I am starting to wonder if my on/off extreme motor fluctuations are due to the various manufacturers of generic Sinemet. I am contemplating whether to ask my doctor (movement disorders specialist) to prescribe me the brand name version of Sinemet.
Has anyone else experienced a difference in the response to brand name Sinemet if you have made a switch? Thanks.
🧐 interesting question. I think it's all the same when it comes to tremor. It's the most difficult symptom to control. I don't find the different manufacturers make a difference.
I have found that all generics are not the same when taking them and how they control my symptoms. For instance i was taking the generic brand C/L made by Mylan and i was doing great then my pharmacy switched to another name brand and i have had troubles since then,They swear they are all equal but i say NO!
Thanks. Interesting. I was also on the Mylan brand generic and did well. The new pharmacist switched to Actavis and things have gone downhill.
see i am not crazy lol
I wonder why we cant have the brand we want?
That is why I am going to ask my doctor to prescribe name brand. Incredibly, it's harder to get the preferred generic!
It doesnt make sense that we couldnt request it from the pharmacist and they give it to us! I have such a high copay for brand name and i dont get why we cant request what works! Darn it 
I think you will find it's all about cost!
I actually called a small independent pharmacy and they are going to get me the mylan brand of the generic C/L ER CVS said they couldn't get it lol oh well moving on to someone who can
Hi RS313 do you get your med on prescription or do you have to pay.
I get mine (Sinemet plus ) from my Dr on prescription but our NHS here in the U.K. Tends to give out the cheapest option as there is such a demand on our health service these days with people living longer.I agree with you totally that the generic drugs are not the same even pain killers like ibuprofen & paracetamol do not do the same job when using generic or pharmacies & supermarket own brands.
Yes i get a prescription for them.I have not used the name brand but i have had good results from the Mylan generic brand of C/L CR then my pharmacy closed and i had to go to a large corporate pharmacy that changed it to a different manufacturer and i went down hill.They swear that all manufacturers are the same but i know that to not be the case.I have since found a small independently owned pharmacy that will get me the ones i want so hopefully now i can get some symptom relief.
Good luck with getting the ones you want, I've just put in for a repeat prescription but it will be hit or miss which one I will be given , I think I will check before I leave the pharmacy and insist they change it if it's not the right one!
try a small private pharmacy and ask if they can get what you want.most will help.large commercial pharmacies wont
Thanks but the trouble is the pharmacy will only dispense what the Dr prescribes.
Oh so its your Dr that is the problem? Well she/he should be willing to prescribe what works for you that is the problem with so many Dr's they dont listen to us!
@RS313 My pharmacist says I can switch back at any time - just say the word. I thought I’d see if I definitely felt a difference first. The new manufacturer is Sun Pharm.; before I had Mayne. I think My tremor is more pronounced with Sun.
Sun is what i was switched to also and it has been horrible.They must be a bad manufacturer or something because i have seen alot of people that didnt get good results from the C/L
@RS313: My pharmacist says they do use identical formulas in both; however, there could be something different in the binders they use.
So would the binders have anything to do with the way the med works? I am not familiar with binders. what are they?
I’m thinking it’s whatever product/chemical they use to bind (glue) the powder/medication into pill form. (My wording. I’m sure there’s a much more scientific explanation!)
That makes sense well whatever it is it sure makes a difference on how the medications are dispensed in the body and it effects the way it covers my symptoms.TY for the relies Cjbro2000
Glad to know I’m not the only one with this problem!
Thats why we have each other on this group so that we can compare stories and to also confirm that we arent all crazy lol. I really believe that as much as the Dr's want to help us until you have Parkinson's you just dont really know what we go through.They are book smart but we are the real deal.we live it everyday and we are all different with different symptoms meds and stories.
Absolutely they are not the same. I was on generic SUN manufacturer and was doing great and then was changed to Activas as well and it was as if I was back at day 1 , six years ago. I did some research on the different generic brands and there are different additives. The SUN manufacturer actually has an additive that makes it more water soluble and my body reacts faster with it. Don’t let anyone tell you they are all the same! I am an ultra runner and went to several pharmacists asking if they can order the one I want. I was even given a response of, honey, maybe your disease is just getting worse and your not excepting it , the meds are the same. 😡 I came close to pulling her down by her ponytail. I since have found a pharmacist that says several people are sensitive to different additives in generic medications and that may make things different. He has a list of people that request certain generic meds and I’m one of them . He orders my meds from the manufacture I want every month. He said any good pharmacist should do that , but we all know they don’t. Don’t give in because you know your body better then anyone else. Demand the manufacturer that you want. Take care . Karen
I read your reply to my husband & he said "Is that something you wrote?" I am in the same predicament. My pharmacy chgd my c/l to something other than Mylan (tried 4 different mfgs) & there was a big difference in symptoms. It happened a few yrs ago but I was able to get the Mylan mfg ones in just a couple of weeks & my symptoms improved. This time it's been 4 months. Some don't think there's a difference but I know there is & I had 2 neurologists & a pharmacist tell me it happens more often than you think. I have talked to Mylan & they told me they are on backorder until May 23rd. I had done some research & their plant in West Virginia (not sure if it's the whole plant or part) didn't pass the FDA's inspection. I saw something else that said they may do a restructuring & lay off some people and or quit making some of their meds.
My pharmacy said they could get it but it was going to be on back order until may/june after that.She said there was 2 bottles and she would get them for me. I am not bale to fill my RX yet because i just got the other one (the bad one) already so i have to wait two more weeks 
Hi RS313. I found a way out of this mess. I met with my MDS doctor this Monday and he finally prescribed me Rytary. I will start taking it tomorrow. I am excited about the prospect of getting better control with a newish brand name medication which is essentially a combination of short acting and long acting Sinemet. There is no generic version of Rytary, so hallelujah! The only thing I had to do was going through the insurance formulary exception process which is easy to get because there is no alternative. Out of pocket, I think it is very expensive.
My Neuro Dr did mention Rytary to me as well but i have some mixed feelings about it because of my dyskenesia please let me know how you respond to it please ok? thanks for the reply malayappan
Sure, will do. I have terrible dystonic dyskinesia. I am going to hope😇. BTW, Rytary has a robust assistance program as well. The first three months can be free for you if you contact the company. Then, they offer more assistance. Just give them a call.
What is dystonic dykenesia? I am still new t9o the parkinsons thing so i dont know much but i do know i have had it since almost day one! If i decrease my meds i get tremors bad and if i increase it i get dykenesia which is so painful and i am not sure i am getting it because i am on too much i am on a very low dose of meds
I have dystonia and dyskinesia together! So, I have uncomfortable, uncontrollable movements as well as twisting of the foot, high step marching with the right foot and even heightened tremors during the off ramp period when I am getting to the end of the dose. I need 3 25/100 tablets every 3 hours. At about 2.5 hours, the dystonic dyskinesia starts and I am miserable for about an hour. I take my next dose at the 3 hour mark, so the doctor said that I am dealing with the medication ramping down and then ramping up.
Rytary is supposed to fix that by supplying a steady dose so that what I am experiencing doesn't happen anymore. I hope that will be my experience. Keeping my fingers crossed.
BTW, my dystonia started before I got diagnosed with Parkinson's. Dyskinesia also came soon after. Parkinson's disease is a tricky one.
WOW that sounds just like what i have! i have the wonky high step foot on my right side too. My dystonia and diskenesia are not too severe yet but very bothersome and sometimes painful.I have never been told of this before you mentioned it to me My neurologist thinks i am doing great she always seems to not understand my complaints i think she isnt very aggressive sometimes
Hang in there. I think the doctors only know so much about the disease. Sometimes, the treatment is worse. If you can, try John Pepper's protocols for walking. It's been helping.
hey there,
Just checking to see how the Rytary switch is going?
Good morning, RS313. It's actually going quite well. However, it has been only a couple of days since I have been taking it. The insurance formulary exception was required through the process of prior authorization and approval which took a couple of days. Then, the pharmacy took another couple of days to procure the medication because, understandably, it is not something that they keep on the shelf.
First, the good news. I was under great anticipation after the first dose in the morning at 5:30am and waiting for the next dose at 10:30, and I could literally do anything else, except wait. To my surprise and relief, I had none of the dystonic dyskinesia that I dread every time the Sinemet dose wears off. Then, I had the second dose of the day and everything went smoothly. Then, I had my food (breakfast) and went about my work and waited for my third dose at 3:30pm. The medication is prescribed at 4 or 5 hour intervals and the doctor chose 5.
At 2:30pm, a mild tremor came back in the right hand, the same thing I had at diagnosis 7 years ago. I was surprised that it came back sooner than the next dose, but I have read reviews online that said that Rytary is sensitive to food. You cannot have food within two hours of the dose according to the doctor, but the manufacturer says it only applies to the first dose. Yet, their literature is misleading. Buried in the documentation, they say the same thing as the doctor. For peak absorption, the stomach must have two hours to digest the food and the stomach must be empty.
So, I waited until 3:30pm, and the tremors grew worse, but the dystonia and dyskinesia did not come back. What a relief! I never thought I'd be grateful for just the tremors with nothing else to add on to the misery! I had more food and the dose wore off at 7:30pm. That was the end of the first day. I have been prescribed only 3 doses per day.
The doctor said that he would be adjusting the doses for the next three months till the optimal dose was reached. So, we have ways to go. If I can get a tremor free, dystonia free and dyskinesia free 8 hour work day, eventually, I think I can manage the rest of the day without issues. I am hopeful.
Hope this information helps.
Ramesh
well i am so glad to hear that it is going good so far.I will pray for you that it is a great success and that you are able to get through at least your work day with no problems! TY for the update and i will be watching for your updates have a great day Robyn
Thanks, Robyn
Hi Robyn, I have an update on the other thread regarding my experience subsequently. Please read that. Yesterday did not go so well!
According to my previous neurologist generics are not exactly the same as the brand and can fluctuate in potency. Bioequivalence. Manufacturers must conduct studies to determine whether their version is bioequivalent to the original drug—that is, that the generic version releases its active ingredient (the drug) into the bloodstream at virtually the same speed and in virtually the same amounts as the original drug. In order to determine bioequivalence, a randomized, crossover trial is conducted with both the generic drug being assessed and the brand-name drug as the control. In these studies, a number of pharmacokinetic (PK) parameters are assessed, including maximum serum concentration of a drug (Cmax) and drug exposure over time (AUC).1
These parameters help assess how the rate and extent of the availability of the generic drug compares to the control. As the FDA requires, there must be no significant difference in the rate and extent to be deemed bioequivalent.
It’s true that the PK values are required to fall between 80% and 125% of the reference value in these randomized, crossover trials. More importantly, however, the entire 90% confidence interval (CI) of the observed PK value must also fall between 80% and 125%.
As a general reminder, CIs are ranges of values we can be confident the true result falls, which in this case is 90% of the time.
To explain bioequivalence with an example, imagine that a brand-name product was shown to have an AUC of 100 units in a crossover study. In the same study, let’s say the generic product was shown to have an observed mean AUC of 93 with a calculated 90% CI of 84-110. Because the FDA requires the mean AUC of the generic product as well as its entire 90% CI must fall between 80 and 125 units, this would meet the bioequivalence requirement.
Of course, this is a very simplified explanation. In reality, multiple PK values are being assessed based on ratios of the generic and reference drug, and CIs are being calculated around the observed means. The key takeaway is that because the entire 90% CI has to fall within the 80-125% range, the actual PK values of the generic drug must be very close to the mean PK value of the reference product.
Using the statistical criteria required by the FDA, it would be difficult for any generic product to differ more than 10% from the reference to meet the CI requirements, and it would be nearly impossible to meet the CI requirements if the difference approached 20%.
According to 1 FDA study, the mean difference for AUC values between test and reference products was found to be 3.5% in the 2-year period following the Waxman-Hatch Act, and 80% of the absolute differences between generic products approved since 1984 and the corresponding innovator products were within a 5% range.2
Where did the specific limits of 80% and 125% originate from? According to the FDA this is based on a clinical judgment that a test product with bioavailability that falls outside this range should be denied market access. A 90% CI is used, since a 5% statistical error is allowed at both the upper and the lower limits. Therefore, the total error is 10%, generating the 90% CI.
So, yes, there can be differences in potency.
Merck currently is not manufacturing Sinemet because of a problem with getting ingredients from a third-party supplier and may not have new inventory until after 2019. I have been unable to find any in Atlanta.
I’ve had my suspicions.
I had trouble from November 2018 until March 2019 getting Sinemet, was given a generic and my tremor got worse and I lost my sense of smell and had a few loss of balance issues. Now I am back on Sinemet the tremors are a lot better but smell and balance haven't improved.
Has anyone tried kinson brand? It is the one on the New Zealand list and I think the one we are getting now.
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