neupro recall alert

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yekkimo
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Date Joined Apr 2003
Total Posts : 1279
   Posted 3/31/2008 7:42 PM (GMT -6)   
Neupro is being recalled in the U.S.by the manufacturer.if you are on this medication you need to contact your neurologist.for all the info you need relative to this recall Google neupro recall.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


claell
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/11/2008 4:57 PM (GMT -6)   
I am heavily reliant on my 2 mg. patch because I need something to bypass my digestive tract. Does anyone have spare patches from the recall that are nolt in use that you would be willing to sell me? I would happiloy pay the price of a refund.

lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 324
   Posted 5/12/2008 2:25 AM (GMT -6)   
First of all, the Neupro patch was recalled due to efficacy issues, not safety issues. Efficacy meaning (unscientifically or medically) it may or may not have been delivering the dosage anticipated. Not a safety issue ...meaning that the drug in and of itself it not a safety issue. Some patches had a crystallized snowflake-looking design on the patch that meant it might not be delivering the anticipated dosage ... but is still safe.
 
Having said that, it's my understanding that the drug company, UCB-group or UCB Pharma (aka Schwarz-Pharma in previous days) was making ample samples available to neuros. It's my understanding that the patch would not be available after the end of April. Some neuros may still have samples available.
 
Claell, hopefully something works out for you. Better yet would be that Neupro is reintroduced to the market because many folks seemed to do well with it. You might check with your neuro or others in your area for 2 mg samples.
 
best of luck!
lizzy4451
Life is a dance. Don't sit it out.  ---- Jackson H. Brown


yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 5/12/2008 6:40 AM (GMT -6)   
Claell,There are several injectable PD drugs available .I don't know if they will work for you .Google injectable parkinson's drugs,and check with your neuro.Wish you the best Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 324
   Posted 5/12/2008 7:31 AM (GMT -6)   
Ed is right. Apomorphine is an injectable plus Zelepar dissolves on your tongue. You might ask your neuro about those and other options.
Life is a dance. Don't sit it out.  ---- Jackson H. Brown


claell
New Member


Date Joined May 2008
Total Posts : 3
   Posted 5/12/2008 1:55 PM (GMT -6)   
Thanks for your inputs. I talked to my neuro first. He didn't nave any samples, and suggested I look around on the internet, chat rooms and forums to see if I could find them. I don't know about the injectable drugs, althoiugh I suspect he wouldn't recommend them, because I'm pretty res[o0nsive toi drugs and dyskenesia is always right there around the corner. The company website said they were'nt sure whether they would ever export to the U.S. again or not, but they have a limited supply for most countries in Europes. So I'm still looking. I'm not sure about apomorphine either, My neuro says it's a rescue drug, and my other neuro who supervises my DBS says it's more broadly useeful than that. We'll see. Thanks again for your suggestions,

lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 324
   Posted 6/6/2008 12:52 AM (GMT -6)   
Claell,
I just have to add that initially Apomorphine, the injectible, was marketed as rescue therapy - to be used in extenuating circumstances. However, another pharmaceutical drug company either started selling and/or marketing the drug and promoted it for regular/daily use. (I'm sorry I don't know the pharmaceutical drug company names ... but could undoubtedly search the internet and find em). I'd search on 'Apomorphine', if interested.
 
Educate yourself. You are your best advocate!
lizzy4451

Life is a dance. Don't sit it out.  ---- Jackson H. Brown


The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 6/22/2008 4:42 AM (GMT -6)   

Hi Ed, I stilll have no problem getting neupro here in the uk andt hey certainly haven't been withdrawn - although I have just started on sinemet I am still using the patches in tandem and there has been a bit of an improvement in  my condition - I can now type again and my right foot has 'unlocked'. I understand what you say about the snowflake crystalisation but I hhave noticed that this only happens where the two 'peel off' patches meet. What we have been instructed to do is keep the patches in the fridge and I have to say the adherence has improved since I have done this. May I suggest your correspondent googles sites in the uk for patches? You cannot buy meds legally off prescription but he/she might find a quantity of unused patches and also think about larger patches which can be cut up.

regards

the bear

.

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 6/22/2008 6:09 AM (GMT -6)   
Bear, Great to hear from you again,and glad to hear that you are getting some improvement in your PD.Thanks for your input on neupro.I'm off fishing hope you have a great day .Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


chopsuey
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/9/2008 3:08 PM (GMT -6)   
hello everyone,i am a caregiver to my partner who has pd,about 4 years ago he was using the apomorphine injections for when he was in the off stage,he had great success with it for around a year then the benefits began to wear off,22 months ago he had dbs which again has been quite a success although i am now beginning to see some of the twitchin and writhing movements coming back,he is also on the neupro patch (rotigotine)10mg per day and we have been struggling to get it for the past 3 months.we have also been advised by our chemist to keep it in the fridge to stop it crystalising.anyway enough about us hope you are all as wel as can be.
                            bye for now
                                chopper in england

chopsuey
New Member


Date Joined Jul 2008
Total Posts : 3
   Posted 7/22/2008 1:24 AM (GMT -6)   

just an update on the patch,at the moment the manufacturer can only supply the 8mg,as my partner is on 10mg per day his gp is having too contact the parkinsons specialist to seek advice as to what to put him on.

   all the best  chopper


bayside
Regular Member


Date Joined Aug 2008
Total Posts : 27
   Posted 8/24/2008 5:40 PM (GMT -6)   
I was told last week that Neupro is no longer available in Canada. I saw that my refills had been taken off my profile and called to see why. The drug company advised me Schwartz was "re-tooling" to make Neupro using another process. Said it would be on the market again, but they did not have a time frame. Also all the on-line drug companies in Canada now say Neupro is "no longer available from manufcacturer".

Like so many others, Neupro gave my life back to me. I have written Schwarts encouraging them to expedite the change. I have gone the route of Sinemet, Mirapex and others - did not work for me at all - Neupro gave me immediate relief from my hellish symptoms and I believe it stopped Mr. P. dead in his tracks. I don't believe it can restore damaged cells, but in me it did either stop or greatly slow down the progression. Has anyone else had this experience? I do not want to go back to that horrible place I was before Neupro. Righ now my functions with 6 mg are near normal. Does anyone have any information regarding manufacture or availability of Neupro? Or a time frame? I feel like I'm on death row until they start manufacturing again or make a source available.

I believe if I had Neupro when first diagnosed 7 years ago, I would not have this deterioration. To me this is hopeful for early PD people.

I truly believe there is an answer for each of us!!! Hang in there.

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 8/24/2008 7:46 PM (GMT -6)   
Bayside,Welcome to HealingWell.If you haven't done so allready I would google Canadian drug companies to see if any have neupro in stock.We need to hear from other Canadian members relative to the availability of this drug.What are other HealingWell members doing that were or are on neupro????????Let us hear from you out there.I wish you the best.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


bayside
Regular Member


Date Joined Aug 2008
Total Posts : 27
   Posted 8/25/2008 5:21 PM (GMT -6)   
Ed, thanks for your "welcome". Being new to this type forum, I do not want to overstep the bounds but I found a internet source in Israel and they tell me they have plenty of Neupro in stock. But I didn't know if I should post it. Ordered iNeupro t and is supposedly in the mail to me today - 6 mg 2 mo supply. Air mailed and should have it within a week. I nearly had to rob a bank to do it, but my husband says he will do anything to have his wife back. Or I should say, to keep the wife that he now has back.

If you want this info, I willl gladly share it - or should I wait until my order comes - this drug company told me they were so bombarded they could hardly keep up and had to ship my 3 month supply in 2 separate orders - We checked the drug co. out as best we could before I handed out my cedit card and feel confident all is ok. But as with everything, nothing is certain.

Please let me know how I can help - I understand the desperation we share, especially when there is something like Neupro just outside one's reach. My husband and I were researching stem cell therapy, and the sad or good thing, depending on how you look at it, I do not need stem cell therapy or anything else - just Neupro - why should I consider looking elsewhere - because of the fear that it may not be in the mail. And may not come before I slide back into that pain ridden, horrible - you all know the place - with Mr. P.

I truly know there are answers for all of us. Maybe different answers for each of us, but there are answers.

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 8/25/2008 6:31 PM (GMT -6)   
Thankyou.Those wishing to research further can google-source for neupro in Israel.I hope this works out for you.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


bayside
Regular Member


Date Joined Aug 2008
Total Posts : 27
   Posted 8/27/2008 10:23 AM (GMT -6)   
For anyone looking for Neupro - received 2 of 3 months supply today from Israel. Quick service - mailed on 25th and received on the 27, along with an ice pack which was still cold. Apparently they only send so much per pkg to keep it cold. I am so excited.

I'll gladly share any information.

The Bear
Regular Member


Date Joined Mar 2007
Total Posts : 364
   Posted 8/31/2008 5:38 AM (GMT -6)   
Hi Ed, update from the uk re neupro. Went to pick up my three monthly  script only to find, you guessed, 'no longer available from the manufacturer' but oonly the 8mg patches. It would appear that over here they  are doing the retooling or whatever [inproving the efficiency of dispensation] and after having my gp rejig my script for more 6mg patches, teh pharmacist managed to get hold of the 8's so I don;t really know what is going on. It's good that they can be sourced by the Isreali pharma company but it must cost an arm and a leg. The cost of one box of 8's to my gp budget is £130 - $240 or so - so heaven only knows how much it is costing mail order but maybe bayside could say how  much so that peple can make an informed decision as to the affordability?
Hope you are well Ed and that the fish are biting.
the bear

bayside
Regular Member


Date Joined Aug 2008
Total Posts : 27
   Posted 8/31/2008 9:02 AM (GMT -6)   
Mr. Bear,

Am more than happy to share anything I know. I paid $529.00 per month plus $24.95 for S&H to be air mailed for 3 month supply of 6 mg. ($12.95 reg. mail) The great thing is that with air mail, it arrives 3 days after you order it, with a cool pack. There does not appear to be any crystalization as I have randomly opened the boxes.

I ordered calling their 800 number and then I faxed all the forms they had e mailed me along with presc. Neupro was in the mail the next day and received in 3 days. I would put all specifics here, but am not sure what the rules are for this site. (even after I read the section on rules.) Can someone please let me know what is allowed. Names of suppliers, web sites, e mail addresses? Is this a form of advertising? I want to honor the forum that Healing well has established.

There are several drug resources in Israel, but after research, felt most comfortable where I placed my order and so far, so good.

Let me know how I can help. I can't believe Schwartz left all of us Neupro users high and dry. I am functioning today only because of Neupro! Do you have any info on how long this re-tooling is going to take?

Have a great day. bayside

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 8/31/2008 4:48 PM (GMT -6)   
Bear,glad to hear your supply of neupro is still available,and always good to hear from you.The fishing is slow right now but should pick up soon.Stay well,and stopby soon Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 8/31/2008 5:00 PM (GMT -6)   
Bayside,I'll try and clear up the advertising issue for you.names of pharmacies,their websites or their e-mail addresses are not permitted under HeaingWell rules.although not advised you may give your e-mail address.You may also send the info to my e-mail addres,and those that wish can e-mail me..Hope this answers your question.Stay well,and thankyou for your contributions as a member of HealingWell.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex
 
support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.


bayside
Regular Member


Date Joined Aug 2008
Total Posts : 27
   Posted 9/5/2008 12:59 PM (GMT -6)   
Ed,

Thank you so much for the guideline info. I am going to try and find your e-mail address and send the web-site to you.

Today I received 112 6 mg Neupro from Israel, so anyone looking for Neupro can still get it. I am so thankful I do not have words to express my joy. Believe me when I say I would rather have those 112 Neupro than to win the lottery if I were given a choice. If only these could be obtained by a neurologist, I would be on such a band wagon, because I can't tell you how good I feel. I have been on Neupro only a little over a year - has anyone had any experience with Neupro for a longer period of time? In reading others experiences, it seems when a drug works, it's usually for a year, then it stops working. Am I reading things right with a time frame? In the world of PD, we truly have to take one day at a time and be so thankful for a good day, because we are not promised another!!

My prayer today is that all with PD find your answer so you can truly say, "I can't tell you how good I feel today". Hang in there - I know that day is coming.

bayside
Regular Member


Date Joined Aug 2008
Total Posts : 27
   Posted 9/5/2008 1:13 PM (GMT -6)   
Ed,

I can't locate your e-mail address - would you kindly give it to me so I can give you the info? thanks.

By the way, we have a big pond - and I go sit by it on a bench and feed the fish just about every day - and watch the ducks - so peaceful. I can't try to catch the fish - especially when I have just fed them!! I'll leave catching them to you and others.

Wudstuck
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/6/2008 6:51 PM (GMT -6)   
Hey there, Bayside...

Been watching this line of chat on Neupro. Been on 8mg's for long time. Panicking because Canada doesn't have it anymore. Can you email me the info for the Israeli pharmacy that you felt most comfortable with. I'd be forever indebted to you!

Wudstuck

Wudstuck
New Member


Date Joined Sep 2008
Total Posts : 2
   Posted 9/6/2008 6:54 PM (GMT -6)   
Sorry... my email address is wudstuck@gmail.com

bayside
Regular Member


Date Joined Aug 2008
Total Posts : 27
   Posted 9/6/2008 7:32 PM (GMT -6)   
Wudstuck,
 
I e mailed you the info on the drug co.  let me know if you did not receive it.  My best to you and let us know how it turns out.   bayside
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