How long have you been on it and what do you think?

My dr. is giving me a hard time for not starting it. So far I have read nothing but complaints, and none outweighed by the benefits.

I have been on Neupro since July and I am happy with it. When I first started it was great- my Stalevo did not wear off at all during the day. Now my Stalevo wears off again, but I think it is because my PD has progressed, not because the Neupro stopped working. The Neupro patch will help extend the life of the other medications you take. I started with the 4 mg patch and now use the 6mg patch. My skin is red when I take the patch off, but it goes away in a few hours.

I am surprised this thread has had so little response. I have been watching it with interest. It is much discussed among a group of Parkie's we belong to.

My husband was on it for several months. In the beginning we thought it was a good thing but gradually we came to realize that it was not. He stopped using it because it made him "fuzzy" mentally and induced some of the same compulsive behaviors as other agonists. He is now agonist free and doing much better. His gait, attitude and speech have all improved.

Of the 8 folks we know who tried this patch, all but two have stopped using it for various reasons. Of the two still using it, one has had to stay at 2 mg.
I should also indicate that hubby had DBS in Feb 2007. He is now only taking Stalevo. None of the others have had DBS.

male 71
dx 7 years
approx 5 years amantadine 100mg 3 daily some help for tremor.
1200 mg coQ10 daily taken in 4 Q-Gels equivalent................
eagerly waiting for neupro availability.................................

7 days 4mg patch free samples
plan D insurance wont cover it....
7 days 4mg patch $75
28 days 4mg patch $300
7 days 6mg patch free samples

insurance says try something else....so far no benefit observed

6 weeks free samples mirapex increased weeky..no benefit
insurance approves 3 mo 6mg patch.
28 days 6mg patch...insurance $200 copayment $50........total $250
28 days 6mg patch...insurance $200 copayment $5o.......total $250
still no benefit....discontinued patch, feel jilted........

18 days carbidopa/levo 25/100 began 2 daily then 3...no benefit

reduced and discontinued amantadine maybe cause of hallucinations.....
continued coQ10 and creatine

7 days free samples stalevo 25/100/200 ....no benefit
30 days free coupon for stalevo to be redeemed.......

neuro ordered B12 and folic acid tests. some conditions mimic PD
HEY MAYBE I DONT HAVE PD...I do have the symptoms of PD

i spoke to one man who said neupro helps him... neuro has 30 patients using the patch reporting favorable. note one chain pharmacy gets $250 and another $300 for 28 days. i found canadian is much higher than local pharmacies......

THANK YOU ALL WHO SHARE YOUR FINDINGS...i was especially moved by your comments on coping...you are so valiant and inspirational........

Thanks for the detailed responses.

Davos - Hopefully you don't have PD. Although patients don't usually present after 40 years, Wilson's Disease is another one to check. It's any easy test but unlikely because of your age, but hey, my neuro said it was unlikely I had Parkinson's because I was 30...

Quote:

http://en.wikipedia.org/wiki/Wilson's_disease Wilson's disease or hepatolenticular degeneration is an autosomal recessive disorder, with a male preponderance. Its main feature is accumulation of copper in tissues, which manifests itself with neurological symptoms and liver disease.

Good luck,
Robert