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anyone else having a problem with getting the patch?
mish
Posted: Tuesday, August 6, 2013 12:42 PM
Joined: 6/21/2012
Posts: 439


hi everyone, since getting back, I was told by pharmacy and then by the company that the patch in all the strengths have been back ordered and the date of release is unknown. I had to be put on the oral kind. has anyone found this too>  sounds weird  but that is what the company and  pharmacy and MD said.   I didn't know if this happened to anyone else?

thanks!


Myriam
Posted: Tuesday, August 6, 2013 2:08 PM
Joined: 12/6/2011
Posts: 3326


I in my neighborhood, there are 2 pharmacies.  One carries the patch (just got a new box 3 days ago) and the other pharmacy does not carry it.  If I were you, I would call other pharmacies.  I suspect pharmacies located in hospitals are more likely to carry the patch than most (for persons whom have AD and are hospitalized), so call the pharmacy in the hospital(s) near you, too.
Iris L.
Posted: Tuesday, August 6, 2013 4:35 PM
Joined: 12/15/2011
Posts: 18509


I just picked up mine last week.  A while ago I was told the same thing, that I would have to wait indefinitely because the manufacturer was out of supply.  I posted here and was told there was no Exelon supply shortage.  The pharmacy just had to order from their distributer.  Because it was a weekend I had to wait until Monday. 

I  shouldn't have had to wait.  They know I have a monthly prescription--they should have been ready.  I doubt that I am their only customer on Exelon patch. 

Do patients of other diseases get told this tale?  We can't handle this type of scare tactic.

Iris L. 

mish
Posted: Wednesday, August 7, 2013 7:51 AM
Joined: 6/21/2012
Posts: 439


the company itself said it was "backordered also". with date unknown.

  so who knows. 


Iris L.
Posted: Wednesday, August 7, 2013 10:56 AM
Joined: 12/15/2011
Posts: 18509


That is troubling.  I don't want to be without my daily Exelon patch.  Very troubling.

Iris L.

Myriam
Posted: Wednesday, August 7, 2013 1:47 PM
Joined: 12/6/2011
Posts: 3326


Iris, I have used OptumRX, a mail order pharmacy, which allows me to order up to 3 months worth of the Exelon Patch.  I reorder 3 to 4 weeks before I run out, but I don't do it all of the time because paying my co-pay for 3 months of prescriptions becomes financially difficult sometimes.
Iris L.
Posted: Wednesday, August 7, 2013 5:38 PM
Joined: 12/15/2011
Posts: 18509


Myriam, I'm not currently having difficulty, Mish is.  I haven't heard anything about a shortage of Exelon patch here in California. 

Iris L.

mish
Posted: Thursday, August 8, 2013 12:39 PM
Joined: 6/21/2012
Posts: 439


hey put me on the pill, so not happy about this. I will give it a try. has anyone heard anything about the pill?

thanks for your help.


Myriam
Posted: Thursday, August 8, 2013 12:51 PM
Joined: 12/6/2011
Posts: 3326


Mish, do you mean Aricept?  It's a pill.  The Exelon patch is the same type of medicine.  Doctors usually suggest the Exelon patch for those patients whom have gastrointestinal problems with Aricept.
Iris L.
Posted: Thursday, August 8, 2013 1:08 PM
Joined: 12/15/2011
Posts: 18509


Myriam, I think Mish means the doctor gave her the Exelon pill instead of Exelon patch while the patch is unavailable to her.

A pharmacist just joined the Caregivers board, and I asked if he knew anything about this shortage of Exelon, and if so, could he post on this thread. I hope he does respond and can give us some information.

Iris L.

Geegee
Posted: Friday, August 9, 2013 8:45 AM
Joined: 11/29/2011
Posts: 514


Mish, I am sorry you are experiencing this problem.  Yes, there is Exelon in pill form.  


I haven't had a problem with where I live in Florida.  Iris, I am hoping the pharmacist can update us on the availability.


mish
Posted: Saturday, August 10, 2013 7:47 AM
Joined: 6/21/2012
Posts: 439


yes  my md switched me to the Exelon pill and it stinks, was sick all yesterday and from the feel of it today isn't going to be much better. I am sick of my bathroom!

the pharmacy said they have the 13 mg of the patch, well if I still feel like crap one more day then I am calling this md and asking him for the  bigger dose. I mean I was on the 9.5  is there that big of a difference?  I  am seriously  disliking this pill. now I know why they put me on the patch anyway. yuck! to put it midly and nicely. Do you think it would be that big of a deal for the md to put me up to the 13 mg patch? sorry to keep bothering you put I was very cool with the patch and now I feel like I am starting all over.  I want my patch back! 


Iris L.
Posted: Saturday, August 10, 2013 3:11 PM
Joined: 12/15/2011
Posts: 18509


Don't apologize for using the board, mish, this is what we're here for.  We're the only ones who are interested in what's going on with us.

I'm sorry you're having so much trouble with the oral Exelon.  That's why the patch was formulated, to avoid the gastrointestinal upset from the oral dosage.

Now that you mention the 13 mg patch something came to mind.  I wonder if the manufacturer is deliberatly withholding the 9.5 patch in order to force people to go to the 13 mg patch?  I hope this is not the case, because this would be bad.

I had hoped the new pharmacist member could shed some light on this issue, but I haven't seen him back on the boards.

Keep calling around your local community or have your pharmacist keep calling.  I would be very upset if I didn't have access to my patch.

Iris L.




mish
Posted: Sunday, August 11, 2013 8:41 AM
Joined: 6/21/2012
Posts: 439


thanks iris- I stopped the med altogether, I couldn't take the GI upset anymore. It is a gorgeous weekend and I am feeling like crap. a wasted weekend due to a company doing whatever they feel like. I was fine the way things were. I hope they aren't doing their little marketing manipulation that is so not cool.

I just hope my MD ok's the 13 mg patch. who knows with him.

thanks again!


Iris L.
Posted: Sunday, August 11, 2013 1:28 PM
Joined: 12/15/2011
Posts: 18509


I think Myriam and a few others have advanced to the 13 mg patch with no trouble.

I hope it works for you.

Iris L.

mish
Posted: Monday, August 12, 2013 9:12 AM
Joined: 6/21/2012
Posts: 439


Iris- unfort.  u were right. the  pharm. disclosed that they will be d/c the 9.5  and going with 13 in the future.  I think it stinks they are not being honest with consumers  and saying they are "back logged" -I mean really , just be honest and say  they are weaning out the 9.5's and keeping the 13.   I really hope I was told wrong info but it really doesn't look like it.
Geegee
Posted: Monday, August 12, 2013 9:23 AM
Joined: 11/29/2011
Posts: 514


Mish, we are here to help each other.  There was a time when I was on Aricept and I spent 75% of my time in the bathroom.  Not nice to talk about, but true.  I lost so much weight (which wasn't all that bad) but it was a hard way to do it.

I was close to wearing depends when it was so bad.  Instead, I stayed home.  That's not a good way to live at all!  I also lived on Immodium AD until I found out that it was negative on my cognition. 

Make sure your dr. gets you back on a patch, even if it is the 13mg, ASAP.  They say that if we stop, we will not regain what we lose while we are off our meds.

Also, Sounds like you  may need a new dr. ASAP. 


Iris L.
Posted: Monday, August 12, 2013 1:56 PM
Joined: 12/15/2011
Posts: 18509


I'm glad you finally got some answers, Mish.  You're right, they should have been honest from the beginning.

I think it's too much to begin at the 4.6 patch and then jump to the 13 mg patch.  Also, how much does the 13 mg patch cost?  Will the cost be higher than for the 9.5 mg patch?

I'm surprised the doctor wasn't aware of the discontinuing of the 9.5 mg patch.

Iris L.

Myriam
Posted: Monday, August 12, 2013 8:32 PM
Joined: 12/6/2011
Posts: 3326


Actually, the Exelon Patch comes in 3 different dosages (4.6, 9.5 and 13.3) . None are being discontinued, unless your local pharmacy is choosing not to carry a particular dosage.  


Here is the website for the Exelon Patch: 

 

http://www.exelonpatch.com/info/How_the_Exelon_Patch_Can_Help/exelon-patch-faqs.jsp 

 

 


mish
Posted: Tuesday, August 13, 2013 10:15 AM
Joined: 6/21/2012
Posts: 439


I  found a pharmacy that had one box left. so I started today again. yeah! lets see what the future holds re. the 9.5 I am  just happy I have a months worth now!

thank you all for your support.

 


Myriam
Posted: Tuesday, August 13, 2013 1:43 PM
Joined: 12/6/2011
Posts: 3326


How wonderful, Mish.  When you get the chance, you might want to call that pharmacy to make sure they keep the Patch in stock for you.
Iris L.
Posted: Tuesday, August 13, 2013 1:56 PM
Joined: 12/15/2011
Posts: 18509


Good for you, Mish!  You aren't the only one using the patch.  Make sure they keep it in stock for you.

Iris L.

mish
Posted: Wednesday, August 14, 2013 7:09 AM
Joined: 6/21/2012
Posts: 439


now, yesterday afternoon the rn or whoever  called from my md's office stating that the  dr. didn't want to put me on  13 mg of the patch right now because he thinks it would be too strong at this time. I told her I found a place that had 1 box left of 9.5 she asked where else has 9.5 I told her I didn't know, it seemed that no  one around me had  9.5 and she asked again, I was like do I have esp? I told her I don't know and what the company said  so she said she would make calls and talk to the md and get back to me.  I was like you do whatever you need to do before the month is out just get me the patch for next month! lol

thank you all so much for being there (again) for me, you are so great!  I missed you when I was gone. glad to be back. xoxox-mish


Iris L.
Posted: Wednesday, August 14, 2013 1:19 PM
Joined: 12/15/2011
Posts: 18509


Mish, I'm still waiting to hear more about your trip.  I know you got disoriented a few times.  I'm planning a big trip in 2014 with a big group.  Do you have any tips for me? 

Thanks for alerting us to the availabilty of Exelon patch.  I'm going to keep an eye on this.  I need my patches!

Iris L.

Carrie Ellen
Posted: Thursday, August 15, 2013 12:37 AM
Joined: 6/29/2013
Posts: 4


I just started the starter dose this week.  Had not problem getting that strength.  I was also able to get it as a free 30day trail through a voucher from the company.  I hope there is a suppy of the middle strength when I move up.  The patch will be so much easier for me.
mish
Posted: Saturday, August 17, 2013 3:59 PM
Joined: 6/21/2012
Posts: 439


update: md wont put me on 13 mg because it is too strong and most pharmacies don't have 9.5 so now or next month  I will be on 2- 4.5 patches until company starts with  the 9.5 and I have to go to another pharmacy  for the 4.5 's because the cvs's around me have nada.

so that is where I stand now.

crazy? yup in a huge way!!!!!!!!!!!!!!!!

re. trip it was amazing!

I actually had the opportunity of a lifetime to be in the Vatican to see and witness  Pope Francis speak and do his blessing for the festival of peter and paul.

it was such an amazing experience. I don't know what he said but the feelings that were coming over me were indescribable.


Myriam
Posted: Saturday, August 17, 2013 5:09 PM
Joined: 12/6/2011
Posts: 3326


How awesome to be in Rome and the Vatican!!!!!
Iris L.
Posted: Sunday, August 18, 2013 3:23 AM
Joined: 12/15/2011
Posts: 18509


Mish, what you're having to go throught with two 4.6 patches does sound crazy.  In all my years of practicing pediatrics I never heard of patching medications together to get the desired dosage.  Perhaps this is more common in adult medicine.

What will happen in September?  It's only a few days away.  If I don't get my patch I will be very unhappy.

On the other subject, I will be visiting Rome and Israel next year.  My group will also visit the Vatican.  I'm so looking forward to it.  This will be a Christian tour so we are going to Christian and Biblical sites.

Mish, I sent you an email via this inbox.

Iris L.


mish
Posted: Sunday, August 18, 2013 2:08 PM
Joined: 6/21/2012
Posts: 439


I loved Mykonos and santorini. but naples was my favorite.

going back to Tuscany or Mykonos next year, renting a villa.

Turkey was nice but too many people  trying to sell you stuff. it got annoying.

but seeing the Pope was def. the highlight.

Iris I will do all I can to help you with the ins and outs as much as I can.


Iris L.
Posted: Sunday, August 18, 2013 6:46 PM
Joined: 12/15/2011
Posts: 18509


I got your email, Mish.  Thanks for the advice.  It's great that you'll be able to return next year and stay in a villa!  It must have been lovely!  Keep traveling as long as you can!

Iris L.

Iris L.
Posted: Monday, October 7, 2013 1:38 PM
Joined: 12/15/2011
Posts: 18509


Mish, how are you doing with your patches?  Are you still using two 4.5 patches? 

I have had no difficulty getting the 9.6 patches.  I just picked up a new box last week.

Iris L.


mish
Posted: Wednesday, October 23, 2013 7:41 AM
Joined: 6/21/2012
Posts: 439


Iris thanks so much for thinking of me- after all that bs I was able to get my 9.5 patches. they had me go through all that for nothing. talk about un-needed stress!

 


Iris L.
Posted: Wednesday, October 23, 2013 9:20 AM
Joined: 12/15/2011
Posts: 18509


I don't want to be without my Exelon patch!  I feel like this is what keeps me going!

You're right, we of all people, don't need the stress of threats of losing our medicine.

Iris L.