The article linked below describes a PwP who had his medication switched from brand name (Sinemet) to generic carbidopa/levodopa (C/L) and how this exacerbated what had previously been well-controlled Parkinson's symptoms.
The same thing happened to me recently and I spiraled down into the Parkinson's abyss - right after Thanksgiving. My symptoms significantly worsened and my "on" time was only lasting 2-3 hours (previously I would get about 5 hours of "on" time between C/L doses). After panicked calls with my neuro as well as a UTI test (it was negative) I worked back and determined that I had been on a new generic C/L for about two weeks prior to my worsening symptoms. I remember the pharmacist telling me the generic manufacturer was changed but I did not think much of it and how wrong I was. I found a pharmacy in the area that had my "old" generic C/L (Teva) and once I was on this for about 3-4 days I started to feel like my old Parkinson's self. I am not back to where I was prior to this change and I have accepted that I may have a new baseline but the change in medication really turned my life upside down.
I just wanted to post this for awareness.
Written by
Canddy
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I have had a similar situation. When I asked the pharmacist if they changed my medicine he said they fill the scripts from whatever source is available at the time of refills. He said they are exactly the same. I disagree. When I first started on c/l the container had Sinemet on it and got refilled every month. The last refill was for months and I don't think it's working as well. They increased c/l to 4 times a day and I feel no better. This is the 3rd day. I'll try for a week and if nothing changes I will contact my neurologist. Currently on 1 c/l (25-100)every 6hrs. Please advise. Thanks
I have found the same - Teva brand worked so much better but the pharmacy disagrees and refused to dispense the Teva version - currently down from 5 hours of on time to 2-3hrs (and the off is like going off a cliff) - hope we all find a solution soon
I have found this too. My doctor said it has to do with the fillers used, not the medication itself. He writes my prescription for TEVA brand only. 4 out of 5 times the Pharmacy fills it wrong and I refuse the RX, telling them they have to fill what the doctor prescribes.
I think if your doctor writes the RX for Teva, the pharmacy cannot refuse to dispense.
My chemist constantly changes my supplier of cocareladopa. when i said sinemet works best they told me they are all the same. like i didnt know how my body felt on the different manufacturers products, the problem is on the NHS you get what your given.
Canddy, I've had a very similar experience. (I live in the U.S., but it sounds like the U.K. is having a very similar problem.) According to the U.S. FDA (Food and Drug Administration) rules:
"Any generic medicine must perform the same in the body as the brand-name medicine. It must be the same as a brand-name medicine in dosage, form and route of administration, safety, effectiveness, strength, and labeling (with certain limited exceptions). " fda.gov/drugs/frequently-as...
As long as the above is supposedly achieved, a pharmacist can refill a generic prescription with any manufacturer, unless the prescription specifically states otherwise. However, in the U.S., if a patient has a bad experience with an individual manufacturer, they can call the pharmacist and request that in the future, all their refills should come from XYZ manufacturer, or at least not come from ABC manufacturer. About 6 years ago, I got a carbidopa/levodopa refill from a new generic manufacturer, Sun Pharma. Every dose I took of this refill made me feel like I wanted to crawl out of my skin. This went on for 4 days until I called the pharmacist and said I wanted a replacement refill from a different manufacturer. He complied and gave me a replacement refill from Actavis. Actavis worked well so I requested that all my refills come from them. This worked well until my last refill a few days ago, which came from TEVAusa. My symptoms were exacerbated immediately, and I also developed some new symptoms. Both legs and feet started to feel like mush all the time. This had never happened before. Also, I had dystonia in both feet (before this, I had only occasional dystonia in my left foot.) For two days I could barely walk. It was frightening.
When I started investigating, I was told that TEVAusa bought out Actavis, the generic that had worked so well for me for several years. And judging by my body's reaction, the TEVAusa recipe is not the same as the Actavis recipe. So, I have no choice but to hunt for another acceptable generic manufacturer.
Additionally, I've been told that the brand name Sinemet is no longer being made in the U.S. and that no other company has stepped up and started making the brand name again. So, again, I have no choice but to hunt for another acceptable generic manufacturer.
A nurse at my doctor's office told me that the state of generic drugs in the U.S. is at an "all time low". For instance, a generic manufacturer's pills don't have to have the exact same amount of drug as the brand name in 100% of the pills. As long as they have the exact same amount of the drug in X% of the pills, the FDA finds that acceptable. And, I'm wondering if the FDA allows other differences that end up adversely affecting PwP.
Can anyone shed more light on the process I've described above?
Does any one know if the FDA is aware of the sometimes devastating problems brought on by the switching of manufacturers?
I know the FDA has an adverse event reporting system for drugs and that pharmaceutical companies and manufacturers have to provide the data on the adverse events/reactions that they receive. However, this is a passive system and depends on patients/medical professionals/pharmacists to report these events. The companies receive the event data and put it through their internal review and vetting process and determine what is reportable to the agency (FDA or country/region equivalent). I believe this is a global system. I have not delved into what the agency does with all of this data.
Below for example is the link for reporting adverse events for drugs made by Sun Pharmaceuticals (which includes generic drugs):
I started with C/L by Actavis then was given TEVA. Within 3-4 days I was doing very poorly. I talked to my pharmacist and she gave me a different C/L made by AVK. Within 24 hours I noted improvement. I have since attempted to take TEVA again just to be sure and it definitely does not work for me. But we are all different.
I too experienced less efficacy with the Sinimet generics. Merck took the brand drug off the market and I was given the run around trying to find out what happened. Being at the mercy of big pharma , we are all in deep stuff since w e rely so heavily on our meds. I wrote this blog below in 2019 and some of the links may not work, but I think you can get the idea….
As I replied to Cbas, have your doctor prescribe the brand that works best for you. Your insurance probably charges more for Sinemet, but is worth it if effective. I have found generic Teva brand works well for me. My doctor writes the RX for Teva only.
Hi. I had a similar experience about 4 yrs ago. I was taking C/L mfg by Mylan and the pharmacy changed it to Sun. I didn’t realize the reason I was going downhill until a few months down the road. During the horrible journey I started shaking all over from my head down to my toes. My meds would only last 2 hours at the most. I was terribly depressed and didn’t want to leave the house for anything. It’s a long story, but I finally figured it out and now my doctor writes a prescription indicating to fill the prescription be Mylan. I also had my pharmacy note that in my records. Both my pharmacy and the doctor told me that could happen. Take care and keep fighting! 🥊
A generic drug is a medication with the exact same ACTIVE ingredient in the same amount as the brand-name drug, is taken the same way and offers the same effect.
They do not need to contain the same INACTIVE ingredients as the name-brand product and they can only be sold after the brand-name drug's patent expires.
That means the majority of people do OK on generics but a few don’t tolerate the mixer which in most cases would be fillers such as starches, colouring agent, etc. or the pills action is changed by the differing interaction of the ingredients.
So this report from Hearsong of a nurse in a doctors office sounds like she was giving her opinion not fact and she was wrong
A nurse at my doctor's office told me that the state of generic drugs in the U.S. is at an "all time low". For instance, a generic manufacturer's pills don't have to have the exact same amount of drug as the brand name in 100% of the pills. As long as they have the exact same amount of the drug in X% of the pills, the FDA finds that acceptable. And, I'm wondering if the FDA allows other differences that end up adversely affecting PwP
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