Thanks for letting the forum know Fiona. It's sad when you have to read between the lines to try and figure things out for yourself. I've heard some people got leg cramps from it...wonder if that has anything to do with it but don't quote me, just wondering.

Jan, i don't know what to say to you.....it happens so frequently and upsets so many.

my best wishes for a substitute for all involved
paula

If you go to Neupro's home page, it explains the recall and has photos of what defective patches might look like. I'd include the link, but this is my first post, so I can't. I received the info in an email today from MyParkinsonsInfo.
Hope this helps and maybe they can correct the problem quickly.

Ok, I just had dissatisfying conversation with various reps from UCB. I have a 2.5 month supply left, had just finished titrating up to my full dosage over a six-week period and leaving Mirapex behind in the transfer. I had tried to do this several months ago and wound up in the emergency room because I did it too quickly (but I was only following my doctor's instructions...) So down-titration would certainly be an important issue to me.

I got the email with the snowflake pictures and so forth. I opened one or two of my remaining patches, and lo and behold, they had some snowflakes, more than the good picture and a little less than the bad picture. But the thing is, I can't tell how many viable patches I have left, unless I open them all. And once I open them, they have to be used immediately or disposed of.

So to my questions to the reps - both in "Medical Information" and "Product Complaints":

Q How do I assess the borderline between a good and a bad patch if it's somewhere in between the two pics?

A (from UCB) It's a judgment call, and you could ask your doctor.
(Right. Every morning when I open a patch???)

Q How defective is it likely to be? Are we talking 25%, 50%...?

A We don't know AND/OR your doctor will advise you.

Q How does my doctor know if you don't know?

A Um........

Q If one patch from a month's suppply box is defective, does that mean the whole batch is defective or what?

A Answer A: We don't know Answer B: your doctor will advise you.

Q Are you interested in knowing which batches we have discovered defects in?

A No, because we already have that information.

Q If you already have that information, then why we can't have it so we know if, for instance, we don't even have enough viable product to down-titrate on?

A your doctor will have that info....

I believe that my doctor actually doesn't have that information, but I will update you guys in case it turns out that he actually does....Based on the quality of my conversation with these reps, it seems unlikely...

litiguous societies. Also known as the "the buck not only doesn't stop here, it doesn't even slow down for you!"
It is infuriating to get the "party line" from someone you KNOW has the answers but won't (can't?) give you a straight answer, leaving you to read between the lines for an answer.
I wonder if they can be successfully sued for pleading the "5TH"???

Welcome back Fiona!!

Charlie

http://www.neupro.com/pdf/Neupro_US_Physicians.pdf

"The decision to recall is due to the formation of rotigotine crystals in the patches. When the drug crystallizes, less drug is available to be absorbed through the skin. Therefore, the efficacy of the affected product may vary. "

paula

I had the opportunity to talk to Jeff and Kelly, the Neupro (UCB-Group) pharmaceutical reps for my state. Neupro is being recalled due to a manufacturing error. It is NOT an issue of safety, but rather of efficacy.

Some patches have what appears to be a snowflake-looking crystallization which does not affect the safety of the medication, but whether an equal/even amount of medication is delivered. If the patch does not have the snowflake-looking crystallization, then it is fine to use. The others are not unsafe, but may not deliver an equal and even distribution of the medication. They are unable to determine (without visually seeing the patch) which patches are affected, therefore all Neupro patches are being recalled in the US. The Neupro patches are not being recalled in Canada or Europe.

The reps are working closely with the neuros/docs to educate them and to make samples available for patients. The Neupro reps strongly encourage folks to contact their neuro/doc to develop a plan to titrate off Neupro. You should not quit cold turkey. You should titrate down at the rate of 2 mg every 2 days. Ex., if currently on 6 mg/day, should titrate down at the rate of 4 mg - 4 mg - 2 mg- 2 mg - off. But ... contact your neuro/doc to confirm this and to develop an alternative plan.

None of my neupro patches had any of the crystals.

But I've safely titrated off. I haven't noticed any difference now that I'm off the med.

Jean B

My patches had them big ol' snowflakes on them. Having 20% or more of the patch compromised could lead to a big difference to someone who is on a delicate balance of a lot of meds, and vulnerable to sudden, violent dystonia attacks that can send one to the ER.

I spent about 15 hours on the phone at least pleading with various UCB reps and pharmacists to understand that the situation was hard to negotiate when I took 6 weeks to titrate gradually up and off Mirapex (after 9 years of Mirapex), they're saying don't stop abruptly, but also don't use patches that appear defective. I am looking everywhere for some patches that we can safely assume are viable.

One wonderful executive at UCB reached out and is personally helping me to resolve the situation. If anyone else has a similar problem, PM me.

Thanks for pos ting Fiona and anyone else - you are telling this story, we need to hear the way it really is to know what the fine points are that we want to change.

paula

I had just gotten a 90 day supply in the mail the week before the recall so I plan on using all of them (if they don't have too many crystals). I have used a few that did have crystals on them but the crystals were minimal and I felt like I was getting plenty of the drug.

My neuologists office called me last Friday and said that the Neupro rep had been in the office and dropped off a bunch of samples so they gave me 7 more weeks. I don't plan on trying to titrate off the drug but rather weather the storm and hope that they can get the manufacturing issue resolved.

I love the patch and really don't like the idea of having to try something else. Although, I guess time will tell....I may not have any other option.