[reverett123]

Has anyone noticed problems with quality of their Sinemet or generic over the last six months or so? I have been having a number of issues that would be explained if that were the case. Big Pharma obviously (IMHO) has been using availability to push us toward the pricier options. Random fluctuations of quality would be another tactic in pursuit of that goal. I have also noticed a marked drop of numbers in the two PWP forums that I frequent over the same period. Dopa blues?

[VICTORIALOU]

Originally Posted by reverett123

Has anyone noticed problems with quality of their Sinemet or generic over the last six months or so? I have been having a number of issues that would be explained if that were the case. Big Pharma obviously (IMHO) has been using availability to push us toward the pricier options. Random fluctuations of quality would be another tactic in pursuit of that goal. I have also noticed a marked drop of numbers in the two PWP forums that I frequent over the same period. Dopa blues?

Hi Rick
Absolutely, I have noticed a decline in the effectiveness of my carbidopa/levodopa over the last 6-9 months. I was switched by my pharmacy to a generic made by TEVA which I noticed a difference with but managed OK- (you know how there are so many factors determining how we feel) but just about a month ago I was switched to a different generic brand called ACTIVIS ELIZABE. I immediately felt worse like I wasn't getting enough. I have pretty severe tremors so it is quite obvious when my meds are off.
I tried to look up this company just now since I am unfamiliar with them. They have a rinky-dink website, won't state where their corporate headquarters are but I am guessing possibly India since they have a buddhist monk on their opening page of their website. Opps, I Just saw they just moved to Switzerland from Iceland. There are no pictures of any identifying nationalities, their corporate board is all europeans with not one doctor that I saw on their corporate board. All attorneys, aero space engineers, auto company execs. I am sure the US in trying to cut costs is going to the very cheapest bidder. This is whose hands my life is in.

Thanks for bringing this up Rick. The next time I see my neuro I am going to ask specifically for a non-generic brand and see if I can get around this.
Otherwise you'll find me on my front porch smoking(snorting) banana peelings.

[Bob Dawson]

Whoa, I would go easy on the banana peelings. There's been no good banana peelings in the streets since Woodstock, when we had the Owsley blue bananas. Used to go good with a bottle of Jack Daniels and a fistful of magic mushrooms.
I digress. What I meant to say is: my sinemet experience has been disastrous for about the past 4 months. It's generic stuff cranked out by the only producer in Canada - the one that shut down production of sinemet the same week that Merck did. It was a co-incidence, of course.
But as always with PD, there could be a hundred reasons why I am doing so badly all of a sudden.
Strangest thing is the worst hour is the hour after I take the pills.

Rick, I hear everybody is out celebrating Amgen's birthday.

Originally Posted by reverett123

Has anyone noticed problems with quality of their Sinemet or generic over the last six months or so? I have been having a number of issues that would be explained if that were the case. Big Pharma obviously (IMHO) has been using availability to push us toward the pricier options. Random fluctuations of quality would be another tactic in pursuit of that goal. I have also noticed a marked drop of numbers in the two PWP forums that I frequent over the same period. Dopa blues?

I was doing well on Carb/Levo until about 4 months ago. Was taking the Mylan-made generic and only problems was dyskinesias which can be reduced by adjusting amount of drug taken at diff. intervals.
But, now my pharmacies can't get Mylan's Sinemet.
Started taking Teva's and had allergic reaction. Switched to Purepac's generic, but it is even worse. Was going to try Activis, but now having read VictoriaLou's post, I think I am going to slowly take myself off of Carb/Levo and Ropinerole. Why the heck not?
I need to improve my fluctuating mood and my thought processes. Maybe if I do this, I will have no choice but to be consistent in exercise and eating the right foods. We'll see what happens.

So, yes, I've noticed this. And, to sum it up, it sucks.
But, it can and will get better.

[Jaye]

I have had a terrible time with so-called brand-name Sinemet these last few months. It only beats generic by a hair. The worst hour is the first hour, yes. Dosage varies so much I can't stay on or sometimes even get on. I was doing really great with lots of exercise. Now I'm weepy, nasty, and lazy--well, I feel that anyway. People say I'm not so bad. Quality of life absolutely sucks. I exercise anyway, but it doesn't seem to help. Balance is terrible, I twisted a hip doing the dyskinesia waltz. But I don't mean to complain and life is good, right? Well it is, better than most.

You know what? This would be a good start for a letter. Consider the following from rxlist.com:

Report Problems to the Food and Drug Administration

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

Jaye

[Bob Dawson]

Jaye
you describe exactly what I am going through right now.
Of course it is all "anecdotal" and therefor invalid for discussion.
If I could find 4,000 PWP with chain saws and 4,000 people with placebo chain saws, I could get my winter wood cut and be scientific at the same time. But if it's just a small number of PWP falling apart since they deliberately closed down a sinemet production line.... it's all co-incidence. nothing to see here; move along. You have a chemical imbalance in the brain. It has nothing to do with you.

[lindylanka]

My sinemet, old style yellow branded version, never comes from the same source and is packed differently, comes from all over the place. Italy spain etc. Sometimes I can only get hold of half a prescription and then the pharmacist owes me.

I do not come on the way I used to , takes about an hour or so, depending on which batch it is. Have had problems for a while. Trouble is with PD you are never sure what is what......................... Others have said to me it is now taking an hour to come on when it used to be quicker...... most of them in the US.


At the height of the sinemet shortage here I had what I call a 'bad' batch, very short on, I remember posting about it being like the difference between a good wine, and some rough plonk. MSD offered to test it, and after several months sent me a terse email saying that there were no problems with it.

It made me wonder exactly how they do test a drug like sinemet. If you can mix a cake with the same ingredients and get different results, does that hold for medications.......

On a different note there was a Guardian or BBC report on drug shortages not long ago, perhaps 2 weeks at the most, which included PD medications. If I can find it I will post it here. I do not think that drugs are now distributed in the way they were formerly, and if you are on a generic version then you may get one of many different unbranded versions. Despite what the manufacturers say they are different, and doctors know that and are often prepared to stipulate that you get the one you are used to.

[tremorgrrrl]

There a a whole host of factors that can affect the quality (and therefore reflect the variability) of generics. These factors include:

Shelf life (some ingredients may be old)
Quality (80-90% of generics are produced outside the US in plants that are not regularly inspected)
Bio-availability
Bio-compatibility
Bio-equivalence (generics must be within a 20% range of effectiveness of the brand name drug)
Variation in active ingredients (generics can vary up 7%)
Variation in inert ingredients

With all that, it's a wonder we are doing as well as we are on whatever it is we are actually taking.

Tremoirgrrrl

[paula_w]

before going on name brand, i used teva and purepac- Teva doesn't work. i switched to name brand but its a $70 co-pay. the name brand doubled the amount of copays i have. i can't justify that in my own mind and i'm a spender. it does work more smoothly for me but not any longer of an on. name brand supposedly has a 'new ingredient'.

[soccertese]

teva 25/250 works great for me. i avoid all food and supps before taking, kicks in in about 30min and lasts 2-3 hrs.