Parkinson’s Patients Await Availability of Neupro In US (again)
What if a drug that was working wonders for you was no longer available where you live? I was chatting with a Parkie friend the other day via Facebook, and found out after some of her symptoms becoming more prevalent her doctor tried her on a remaining few patches of Neupro. She had an outstanding response! And now she is out of patches. A few of her friends are looking for any available. If you are not aware, Neupro-a transdermal patch delivering rotigotine, an agonist to treat Parkinson’s and Restless Leg, was approved in the US in 2007 and then in April 2008 it was withdrawn from the market (worldwide) due to a problem with crystalization (and potential decrease in potency). June 08 at http://parkinsons.hopedigest.com/blogs/ucb_suggest_cold_storage_for_neupro this information was released: “UCB pharmaceutical announced today that the company will submit a variation to the EMEA (European Medicines Evaluation Agency) to implement a full cold-chain storage and distribution system for Neupro® (rotigotine transdermal patch) in Europe.In agreement with the EMEA, over the next few months, UCB will be replacing current Neupro® supply with product that has been refrigerated from manufacture. Based on data generated to date, refrigerated storage of Neupro® patches substantially reduces the development of crystals, which can result from the current manufacturing process. Crystallisation in the patch can lead to a change in visual appearance and can theoretically reduce its clinical efficacy, but it is of no clinical relevance in most instances. To date, UCB has not seen a change in the pattern of clinically relevant adverse events, including lack of efficacy, which could be attributed to crystal formation. All Neupro® supply should be stored in a refrigerator. There is no need for patients to transport Neupro® patches in special containers and they must not be stored in a freezer compartment.” So….that has been almost a year ago. My friend has found a few more patches before investigating possibilities of obtaining more of it from Europe. And just a few days ago her doctor indicated that Neupro would be available again soon in the US. Makes one wonder if maybe there is a patch for the FDA to get things like this re-approved faster? Some of us move about as fast as the FDA (or not at all) without Neupro. I’m glad the solution seems to have been an easy fix and has not caused the demise of a valuable drug for some with Parkinson’s! And I hope my friend will not have to worry or go without this drug due to any further delays. You might be interested in bookmarking this website for patient safety info from the FDA http://www.accessdata.fda.gov/scripts/cdrh/cfdocs/psn/index.cfm Judy Hensley 3/3/09
23 Responses to “Parkinson’s Patients Await Availability of Neupro In US (again)”
Sherri on January 9, 2012
Thanks for leaving a comment and your input. We’re all waiting a better solution. Hang in there… don’t give up.
glenn on January 4, 2012
This is my opinion, the neupro patch was working too good so the sorry a– big pharmasudical companies had it removed because it was cutting in on their profits. There are cures out there for a lot of diseases but as long as BIG PHARMA is running America they will never be available. Money is the root of all evil.
Sherri on January 4, 2010
Thank you Bob for you interest and we’ll make sure the information gets out as soon as we know something tangible. Have a great New Year!
Bob on January 4, 2010
Hi, I have used Nupro samples from my doctor and found remarkable results. A normal feeling. I was diagnosed with Parkinson in Jan. 2008 and have found the greatest rusults from Nupro. I would love to find this produce and will appreciate knowing when and where I can get this product.
Sherri on January 2, 2010
Thank you Thomas for the update – what wonderful news!!! We won’t give up hope!!!
Lincoln on January 2, 2010
Would just like to let everyone know that it is my understanding that the last phase of clinical trials is underway. I was very lucky to have been included in these trials. I initially flew to Germany to get the patch before it was released in the US. way back in I think 2006. I was able to maintain my supply through a pharmacy in Munich, although I had to have it hand delivered. It is, to say the least, an amazing medicine. I feel for you all and understand your frustration, but I think great things are just around the corner.
CAROL on November 23, 2009
I have been trying to obtain the patch for my dad. Please advise if anyone has heard any updates re: the return of Neupro patch & where to obtain. Also, has anyone tried “requip” with success? thank you.
CAROL on November 23, 2009
I agree with your thoughts and being in a similar situation would like to see relief & hope for my dad. It is truly an insideous disease. Please advise who I can write to and /or if you have heard anything new re: access to the Neupro patch here or abroad. We all need help before it’s too late. Thank you.
Steve on October 20, 2009
@ Preet
Not much you can do, If customs has it you probably will NOT see it.
Check with http://www.ibenefitrx.com they have a 100% shippment guarantee.
Steve on October 20, 2009
Could NOT find them at Canada Drugs. Neupro is available at iBenfitRX.com Operated by a pharamcy in Ontario. ( One of the strictest provinces in the country ).
http://www.ibenefitrx.com/Find_Neupro_Online.php
Preet on September 26, 2009
Help! I ordered Neupro from Asset Chemist for my father earlier this summer. The first order was delivered without incident. The next order was shipped via registered mail and arrived on Sept. 17 and is currently sitting somewhere in the Customs office in New York. I was told that Customs may or may not release it for delivery. Meanwhile my father is suffering needlessly. Has anyone else had this happen to them? Any ideas on how I can get Customs Service to release these medications? Appreciate any assistance.
bernard clark on September 16, 2009
Neupro is available now fron CanadaDrugs.com
sherri on September 7, 2009
Thanks for the info – we’re definitely passing it on! -sherri
anne on September 6, 2009
You can also get Neupro from UK. The name of the pharmacy is Asset Chemist and contacts are Mr Yomi or Mr Leke. Your best bet is to call them direct 011-44-1375 846 316. You can also e-mail them Customer Services@assetchemist.co.uk. Remember the time – England is 5 hours ahead. They are open seven days a week. Allow delivery time from 7-14 days. Both gentlemen are wonderful to deal with and much cheaper than the meds from Isreal. Neupro is manufactured in Belgium (I think) and so all Neupro is the same. If you get it from them, be sure to ask them about the expiration date. Expiration date is not as long as when Neupro was available in US. And the meds will arrive with jell coolent. Ask them also to e-mail you the tracking number. We live in Ohio and the last meds went somewhere to TN — why? Who knows? Anyway they arrived and my husband is using them.
Good luck!
William R. Wynd on August 22, 2009
Well said Carolyn. I too was a successful user of the “patch” until it was discontinued. Government responds to pressure from the electorate. And, in my view, the means to bring that pressure to bear is throuh the internet. That medium is easy and capable of reaching nearly everyone on the planet. I think we should find out exactly where the “patch” is in the certification process, when it is expected to become available and who are the decision makers that influnce the process. Knowing this we could suggest that interested health care professionals, patients and care givers could contact the appropriate individuals and lobby for some action.
I would be happy to help coordinate such an endeavor. Let me know what you think.
Nancy on August 11, 2009
Can someone provide me with more info on Isra Meds as well. I want to be able to obtain some for my dad.
Thanks
Jamie on August 1, 2009
Thank you. Please provide the info for me to order some patches for my Dad. I will re-finance my home if needed to give him even one day of relief! This really isn’t fair!
Should I call or write to my congressman? Please advise?
Thank you so much.
carolyn on July 22, 2009
Carl, Sherri, Jamie, Judy, Sharla and Others:
Recall of the neupro patch WAS a VERY cruel thing to have happen. When the Neupro patch was approved by the FDA in 2007 my husband, who had young onset Parkinsons, was in the advanced stages according to his doctors at Duke in North Carolina.
In a chair 24/7, his life had deteriorated to the point of no hope. Then the patch came along. It was like a bright star shedding light on the horizon….a miracle in the darkness. It gave him some of his life back….some our life back …..with dignity.
Long story short, with constant financial struggle, I have thus far been able to obtain the drug through a company in Israel called Isra Meds. They are very nice to do business with and once you learn the ropes of their ordering process, it’s relative easy to get the meds if you can come up with the dollars. I’m not sure, in the current economic climate, how long I will be able to provide him with this much needed med while the FDA worries about glue, crystalization and effectiveness.
It seems to me that a group of us should get together and organize an affort to put pressure on, not the FDA directly but, each of our elected representatives in Congress and the Senate(in unison). They CAN make it happen if they want to!
It’s mind boggling that in our country we can go to the nearest GNC, located in most malls, and purchase any number of items that MAY or MAY NOT be good for our health, yet we are not given access to a drug we consider a mircle, nor are we allowed to make a conscious decision about taking a drug (of which we are willing to risk the side effects)for better health and quality of life!!! I’d rather do my own worrying about how much is too much glue or not enough glue…or how many patches in this month’s scrip has crystals….or what will happen if we don’t put the scrip in the fridge. We are no longer children nor are we imbicles. We’ve been making grown up decisions for ourselves and our families for quite sometime now. We can tell if the drug is or is not working without the FDA’s help on this one
I’m willing if anyone else is.
Carl on June 15, 2009
Mom has advanced and was doing well with Neupro as agonist but the recall seems like a cruel joke. Why is it taking so long to re-approve this crutial drug? Is there no one that can expedite the process? There are many PD drugs that are effective for Early stage but Neupro offered much improved quality of life and hope for Advanced Patients. I speak these PDers who are suffering so quietly and patiently for it to return so they can regain the functionality, and dignity that they struggle with in their elder yrs.
admin on May 12, 2009
Hi Jamie –
So far, it appears that the Neupro/Ritigotine patch is still undergoing testing to be re-released. Hopes are high – it seems it was banned due not to the effects from the drug, but the glue used to adhere the patch to the skin. There is a current trial going on presently but if your dad has already used it, he would be excluded from participating. I don’t know about availability in other countries. One drug that I have been on that seems to really help with stiffness/pain/cramping is Artane. If he hasn’t tried that, it may be worth looking into. I, too, hope the testing comes to a close soon and they are available once again as they were pretty nice to have! Have a great day and thanks for visiting PJ! -sherri
Jamie on May 12, 2009
Hello. The Neupro patch is the only thing that helps my dad and now he is suffering daily with pain and cramping – not to mention all of the other symptoms. Is this patch available in other countries? Any info would be greatly appreciated.
Thank you.
Judy Hensley on May 11, 2009
Sharla I could not find any updatess about when Neupro will be available iin the states. I will check with my friend to see just how her doc knows anything different.
Judy
sharla straw on May 5, 2009
HELP my mom was seeing much improvement for the first time in years while using the patch……… does anyone out there know how to get them from overseas? and what area are you in that your doctor spoke about the patches becoming available again here?