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Anyone using Exelon
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: TonyNZ

quote:
Namenda

My wife got horrible leg cramps from Aricept, so went on to Exelon patches. The patches caused rashes where theys had been. She is now on Exelon capsules twice a day and half an Ebixa (Namenda) morning and night. The full dose of Ebixa(Namenda) seemed to give her cramps as well. Who knows whether any of this helps? It sure drains the pocket. Hopefully this new GM-CSF Leukine might show more positive results when it is available.
Internal Administrator
Posted: Friday, January 6, 2012 1:06 AM
Joined: 1/14/2015
Posts: 40463


Originally posted by: ChristineC

My Mom was put on Exelon January 3 along with her Namenda. She has lost her appetitie, losing weight and now is having problems with her head. She hears swooshing sounds, is light headed nad dizzy. She had an MRI and other testd done yesterday. I want to take her off the Exelon, but Doctor wants me to hang in there for a couple of weeks. She gave me Magace to help her get her appetite back but we just started today so it is to soon to tell. Anyone have any problems or good results or opinions about Exelon? thanks.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Iris L.

quote:
Originally posted by "Roses":

My kids want me to volunteer, find new friends...I am 81 he is 87 and married 61yrs. We have done all that, volunteered for years, hospital,ronald mcdonald house, church, etc. and I really dont find the need for that. Cannot seem to get a group of 'ladies' my age to play cards during the day, all want to play at night (widows)so that lets me out. We do play cards every Sunday with friends and he does OK, not as good as he did before, but OK. I have put in an application at our local library to volunteer, but still have not heard. I am probably to old for them, but I will wait to hear.


It's nice to meet you, Roses. It seems that you and your DH have settled on a routine that works for you. I hope you get your library volunteer job; how can you be too old for the library? If they give you any trouble, may I make a suggestion for an alternate activity? I became an adult literacy volunteer through my local library system a few years ago. The training cost $10, took four weeks (on the weekend) and was free to the participants. There was also volunteer activity as an English as a second language program tutor. This program was also free to the learners. I thoroughly enjoyed it. If this is more involved that you want, some libraries have reading to children programs. I hope you find what you're looking for.

Iris L.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Victoria R

quote:
Originally posted by ChristineC:
but her blood pressure keeps droping for no apparent reason.


You may want to consider Lewy Body Dementia - blood pressure drops are very common with those with LBD. For more info: www.lbda.org
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: jellybeans

quote:
Originally posted by "Roses":
It is amazing to read all the different stories that come from one discussion. My dh was diagnosed with Frontal Dementia due to strokes about 2yrs ago. He was put immediately on Seroquel (would not sleep) and exelon patch, plust citalopram. He is now enrolled in a national program called "Pace Select Care", under the auspices of Hope Hospice. He goes to day care 4x a wk. We had to give up our doctors and only use "Geriatric" doctors on staff. Saved running to drs offices all the time. He also is a kidney transplant 13yrs, diabetic, hbp. After much concern on my part, the dr convinced me to follow their plan. They have eliminated the 'Megace, amlodipine, exelon patch, seroquel, citalopram and cholestrol med'. Within the last 10 days it has been too good to be true. This has all been done at a slow pace since April. Still does not like going to day care, but we keep telling him he is going to work there and that everytime he goes, they give us money to pay our bills. For as long as this works its a plus. (really true because he is now on Medicaid) He is more talkative, questioned lots of things that he had forgotten before, watches TV, whether he know what he is reading, he is picking up magazines that I leave all around the house and is trying to read.(He used to read 2 books a wk) He leaves the house about 9:45am and returns with 'Hope' bus about 4:45pm. He does not like the amt of time at the center, but he is socializing, playing cards, and being around lots of people, many like him, many worse. Problem is I miss him terribly and cant get my kids to understand that I think 3days would be sufficient. We work with a team of 12 people whenever there is a problem to work it out. My kids want me to volunteer, find new friends...I am 81 he is 87 and married 61yrs. We have done all that, volunteered for years, hospital,ronald mcdonald house, church, etc. and I really dont find the need for that. Cannot seem to get a group of 'ladies' my age to play cards during the day, all want to play at night (widows)so that lets me out. We do play cards every Sunday with friends and he does OK, not as good as he did before, but OK. I have put in an application at our local library to volunteer, but still have not heard. I am probably to old for them, but I will wait to hear.
When I read all the stories above it is amazing how each dh or dw or dm or df is affected by taking meds, removing meds. Everyone is so different and it took me a very long time to agree. They will never change his immune suppresant drugs, hbp or insulin. So good luck to everyone. Want to check it out just Google 'National Pace Program'. Not in every state, but most states have other programs to help.

Lotsa questionsSmiler
So he improved due to med changes? Did he start daycare at the same time? How long was he off each med before the improvement? In what order were the meds stopped? Was he taking amlodipine for blood pressure? Is his blood presure ok now?
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: jellybeans

quote:
Originally posted by Patty Cake:
I have been on full dose of Namenda since Tuesday and full dose of Exelon.. I do not have an appetite. I learned if I put a paper on the fridge and write each time I eat, I realize if I have eaten or not. Now I do not have the other side effects of gastro problems. So I am very fortunate. I am wondering if I should go to Aricept instead of Exelon.. The two pill and patch seem to do okay so far. I am 54 and very recently told the Pet Scan told me. So I have what my dad had. Not the cancer others had in the family. I am happy about that... Red Face)

Exelon patch or pill? the patch USUALLY has less side effects than a pill in this class of meds but everyone is different
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: deb sue

According to the dates on the other replies,,,,,mine is a little late but I wanted to respond. My father-in-law lives with us and is in the 5th to 6th stage of alzheimers and was put on Exelon soon after his diagnosis. He was on the medication for approx. 6 mos. and he began losing weight and couldn't eat which resulted in a trip to the hospital. They ran tests and discovered his liver was not functioning properly due to the exelon. We took him off the medication and he recovered completely (physically that is). Just thought you would like to know.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: jellybeans

quote:
Originally posted by Ed W.:
Glad to see some have found benefits from Exelon. Unfortunately, my 86 year old mom with mild/moderate Alzheimer's did not tolerate it well at all. Within the first week of the patch she had to be rushed to the emergency room due to upset stomach and frequent vomiting. Hope it continues to work well for all those using it.

Ed, you might want to join us on the caregivers section above. We get a lot more traffic there
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Crazy Blonde

Actually, I had to take my husband off the Exelon and had him take Aricept along with the Namenda instead. Funny cause when he was first diagnosed, they put him on Aricept alone and he had plenty of side effects but can't even remember them all, but enough to then try the Namenda. Then as things progressed, they added the Exelon and it seemed it got worse quickly. So back to the dr. to get him off the Exelon and put him on the Aricept along with the Namenda and it has dramatically made a difference. The progression seems to have slowed and he actually seemed better than before. I do know that stomach problems are possible with the Aricept but his dr. has him on Omeprazole since his last blood test showed him slightly anemic and figured it was from his stomach since all else seemed okay. Will know in a month if it is working. But truly, the difference with him on the Aricept is so much better. Hope that helps.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: ChristineC

ff the Exelon. It made her weak, dizzy, loss of appetite and other side effects. This was not living. I kmow it slows down the Alzheimers, but since it doesn't stop it, I rather have her feeling well before the Alzheimers gets worse. Thanks again for your reply and support. By the way, have you seen an improvement since your Mom was on Exelon? My Dr tells me it works great.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Twice Blessed

Christine, my husband was on it for several years with no problems. I would do whatever the doctor advises.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Ed W.

Glad to see some have found benefits from Exelon. Unfortunately, my 86 year old mom with mild/moderate Alzheimer's did not tolerate it well at all. Within the first week of the patch she had to be rushed to the emergency room due to upset stomach and frequent vomiting. Hope it continues to work well for all those using it.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Mama's Friend

Hi Christine,
My mother has been on Exelon for 2 1/2 years, on Namenda since last November.
It may be it affects your Mom differently or it may be that it is unrelated...make sure you talk to her Dr.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: judyann

Hi,
My husband is on Exelon and he also had a lot of nausea and loss of appetite when he first started. They recommend taking it after a substantial meal - they told us you have to eat a good meal (not just toast or something simple) before taking it. He lost about 25 pounds before he started getting over the nausea, but eventually he did get over the side effects and then began gaining the weight back and eating good again. I don't remember him complaining about dizziness but he did complain about his head feeling funny. The side effects do eventually go away but they increased the dosage so slowly that it took quite a while (a couple of months for him).
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: mjansen

Hi, I see my post is a little late but wanted you to know that my husband has been on Exelon for about 2 months, with no side effects. He eats very well; has a good appetite. It has helped a lot with the hallucinations. Good luck with your mom. My prayers are with you.
Marcia
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Patty Cake

I have been on full dose of Namenda since Tuesday and full dose of Exelon.. I do not have an appetite. I learned if I put a paper on the fridge and write each time I eat, I realize if I have eaten or not. Now I do not have the other side effects of gastro problems. So I am very fortunate. I am wondering if I should go to Aricept instead of Exelon.. The two pill and patch seem to do okay so far. I am 54 and very recently told the Pet Scan told me. So I have what my dad had. Not the cancer others had in the family. I am happy about that... Red Face)
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: "Roses"

It is amazing to read all the different stories that come from one discussion. My dh was diagnosed with Frontal Dementia due to strokes about 2yrs ago. He was put immediately on Seroquel (would not sleep) and exelon patch, plust citalopram. He is now enrolled in a national program called "Pace Select Care", under the auspices of Hope Hospice. He goes to day care 4x a wk. We had to give up our doctors and only use "Geriatric" doctors on staff. Saved running to drs offices all the time. He also is a kidney transplant 13yrs, diabetic, hbp. After much concern on my part, the dr convinced me to follow their plan. They have eliminated the 'Megace, amlodipine, exelon patch, seroquel, citalopram and cholestrol med'. Within the last 10 days it has been too good to be true. This has all been done at a slow pace since April. Still does not like going to day care, but we keep telling him he is going to work there and that everytime he goes, they give us money to pay our bills. For as long as this works its a plus. (really true because he is now on Medicaid) He is more talkative, questioned lots of things that he had forgotten before, watches TV, whether he know what he is reading, he is picking up magazines that I leave all around the house and is trying to read.(He used to read 2 books a wk) He leaves the house about 9:45am and returns with 'Hope' bus about 4:45pm. He does not like the amt of time at the center, but he is socializing, playing cards, and being around lots of people, many like him, many worse. Problem is I miss him terribly and cant get my kids to understand that I think 3days would be sufficient. We work with a team of 12 people whenever there is a problem to work it out. My kids want me to volunteer, find new friends...I am 81 he is 87 and married 61yrs. We have done all that, volunteered for years, hospital,ronald mcdonald house, church, etc. and I really dont find the need for that. Cannot seem to get a group of 'ladies' my age to play cards during the day, all want to play at night (widows)so that lets me out. We do play cards every Sunday with friends and he does OK, not as good as he did before, but OK. I have put in an application at our local library to volunteer, but still have not heard. I am probably to old for them, but I will wait to hear.
When I read all the stories above it is amazing how each dh or dw or dm or df is affected by taking meds, removing meds. Everyone is so different and it took me a very long time to agree. They will never change his immune suppresant drugs, hbp or insulin. So good luck to everyone. Want to check it out just Google 'National Pace Program'. Not in every state, but most states have other programs to help.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Johanna C.

Just a note to let everyone know this thread was initiated back in January 2006.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Russ B.

I am a patient, diagnosed in October 2009 with Alzheimers. I am on the Exelon patch (9.5), Namenda (10.5) and Cerefolin ( 5.6 mg of L-methlfolate / 2mg methylcobalamin / 600 mg N-acetylcysteine with no issues. A little red spot when I remove the patch but it is gone by the end of the day and I use a new position every day. This combination has been very effective for me, with no side effects. I take a full course of vitamins, eat foods across the rainbow ( all the colors) and get plenty of exercise every day.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: J MacDonald

my husband has been on exelon for a year. I too sometimes wonder if his appetite is from medicine or just from the disease or from taking so much medicine-as he takes bloodpressure med. also. I understand your question j macdonald
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: RhondaJill

my husband had been on Exelon for a year, started with the 5 patch and about six months ago went to 10. No side effects. Recently started Exiba as well.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Betsy

My mom has been on Exelon for a few years. This is in addition to Namenda. My Dad always said the two are wonder drugs - they have really slowed my Mom's AD. No, it doesn't cure it, but for us it has slowed the disease considerably.
I hope your Mom is feeling better soon.

~Betsy
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: SnowyLynne

My Neuro tried me on Namenda I could not tolerate it at all........
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: mama dee

My Mom is in late stage. She has been on excelon for about 5 years. Have not had any problems. Sorry.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: ChristineC

thanks for your response. I took my Mom off the Exelon. She was just in a daze. She seems to be back to normal (as normal as you can be with Alzheimers) but her blood pressure keeps droping for no apparent reason. WE are going to see a Cardiologist as no one else can seem to find out what is going on. It probably wasn't the Exelon but now I've stopped it and am afraid to go back. Thanks
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: neloyner

My mother jas been on exelon and namenda since May- have not had problems
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: Nickie

Victoria: I realize full well that it has been almost two years since you posted this reply, but I had to come here to thank you. I followed the link to www.lbda.org and lightbulbs started going off all over the place once I read the description of the disease. I'd be willing to bet my next paycheck that this is what my 86-year old mother has. I have set up an appointment for her with the head of a Johns Hopkins memory clinic in July. Meanwhile, my relationship with my mother has improved dramatically since I have a better understanding of what she is going through. Thank you again.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: RhondaJill

whoops, typo there. It is Ebixa. Used for the symptomatic treatment of patients with moderate to severe dementia of the Alzheimer's type It is memantine hydrochloride. RhondaJill
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: jll

when my mother was diagnosed with AD she was put on execlon and she lost her appitite too so we switched to aricipt with taking namanda at the same time and that has helped with her appitite. she was on the execlon for only 6 days when i noticed her appitite was decreasing and she was rapidly loosing weight after almost 2 weeks. i know that everybody handles different scripts differently but with my moms case the aricipt worked better for that side effects. i hope that helps.
Anonymous
Posted: Friday, January 6, 2012 1:06 AM
Originally posted by: A.ALLEN

Would you explain the DRUG EXIBA? NEVER heard of it,is it used in the combination? THANKS for informing me-