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NEW 13.3 mg. Exelon Patch
SandyHalperin
Posted: Wednesday, September 12, 2012 12:02 PM
Joined: 4/29/2012
Posts: 76


I have been on the 9.5 mg. Exelon 24-hour patch for well over a year, in combination with my taking 10 mg. of Namenda twice a day. I will be starting on the new 13.3 mg Exelon patch in the next week or so, and I wonder if anybody else has used this 13.3 mg. Exelon patch dosage and what their experiences have been? 

 

Thanks, 

Sandy


Geegee
Posted: Wednesday, September 12, 2012 12:41 PM
Joined: 11/29/2011
Posts: 514


Sandy,

I'm on the 9.5 mg patch for AD and don't know anything about the 13mg.  Now I'll make it a point to read up about it's use.


 Will it be applied daily like the 9.5?  I'm also wondering why you are being switched to a higher dose.  Did you have new or changing symptoms that caused your dr. to prescribe it?


Other members will respond soon.  I think the majority on the 9.5 Exelon dosage.  Anxious to hear...


SandyHalperin
Posted: Wednesday, September 12, 2012 7:26 PM
Joined: 4/29/2012
Posts: 76


Thanks for responding >>>

 

From what I understand, there has been some recent research published on the use of a 13.3 mg. daily Exelon patch. Because of my continuing and perhaps exacerbating cognitive symptoms, my physician (neurologist) will be trying this increased dosage for a period of time to see if it of any benefit to me. My use of the Exelon patch, in combination with the Namenda tabs, has been of benefit to me... and that comes from my family members, in addition to the way that I have felt over the past year plus. It is important for patients to know that they must dose up over time (months) to be able to use the higher 13.3 mg Exelon patch.

 


Myriam
Posted: Wednesday, September 12, 2012 10:59 PM
Joined: 12/6/2011
Posts: 3326


Here is the study info on the 13.3 patch:


http://www.prnewswire.com/news-releases/higher-dose-of-novartis-drug-exelon-patch-approved-by-fda-for-patients-with-mild-to-moderate-alzheimers-disease-168422476.html


Sandy, let me know how it works for you. Am thinking about increasing the dosage of Namenda, too, at some point.


SandyHalperin
Posted: Thursday, September 13, 2012 1:17 PM
Joined: 4/29/2012
Posts: 76


Myriam,

Thanks for posting the study. I will let you know how I do on it, once I begin in the coming weeks. What dosage of Namenda are you on? 


Take care,
Sandy


Myriam
Posted: Thursday, September 13, 2012 7:00 PM
Joined: 12/6/2011
Posts: 3326


SandyHalperin wrote:

I will let you know how I do on it, once I begin in the coming weeks. What dosage of Namenda are you on? 

 

 
 
10 mg. Met with my primary care doc today and she said she would prescribe the higher doses of Namenda and Exelon. I told her I wanted to do a little more research first. She said there are side effects with the higher dosages. 

 
I'm still between stages 2 and 3. Am spending about 60 percent of the time in stage 2, but it's speeding up into stage 3.
 

Iris L.
Posted: Thursday, September 13, 2012 11:06 PM
Joined: 12/15/2011
Posts: 16116


I've taken 20 mg Namenda for three years and I have no bad side effects.  I gradually advanced from 5mg to 10mg to 15mg to 20mg in weekly increases.

Iris L.

Myriam
Posted: Thursday, September 13, 2012 11:49 PM
Joined: 12/6/2011
Posts: 3326


Thanks, Iris.
nomemo
Posted: Friday, September 14, 2012 1:00 AM
Joined: 3/21/2012
Posts: 439


i take 10 mg of namenda 2x/day and 10 mg of aricept 1x/day.  have been for a couple of years....no noticeable side effects, but also don't know if i notice a difference or not.  also read they are contraindicated for people with FTD, which i have.  will be talking with my neurologist about this next friday at my next appt.

 

had my annual cognitive eval by speech therapist (not neuropsych eval).  don't have formal report yet, not until next week, but i know some scores have decreased.  i think auditory processing may have stayed same as last year.  will let you know next week.


mish
Posted: Friday, September 14, 2012 8:37 AM
Joined: 6/21/2012
Posts: 439


I have been on the patch the smallest dose for 2 months now, no side affects, should I increase? thoughts/

also when/if do you know if you should add nameda?

thanks for helping me.

you guys always do.


Iris L.
Posted: Friday, September 14, 2012 10:46 AM
Joined: 12/15/2011
Posts: 16116


Mish, my neurologist prescribed Exelon patch at 4.6 mg for one month, then increased it to the current dosage of 9.5 mg.daily.

A couple of months later, a geriatrician prescribed Namenda in a dose-pak that increased weekly from 5 mg to 20 mg. 

I had some side effects on beginning Exelon patch for a few days but none at the higher dosage and no side effects now.

I've been on both Exelon patch and Namenda for three years.

My diagnosis is cognitive impairment nos and lupus, not EOAD.

The neurologist offered me Axona which I declined to take at the time.

Talk to your neurologist about the goals for your treatment plan.

Personally, I feel comfortable that I am receiving the maximum pharmacologic treatment that is treating my symptoms.  I am pleased with my treatment plan for cognition.

I also take an antidepressant.  I don't think it is helping my cognition, but it is controlling my appetite and I am losing weight.

Iris L.

mish
Posted: Saturday, September 15, 2012 9:19 AM
Joined: 6/21/2012
Posts: 439


thank you so much, I would like to ask more questions if that is ok.

I want to go up on the patch but I was thinking (sorry if this sounds elementary) but if I was clearer from the patch on the small dose, should I wait to go up on the dose  until i get worse so my body wont be used to it at higher doses?  I hope that was clear? also what is namenda  supposed to do for your thoughts? What sx's does it help?

Thank you. i will call my MD on monday. He is great just not a people person at all. Small pickings here. I think I would rather have a good MD that knows what he is doing and has helped me than a real friendly  MD that knows nada. I hope to relocate to SC in the future, so hopefully there are good MD's there with a personality! 

Sorry for going on . Have a nice day!


Iris L.
Posted: Saturday, September 15, 2012 5:30 PM
Joined: 12/15/2011
Posts: 16116


Mish, ask all the questions you like.

Neither Exelon patch nor Namenda treat Alzheimer's disease.  What they do is help the normal brain cells function better.  They work on the neurotransmitters that transmit signals between brain cells. 

Exelon patch works on acetylcholine.  Namenda works on glutamate, which is associated with learning and memory.  Namenda works to normalize glutamate activity.

The geriatrician described Namenda as a brain "tonic", helping the brain to function better.

Studies have shown that using two therapies--stabilizing glutamate plus stabilizing acetylcholine--are better than using only one therapy.

The question you asked should be asked of your neurologist.  It probably is best to try optimal therapy as soon as possible after diagnosis to enhance functioning and to have a chance to delay the development of new symptoms. 

Waiting for more symptoms to arrive probably decreases the chance that the medication will have as much beneficial effect.

With any medication, you have to balance the benefit versus the risk of side effects.  If there are no side effects, you can see if you get more benefit from the higher therapeutic dosage.

Keep a record of the symptoms you have now and how you are responding.  Monitor daily activities, behavior and mood, and cognition and memory.""

Remember that the goal of treatment for Early Stage AD is to remain in the early stages for as long as possible.

Iris L.


mish
Posted: Sunday, September 16, 2012 8:58 AM
Joined: 6/21/2012
Posts: 439


Iris- u are awesome as usual! thank you so much! I will call my MD tomm.  So what types of side affects are people experiencing if any?

I can honestly say this board is the best, I could not ask for better, more caring people to share this new chapter of my life with. 

Thank you again.

Mish


mish
Posted: Tuesday, September 18, 2012 7:58 AM
Joined: 6/21/2012
Posts: 439


I spoke with MD yesterday and he wont put be on namenda because I don't have the usual type of Alz. and if anything it could make me worse.  However, he did say he would increase the patch. Problem is I just bought a box of new patches. I know the pharmacy wont take them back even though the box isn't open. I wonder if I can put 2 patches on to equal the higher patch? thoughts? thanks.
Iris L.
Posted: Tuesday, September 18, 2012 11:46 AM
Joined: 12/15/2011
Posts: 16116


Mish, this is the question you should ask the doctor.  Did he give you a prescription for the 9.5 mg patches? 

Perhaps you could continue the lower dose for one more month then advance to the higher dose. 

But you should not double up the patches without discussing with the doctor.  I believe the instruction specifically warn against doubling the patches.

Iris L.

Myriam
Posted: Tuesday, September 18, 2012 1:02 PM
Joined: 12/6/2011
Posts: 3326


Iris is right, Mish. Please don't double up on the patches! Just finish up the patches you have. I'm in the same boat. I've got a couple of weeks left of my lower dosage patches, then starting the higher dosage.
mish
Posted: Wednesday, September 19, 2012 10:29 AM
Joined: 6/21/2012
Posts: 439


I am prescribed the higher dose now and thanks to a very understanding woman at the pharmacy and due to the fact the  the other box was unopened i am able to switch the dosage and therefore not have to pay more. I am so thankful to you all for your concern, it really means alot to me.  I am lucky i have this support.
Iris L.
Posted: Wednesday, September 19, 2012 11:43 AM
Joined: 12/15/2011
Posts: 16116


That's good news, Mish.  Let us know what improvements you notice in the higher dosage. 

When I increased to the higher dosage of Exelon patch, other people began to tell me they noticed I was speaking better with less hesitation and finding my words easier. 

That was confirmation for me that my results were true because I had not told anyone I was on any medication. 

Iris L.

Lisa428
Posted: Wednesday, September 26, 2012 11:06 PM
Joined: 12/5/2011
Posts: 795


Sandy,

 

Good Luck with your increase of your Exelon patch.  It's very exciting!

 

Please keep a journal and keep us posted.

 

I'm in a clinical drug trial study right now.  I don't think I can change my patch at this time.

 

I was diagnosed @53.  I was a caregiver to my Mom who suffered with AD/Vascular dementia.  My Mom died 2 years ago.  I am now 58.

 

I know this is a difficult road for you.  I hope your husband is loving, patient and supportive.

 

Good Luck and Take care,

Lisa


Lisa428
Posted: Wednesday, September 26, 2012 11:12 PM
Joined: 12/5/2011
Posts: 795


Hi Mish,

 

Glad to hear you doctor increased your patch.  I hope it works well for you.

 

Please, keep us posted.  You may want to keep a journal to help you remember.

 

Good Luck.

 

Peace and Hope,

Lisa


Myriam
Posted: Thursday, September 27, 2012 12:28 AM
Joined: 12/6/2011
Posts: 3326


My doc ordered the 13.5 mg Exelon Patch. It hasn't been released for shipment yet by the manufacturer. My pharmacist said the manufacturer won't be shipping them for another three weeks from now, but he doubts it will get to his pharmacy in that time believing the demand will be great, which will cause the delay. I'll let you know when it arrives and whether I have a negative or positive reaction.
mish
Posted: Thursday, September 27, 2012 7:16 AM
Joined: 6/21/2012
Posts: 439


I have and always had a hard time with journaling. Even in school when I "had" to.  I really should try again, I always say I will journal and then i don't, i have a calander that I use sometimes to track sleep. I actually use my family as my journal, I know and they can tell when i am having a good day or not. The only issue so far with the patch  is it is bigger and I have a hard time finding spots. It also leave those stupid circles. Sometimes it is hard for them to stick. Oh well, if that is the worse then I am grateful!

thank you.


Iris L.
Posted: Thursday, September 27, 2012 10:49 AM
Joined: 12/15/2011
Posts: 16116


I use baby oil to remove the glue left by the patches.

Iris L.

mish
Posted: Friday, September 28, 2012 6:42 AM
Joined: 6/21/2012
Posts: 439


I really dont have that hard time with the mark from the adhesive itself, it is that the skin itself has a circle mark left even with out the adhesive. Hope that makes sense? you should have seen me after spray tanning, I had about 6 circle marks that were different in color. it was quite amusing. Also, since the patch is bigger, I am finding it harder to find different spots, I read the upper body shows somewhat more affectiveness in placement, but i am only so big or small whichever way you want to look at it.  

Thanks Iris again! lol


Iris L.
Posted: Friday, September 28, 2012 2:30 PM
Joined: 12/15/2011
Posts: 16116


You've got EOAD and you're still interested in spray tanning? 

Way to go, mish!  -

You exemplify the new face of EOAD--still living your life the way you want!

Iris L.

Myriam
Posted: Friday, September 28, 2012 8:34 PM
Joined: 12/6/2011
Posts: 3326


Yaeee, Mish!!!
mish
Posted: Sunday, September 30, 2012 8:42 AM
Joined: 6/21/2012
Posts: 439


lol-  sometimes its better to look good than feel good!

its funny that you said about the "new" face of this, that is what the woman from the alz. ass. in the state said. That is one of the things I want to go out and talk about, that you can look like anything and still have it. I start tuesday volunteering and meeting everyone.


Iris L.
Posted: Sunday, September 30, 2012 12:29 PM
Joined: 12/15/2011
Posts: 16116


I once heard on a tv commercial that looking good is 80% of feeling good.  They might have a point there.

Good for you in starting your volunteer activities with the Alz Assoc, mish.  Let us know how it works out.

Iris L.

SandyHalperin
Posted: Thursday, October 11, 2012 6:53 AM
Joined: 4/29/2012
Posts: 76


I brought my 13.3 mg RX to the pharmacy yesterday and I will see how long it takes for me to get it --- and will keep you informed.

Thanks!
Sandy


SandyHalperin
Posted: Thursday, October 11, 2012 4:29 PM
Joined: 4/29/2012
Posts: 76


I just picked up the Exelon 13.3 mg patches at the pharmacy and will begin using them in a few days - and will keep you informed... 

Take care,

Sandy


SandyHalperin
Posted: Thursday, October 11, 2012 4:31 PM
Joined: 4/29/2012
Posts: 76


Myriam - Hi and I hope all is well with you. I picked up the 13.3 mg patches this afternoon at the pharmacy and will let you know how I do on them. You can see if your pharmacy has them available yet. Best regards, Sandy
bela
Posted: Tuesday, October 23, 2012 12:24 AM
Joined: 12/15/2011
Posts: 4105


Hi, 

I am a caregiver and I've been talking to my mother's neurologist...she is starting to tick me off.  Anyway the dr  did not mention the 13.5 patch but i want my mom to try it,.. a bit nervous about starting it.

Can we swap notes once my mom and you have started it.  Also, do you know why your doctor prescribed 10 mg of namenda 2x a day whereas my mom is only taking it 1x a day.  Can you find out.  I might want to increase mom's dosage on that too.

Thanks for sharing.

 


John50
Posted: Tuesday, October 23, 2012 2:34 AM
Joined: 3/14/2012
Posts: 140


One of the things that often isn't talked about by most people because I think they aren't aware but I have listened to my neurologist and another professional give presentations where they talk about the drugs like aricept, namenda and exelon. They all seem to have a bell curve as far as helping with symptoms. They see a gradual sweep up as in a bell in improvements of symptoms but then it starts down on the other side dropping off in effectiveness so unfortunately these drugs have their best effect on the symptoms for a limited time and then drop off. I don't say this to discourage anyone but to understand how they know they work explains why sometimes after an extended period of time if seems like you might be progressing quicker when in actuality it could be the medications just aren't having as much effect on the symptoms anymore. Just an idea to keep in mind.
bela
Posted: Tuesday, October 23, 2012 3:17 AM
Joined: 12/15/2011
Posts: 4105


My mom's patch didn't always stick so well esp on damp skin ie after a bath or in the summer with a little body moisture..

sometimes the action of putting on or taking off clothes is enough to dis lodge the patch..

therefore, i taped the darn thing to mom use a criss cross pattern which involved actually 2 good length pieces of tape.  sometimes i used good old package wrapping tape and sometimes white medical tape.  

It worked.  Patches weren't coming off anymore.  Sadly, mom had circles and tape marks but she was/is a trooper.