricept, so there is no need to use both at the same time.  In fact, Exelon and Aricept should not be comined at all.  


The patch is recommended to avoid the possible gastrointestinal side effects that some patients experience.  My neurologist offered me the patches from the beginning.  I think it is worth taking if I stay plateaued and progress slowly.


Iris L.


Alzwell
Posted: Sunday, May 15, 2016 10:49 PM
Joined: 3/1/2015
Posts: 2140


Iris, I am so happy to find your post! In October 2011 my hubby went to his PCP without my knowledge and told he was having some memory problems. The dr gave him the sample box of 4.5 mg and said, "If these help, let me know and I'll write a prescription."  I had seen commercials for Exelon so when he came home with the box and told me what the dr said, the light bulb came on for me. And it explained so much of what I was seeing. AND the best part is, we saw immediate improvement for four or five months. We asked for the next higher strength, and a neurolopsych referral after six months, because symptoms were returning. Testing was completed and in April of 2012. the alz diagnosis came. He was then placed on namenda which was titrated up. 

I am happy to report the same great results as your, Iris. He does experience fatigue, but overall alz symptoms have improved. 

We tried a different neurologist about two years ago because she was touted to be excellent. Well we only went the one time and left greatly disappointed and a little confused. She listened to our story, asked questions, while typing and YAWNED all the way through our interview! She made comments to him like, You obviously aren't missing meals or losing your appetite. (He was average weight, probably stage 3-4) Do you ask the same questions? It seems you can follow a conversation. You tell me you've seen improvement since you started Exelon and namenda? The drugs don't work that way. They slow down the progression for just a little while, but they certainly don't improve anything. I don't think it's alz. We need to retest. 

it was obvious that she was only accustomed to treating elderly patients who weren't diagnosed until they were already in moderate to severe stages, who were losing weight and not able to hold a conversation. 

She also said all she could do was write scripts for ex and namenda because he wasn't needing behavioral meds. 

It was demoralizing and frustrating for both of us. I'm so glad she was not our only option for care. I hope she has learned a few things since then. 

Dana


Iris L.
Posted: Monday, May 16, 2016 2:15 AM
Joined: 12/15/2011
Posts: 16415


Dana, I am glad your husband is receiving benefit from his Exelon patches and Namenda.  I believe they do what they are supposed to do for some of us, which is to improve functioning and to prolong the early stages, with the emphasis on the early stages.


My second opinion neurologist, who was a neurologist at an Alzheimer's Disease Research Center, told me that Exelon only helps those who already have a dx of Alzhiemer's and not cognitive impairment.  So, for several months, I did not attempt to use the patches.  But eventually, I did, as I posted above.


I think patients need to try and see.  You never know unless you try.  It might work, or it might not.  


I feel so badly for those patients who are discouraged from using the medications, or who are told to wait until it is too late for the medications to have much effect.  I know there are many lurkers, and I wanted to post my experience as a counter-balance to what they hear from their doctors and their family and friends.  No one deserves to hear that there is no hope.


I call us Dementia Pioneers. We are the first generation of patients who are active in our own treatment, in following Best Practices and taking medications.  How is your husband doing now, since he has been on Exelon and Namenda since 2011?  I hope he has stabilized.


Iris L.


Alzwell
Posted: Monday, May 16, 2016 12:23 PM
Joined: 3/1/2015
Posts: 2140


Thank you for asking, Iris. He is stabilized. Before meds he had word finding and hesitation difficulty. He would respond to something someone said in a group of casual talkers, and by the time he formed his response it no longer fit or made sense. I don't notice that any more. The hesitation and word finding difficulty happens now if he is tired or stressed. He still remembers important things. He depends on me to a degree for that, I know. We are a team, always have been. At first he had difficulty getting dressed properly, and was getting lost in familiar places. He had paranoia and relationship issues at work, and all that was so very out of character for him. 

Since he retired, and his stress is so greatly reduced, and the meds are working, he again has a sense of direction, and has no confusion about dressing himself.  We are more than four years past his alz diagnosis. 

Mainly now I notice he may be beginning to not enjoy reading as much. He loves reading mysteries, and could not put one down. Since about the first of the year, he will Start one but not finish it, and will often turn on the tv and appear to read while watching or listening. I'm not sure why he does this, or if he gets much from either one. 

He also gets past events mixed up when talking about something that happened years ago. And fills in with a few things that really didn't happen. That's only happened within the last year or so. 

He wants to use the computer for word games and puzzles and to check email but it having difficulty with that. He was very proficient in computer usage and programming before alz. 

He talks about having difficulty with math and numbers. I don't really see this because I do the banking, taxes, etc now.

But he is doing quite well for this long out, and I pray he and you will have many more good years.

God bless you Iris. Thank you for helping so many. You are still filling a need with your medical expertise plus your first-hand experience.

Dana


Iris L.
Posted: Monday, May 16, 2016 1:11 PM
Joined: 12/15/2011
Posts: 16415


I, like many of us, used to be an avid reader.  That has diminished.  I understand what I read, but I have trouble following the sequences.  


I usually keep the radio on all day, but I have noticed lately that if I need to concentrate on something, such as bill paying and writing checks, I must turn the radio off.  


A wise social worker told me to avoid multitasking and to do only one task at a time.  If I focus, I find I can get things done.  I also break tasks down into steps.  


Here's to many more years of stabilization for your husband and I and all the other patients.


Iris L.


 
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