[madamlash]

I picked up my refills on my Mirapex ER 1.5 (2 per day) and Carbidopa Levodopa 25-100 (1.5 every 2-3 hours.) It was immediately obvious to me that the C/L wasn't right. It is the TEVA round yellow tabs with the split mark. I am experiencing tremendous off time and have to add another half pill just to get by. Gee... they didn't charge me less for less medication but it is obvious to me that I've been ripped off again by substandard meds.
Then I read about the shortage of meds???? What the hell????
So, in my frustration and anger, I started thinking... wouldn't it be possible for all of us PDers to form a non-profit, buy into it with reasonably priced shares of stock and open a factory to make our own Carbidopa Levodopa. At least the owners would care about the quantity and quality of the drug. We would then all have a reliable source. I've never been one to sit down and take it. Just because PD has slowed me down a bit, I'm not dead yet and I'm angry as hell and not going to take it any more.

What do you think???? Anyone else mad??? We can write letters, we can carry signs, we can go to Washington. Those are certainly worthy efforts and we should do all of them but... how about just taking the problem into our own hands? Why can't we just manufacture our own Carbidopa Levodopa???
Lest I anger anyone, I'm not suggesting that this is the only medication needed, I'm just suggesting a starting point.

[Bob Dawson]

Exactly. The business model is not working because there is no contact between the consumer and the manufacturer. Crank out cheap yellow pills based on a formula from 60 years ago, and PWP are going to swallow those pills, even if their bio-availability varies by 40% from the original. (40% being the legal limit of variance) (and even that, no one is checking).
The problem, seems to me, is in getting PWP to purchase the pills as a group. We don't necessarily have to own the manufacturing process (although it would be great to be able to invest in Ethical Pharma). I don't know how much is spent on PD drugs in America, and in the world. Let's say it's a billion dollars a year. And then imagine it was for chocolate bars. The common business thing to do is to put it out to tenders, with a completely detailed list of specifications. You will get proposals from Nestle, Mars Bar, Hershey, and others. You give them a three year contract to be our suppliers, with a cancellation clause saying we can cancel the contract at any time if there is the slightest deviation in the quality standards. When you go to market wanting to spend a billion dollars, believe me, they jump through hoops to get the deal. Then charge PWP a 20% surcharge on the pills, yielding $200,000,000, which the org. then spends to pay for nurse specialists to visit PWP and watch over them.
Or for local human white mice to try some outrider research.
Just sayin' though, who writes the cheque for the product gets to set the specifications. And they would have to listen to us if they want to go home with a billion dollar sales contract.

[geraldo]

Dear Madamlash

I have tried c/l made by Teva to be margenal at best. My neuro specified a scrit for a brand name not a generic. She did not specify a mfg, only that it should be a brand name not a generic due to their lack of consistancy. I got lucky, my pharma( mail away) sent me C/L made by BMS and it worked really great for several years. Then BMS was bought out by Merck and they would no longer be mfg the formula that BMS used. Mercks Branded C/L does not work as well as the BMS. I have been trying to find a branded product to replaced the Merck C/L. It ain't easy. It seems that big pharma could care less about the consumer. Good luck on making your own C/L.
I currently take 2 carbodopa/levodopa (merck)25/100. every
1 azelack 1mg ,once a day
GERALDO

[Conductor71]

Madamlash,

Bummer that the med fluctuations are going to happen eventually no matter what the brand. The short half life of levodopa and that the perpetual on/off stimulation actually alters our brain's plasticity leading to "motor complications". Two possible solutions may be approved this or next year by the FDA. One is Duodopa the intestinal pump and a new long acting levodopa pill now with its top secret code name IPX066 by Impax. What's cool about the newer pill is that they have targeted one formulation for early PD and two for advanced. Impax is slated to unveil clinical trial studies at the big neurology conference in June 2012. I suspect they might (hope, more so) that the FDA wil approve it around the same time.

IPX066


As for patients banding together to take charge, I am all for it. Please see Jim's thread on "nothing short of criminal".. I have been wanting to form a patient run cooperative for quite some time. We could possibly offer alternative treatments, annual retreats, have our own annual "conventions", activists, etc. but cannot do alone. I have 2-3 others interested, so if I could get a few more people, we might make a go of it?

http://neurotalk.psychcentral.com/thread165065.html

Laura

[rickart]

so glad I found this forum, I have got a 3 month supply of Teva 25/100 carb/levo and it SUCKS.....almost 80% off time, lots of cramping and stiffness...my CVS just switched to them...dont know what to do, they are useless....may as well go for DBS surgery if this crap is all I can expect, good luck everyone!

[stevem53]

I went through the same crap with TEVA..On with one dose, off the next..Cant make plans, cuz you have no idea what is going to happen from one hour to the next


The BMS Sinemet was the best


I take Stalevo 200 mgs x 3 daily..Its expensive right now cuz I hit the doughnut hole two weeks ago..But for me it is worth every penny


It has been predictable as long as I take it on an empty stomach in the morning, and take every dose on time

Some people cant take it cuz of dyskinesia, but I only get about 20 minutes of it when I go off for the night..I can deal with that


Sorry about the large bold font..I have a swollen cornea in my right eye, and I cant see what Im typing without it

[Jim091866]

I take c/l and get mine from Walgreens. I live in Central Florida and have a very good relationship with my pharmacist. I only take the Teva, I guess I'm used to the low level junk, they switched one time to some stuff from another company and I had to more than double my dose just to get any effect! I have known about the variance in the generic but my insurance co-pay if I went to brand name is sky high. I guess I'm used to the crap, I wonder how bad that one company was when I already was feeling pretty good about what you guys are talking about! Wow!

[Jim091866]

Originally Posted by rickart

so glad I found this forum, I have got a 3 month supply of Teva 25/100 carb/levo and it SUCKS.....almost 80% off time, lots of cramping and stiffness...my CVS just switched to them...dont know what to do, they are useless....may as well go for DBS surgery if this crap is all I can expect, good luck everyone!

All I can say is hang in there. Duodopa is coming. You won't have to take medications by mouth anymore, best thing since sliced bread!!

[Jim091866]

Originally Posted by Conductor71

Madamlash,

Bummer that the med fluctuations are going to happen eventually no matter what the brand. The short half life of levodopa and that the perpetual on/off stimulation actually alters our brain's plasticity leading to "motor complications". Two possible solutions may be approved this or next year by the FDA. One is Duodopa the intestinal pump and a new long acting levodopa pill now with its top secret code name IPX066 by Impax. What's cool about the newer pill is that they have targeted one formulation for early PD and two for advanced. Impax is slated to unveil clinical trial studies at the big neurology conference in June 2012. I suspect they might (hope, more so) that the FDA wil approve it around the same time.

IPX066


As for patients banding together to take charge, I am all for it. Please see Jim's thread on "nothing short of criminal".. I have been wanting to form a patient run cooperative for quite some time. We could possibly offer alternative treatments, annual retreats, have our own annual "conventions", activists, etc. but cannot do alone. I have 2-3 others interested, so if I could get a few more people, we might make a go of it?

http://neurotalk.psychcentral.com/thread165065.html

Laura

Hi Laura,
Have you heard anything lately on duodopa? Last I heard was the release of data from class 3 clinical trials. No marketing information. I thought someone mentioned a while ago about Abbott waiting for some patents to expire, I don't know why or what they may have been referring to. Take care.

[soccertese]

i take 1/2 tablet of the teva 25mg/250 C/L and works great even though i'm getting half of the carbidopa. i pay out of pocket for my drugs so save money doing this, i get a deal from a pharmacist friend.

haven't tried the brand name nor the any of the generic 25/125.

if you go to an independent pharmacist, you could ask them for a small supply of the 25/250 to try. not sure how a chain would respond to such a request. or get a small supply of the brand name and see if it does work better just to be sure it's the drug and not something else.

you can also contact the FDA, the company, your insurance provider and the pharmacy - can't hurt.

there's also the possibility of counterfeit drugs.

just an option, doesn't solve the long term problem.