WE are very disappointed with the recall of the neupro patch. My Dad has done an about face, after 4 years of treatment he began this patch, and was back to his old self like a miracle! He called his Dr., and he said that it may NEVER be manufactured again, but did mention a phrase called "compassionate use" for him. Our fingers are crossed we can continue to obtain it.

RubyD -

I was diagnosed a year ago and after sinemet and comtan since, my doc added Neupro three months ago. I was once again able to get around and function largely without help.

I'm not looking forward to being nearly helpless again. I'm 46, my wife is 42 and our boys are 7, 9 and 16. Having been diabetic for 35 years, I've always known my life would not come to a "normal" conclusion, but my family deserves better than what it looks like is coming.

This just plain stinks.

Thanks for letting me vent.

Hi all!! I new to this site and am figuring it out but getting there. I stated in another thread that I was in the clinical trial for Neupro aka Rotigotine. I was on Mirapex for a couple of months after being diagnosed 1/2005 at 48 yrs. old. I was asked if interested in the research study of "the patch". So, I was on the patch for almost 2 1/2 yrs. It was wonderful. I didn't feel I had PD. People could not believe me when I told them. I was so grateful when the FDA approved it finally in July '07. Now, I am so frustrated to be back on Mirapex. I spoke to Connie Tinnie at UCB who told me that we would be reimbursed for those patches not used. I have yet to hear anymore about that. She was to call me last week but never did. I'm set to call her Monday morning. I've stopped the patch and began Mirapex a week ago. I wish I would have found this site sooner....Reading that most of you are continuing on the patch until......I know that you must follow your Doc's instructions but if you see no snowflakes on your patch why not continue until you are out and then titrate. I went from a 6 mg. patch to 0.5 mg. Mirapex in one day...following doc's orders. I know it takes time to adjust but this is soooo inconvenient. I'm so sleepy, gait is bad, tremor is bad.....I surely hope this isn't a politcal thing, like shares of the company are down or what have you. You know you find something that works and you are actually excited that it helps with your "condition" and then it gets yanked from underneath you. It sucks!!! That's putting it bluntly. I'm just so frustrated.

And tired. Must hit the hay, again.

Parkie Patty

I am using up my Neupro patches I have. My understanding is that they can still be used unless they have a lot of the snowflakes on them. When I use up my 6 mg patches, then I will use 4 mg patches for several days and then 2 mg patches to titrate down. Then I am suppossed to start on Requip and will have to titrate up on it. I see my doctor next week and will get the 2 mg Neupro patches and a starter kit for Requip.

Hi folks,
"Christine" from UCB called me a week or so ago with the Reimbursement Hotline Number - her message was a little indistinct, but it sounded like 866-766-2648. Try that and if it doesn't work for you guys, let me know, because out of obstinance and fury I eventually got hold of a very empathic and wonderful exec at the company who pledged to help me and has...would be glad to try to help others in turn....

Yeah, I'm supposed to titrate off it too, and go to Requip. But I refuse to go to Requip - which I understand is the slightly - but only slightly - less insidious version of Mirapex. Getting off Mirapex is one of the best things that has happened to me - all incidents of dystonia almost immediately gone now - used to be almost daily and now maybe a 5% version twice a week, and those are diminishing, too. So I am going to find another solution...got these accupuncture ear implants this week - so far so good, giving me considerably more energy...

So my view is rotigotine is - has been - a partial ally, but maybe we can do better...Oh, and I think titrating overnight off this is - well, I'm sure it's case by case, but I think it's pretty unrealistic for some of us, again a total case of "not getting it" by the people who make and profit from the products that most govern our lives and health...

Those of you trapped by this mess might want to lookat the thread on mucuna use. I've been experimenting for several weeks now and, while the convenience factor is definitely going to be missed, I do think that it could be a big help in making changeovers. However, if I were going that route, I would try to start bring the mucuna into the mix as the other was leaving rather making an abrupt change once the last patch was gone. Never good to shock the system.