I have had a few inquires about the difference between name brand Parkinson’s medicaitons and their Generic form recently, so I thought it would be a good time to repost my blog about my experience. Enjoy!
This last week, I had a ton of medication fluctuations… ok, maybe not a ton, but the inconsistencies were annoying. I tried to go over in my head if anything had changed… diet, exercise or my hairstyle? But because I am a smart cookie, I know that sometimes my Parkinson’s is just going to be a jerk for no logical reason. So I just dealt with it, until one morning when I reached into my Sinemet bottle to fish out that familiar yellow pill and to my surprised, the pill had shrunk! Or I had gotten bigger. Knowing that I’m not in wonderland and I didn’t just devour a piece of magical cake that has the words “eat me” on it, I knew something was up.
I dumped the contents of the bottle onto my desk to investigate. To my amazement, my pharmacy had filled my generic Sinemet prescription with pills from 2 different manufactures… Teva and Mylan. I guess they believed that since they are both the “same” medication, it was alright to mix them. This reminded me about a blog I wrote about my previous experience with generic medications. I use the analogy of name brand designer jeans to generic off-brand… you know, to make it easier to understand.
I have always loved “True Religion” jeans. The way they form to my body and accentuate all the right curves, while minimizing my fluffy parts…. yes, every girl has parts they would like to hide. These slacks are God’s gift to women. Now if you would like to attempt this level of hotness, you will have to fork over 200 clams or more if you choose to have your rump bedazzled with crystals…. what girl wouldn’t? But for many reasons, a new pair of “True Religion” jeans are always out of reach. So what is an alternative? If you shop around, you can find some pretty decent jeans for any body type. I can tell the difference with generic jeans and I don’t prefer them over my name brand, but some people may not want jeans with crystals that cost more than a paycheck, so they choose to have a less expensive alternative. But are they really the same quality? I guess it depends on what manufacturer makes the impostor jeans, what type of fabric was used, or what of style they are….my brain hurts.
To get to the bottom of this jean conundrum, I will use my personal experience I had this week while switching from my name brand Parkinson’s disease medication “Stalevo” to its generic form. I have never given much thought to the difference between the two forms of drugs and the fact that the generic are cheaper is always exciting, especially when you go to pick up your prescription from the pharmacy. But this week, this naive girl was taught a life lesson. Throughout the week, I had noticed my Parkinson’s symptoms had gotten significantly worse. My medications appeared to have forgotten to send a memo to my body about its upcoming vacation. I struggled all day with symptoms; people were even mentioning my slowness of movement and my expressionless face.
I tried to make it through the day by forcing my body to swing my arm when I walked, speak with an audible tone, and control my rigidity. But I was failing miserably attempting to look normal. On top of the emotional hell I was enduring, I was struggling with pain; a feeling that I couldn’t get comfortable whether sitting, standing, or lying down. I completed my day and walked slowly to my car, smiling at people passing by. As I got into my car and closed the door, tears began to stream down my face. I thought to myself, “how could I continue feeling this way everyday?”…..the reality hit, this is how bad it really could get.
After a couple of days struggling to maintain my sanity, I sat down with my Neurologist (who is also my boss….bonus!) and shared my challenges. After a few questions, he had come up with a reason I was feeling like dog poo. I had just recently switched from the name brand “Stalevo” medication to its generic form, to save money. He stated that he has heard from multiple patients that the generic form was not effective for controlling their Parkinson’s. My mind was blown! Or what is left of it.
When I did my own research, I came across this quote from CNN that was describing the FDA’s guidelines when determining the bioequivalency of a drug, “A generic’s maximum concentration of active ingredient in the blood must not fall more than 20% below or 25% above that of the brand name. This means a potential range of 45%, by that measure, among generics labeled as being the same.” This means that the medication that I felt somewhat stable on, has now been changed into a substance that which I have no idea how my body would react to, and this is all without my knowledge.
I know that there can be many benefits to using a generic medication. My frustration comes from not knowing the potential that these medications can have. It was almost as if I had bought an awesome pair of “True Religion” jeans from a friend, complete with hot pink crystals. When I wore them out for the first time, I noticed that they didn’t fit the same as my other jeans. Not only did they not embrace my curves, but they put a huge neon sign pointed right at my fluffy muffin top. Could it be possible that I had bought a fake pair of jeans? They looked the same, but something was off.
I paid less for the generic jeans as did I with the generic brand of medication, but it was obvious that they were not the same. The fake “True Religion” slacks, just like the generic medication were created by multiple different manufactures, which altered how the looked and felt on me. Now I am not saying that you should be afraid to try the generic medications, because just like jeans, they will all fit differently depending on our individual body types. I thought it was important to share this information to make people aware. Now if only we could get the FDA to oversee the production of Denim Jeans…
Thank you for this information my pill refill has different numbers going from 539 on one side and an R on one side yellow round pills to 721 on one side yellow round pills. Not sure how these will work yet.These are Carbidoba/Levodopa
According to some of t he research I have done the manufacturer of Stavelo for Novartis is based in Finland. The Finish manufacturer also I believe manufacturers a generic. Do you have any input about Orion’s generic being same/equal to the brand name?
Generic vs generic!!! Vs “the real thing”!!
For instance my original endo dr said no generic for thyroid only as prescribed
It was shocking to know that the generic can be off by 45%.
Jean, Scary huh?
hello all,
My Gait and walking has been very poor recently. My sinimet has changed in shape and in colour. After reading the articles I plan to check this out tomorrow if it is generic or not..thank you for the info.
So glad for the confirmation. I’v been confronted by Doctors or Pharmacists telling me that “generics are the same as brand”. I solved part of the problem by asking that an RX be filled by the SAME pharmaceutical manufacturer EVERY TIME. Then I’ve insisted that certain medications be by Brand only for myself and my mother. At 96, the insurance company insisted that she try 8 different generic brands before they would give her the brand. It was Lexpro. With dementia I was afraid because she couldn’t articulate any problems and angry that they would subject her to the taper off several medications that I knew would make her feel terrible.. I did, as you’ve suggested, had her Doctor write a letter. It worked although the co-pay is still high. I’ve found that this letter needs to be written every year for my mom, so it has to be done with a long lead time. Worth repeating, and LET IT SINK IN – “A generic’s maximum concentration of active ingredient in the blood must not fall more than 20% below or 25% above that of the brand name. This means a potential range of 45%, by that measure, among generics labeled as being the same.” I can’t imagine how daunting this problem is with PD..
Dianna, I’m happy you’ve had some luck with getting the doctor to write a letter. That’s something that isn’t shared enough. Thank you for the comment!
Thank you for sharing, very important information. I use only generic due to pricing and insurance coverage. Can you tell me if you experience any form of hot flashes. Recently I get them when my generic sinemet is wearing off. Had Dbs surgery in 2016
Margaret, I’m sorry, but no, I haven’t had any hot flashes. But maybe someone on this blog post might have.
I often get hot flashes and heart palpitations when my generic Sinemet is wearing off. I had a full cardiac work-up because I thought my heart was misbehaving but they didn’t find any abnormalities. When I kept a log of the palpitations, I discovered that it coincided with my off-times. Same thing for the hot flashes. I’m guessing that when this drug was undergoing clinical studies, they mostly tested on men (who might not have the same side effects).
Janice, I can relate to the hot flashes… but I haven’t had heart palpitations. Must be pretty discouraging. Thanks for sharing!
Had Parkinson’s for almost two years, Im 71 years old. I took Rasagiline Aristo for over year with good results on my tremor. The all of a sudden the Pharmacy could only get Rasagiline Brown & Burk. Two weeks after switching Brands my tremors got a lot worse. I have tried Rasagilene ratiopharm, and Rasagiline Azile each for a month. Both made by TEVA but the tremor has not improved.
Hi Pete,
If you do better with the name brand, you can try other pharmacies. Call around, you might be able to find it through another source. If it is your insurance company that won’t cover the medication because of the cost, you can have your Neurologist write an appeal, stating that you are not responding to that certain manufacture. Hope this helps!
My husbands dr changed his Simone to
A generic make which seems to have had a bad effect.
I have now managed to get him to change it back to the brand name
But fear a lot of damage has been done because of this mentally.
He started to do strange things
I’m not sure if it was because of the generic make but it was only when they changed pill these things happened now it’s difficult to get him to take the pill as he said it made him feel worse when He was taking generic shows how much people really don’t care.
I asked the dr to change back ages ago and the response from surgery was it’s to expensive now hes changed it.
Damage is done he also wears the Apo
Go pump during the day.
Good luck to u all
I’m so sorry to hear about your husband. People need to be educated on how much small changes in medications can have large impacts. Good luck to you both.
is there any reason to take a generic AZILECT when the insurance co-pay is the same as the Brand Name from TEVA?
IF you are doing good on the name brand Azilect by Teva and the cost is the same, I wouldn’t think you need to to change to the generic. I live by the phrase, if it aint broke… don’t fix it. Hope that helps!
Beginning in the Spring, 2017, my husband was having trouble locating a pharmacy that could procure the name brand Azlilect. We had to call various pharmacies each month to see if they could obtain it, and on one occasion even went out-of-state. Now, it seems the brand name is not available at all. He in his second month of the generic and it does not seem to be working as well as the name brand. We didn’t care so much about having to pay a little more for the name brand (the co-pay was $280 or so for the name brand and say $250 for generic–the problem is now the name brand is not even available. Anyone else our there experiencing same problems? Anyone know why the brand name is unavailable–pharmacists told us various things–distributor problem; manufacturing problem. Seems strange.
Karen,
I haven’t heard that the name brand isn’t available…. doesn’t make sense. Let me check in with the staff at my Movement disorder clinic. I will get back to you.
Karen,
Brand name is available I take brand..but I know is very expensive so many pharmacists are reluctant to buy and keep in stock ..
I’m late to this conversation but new to Medicare — which does NOT cover brand label drugs without going through hell and half of Georgia — or to Canada or the poorhouse. I was doing great on the labels. Now, not so much. 🙁
That’s so frustrating! It’s like the insurance companies feel that as long as we are getting some form of the medication, generic or not, they have done their job.
This is one of the great problems I have been speaking about for years..I truly feel that most people’s dyskenesias are due to not being on the right medications..like generics because brands are not covered I.e. New formulations.
Have awesome day
Or over-medicated… Have a nice weekend!
Have your doctor write letter that brand is medically necessary and may take a month or two but Medicare will cover…covers mine
Thank you Maria! You’re a wealth of information! Hope you’re well!
Thank you..likewise
I have fought this problem time and time again, I have even written about it several times..we need to make a stand ..he of the biggest reasons patients end up in the emergency room or have problems is because of constant changing of medications which may be equivalent but NOT the SAME!! see my blog as well on this topic Defeatparkinsons.com
I will check out you blog post. Super scary how potentially dangerous switching to generic meds, especially without knowing.
It has been three years since my insurer switched me to generic Stalevo. What a horrible fit that was for me. The first generic was a wobbly wonder so I found another manufacturer. The second was even wobblier, if that was possible! I collapsed in a clump on my kitchen floor at 3am. One titanium hip later, I found that the pharmaceutical producer of the real Stalevo had a patient assistance program. Blessings to them! Never since have I been plagued by the not quite the same substitutes. (I take the real stuff with me whenever I am hospitalized, as hospitals rarely have Stalevo in stock.)
That is a good point about the hospitals. That is something easily forgotten. Thank you for your comment!
I always understood that if one had a chronic condition( and I can’t imagine anything more chronic than Parkinson’s) one’s medication was free! Perhaps I should try being grateful that I was already over retirement ave (, though I wasn’t retired and wasn’t thinking of retiring any time soon) when I was finally diagnosed with Parkinson’s .
Although I’m pushing 73 quite hard, I also love your blog, you are an inspiration to me. Before I read your blog it simply hasn’t occurred to e that I could deal with my Parkinsons in a humorous way rather than cry about each new frustration. I have to admit that I sometimes laugh till I cry,which I think is my default position
Jean, sometimes laughter is the best way to keep away those tears, but if you feel like it’s getting to be a problem, don’t forget that Pseudobulbar affect (PBA) can come with our lovely friend Parkinsons’. PBA is when you laugh or then cry for no reason. Or laugh at inappropriate times… which is a normal thing for me! I wrote a blog about it, if you’re interested in checking it out! https://www.parkinsonsinbalance.net/2015/10/laughing-at-llamas/ Thank you for your comment. I am happy to hear my blog can bring you a smile!
Allison, I love your comparison of off jeans to generic sinemet. But what about people who don’t have access to all the options. Like Michael J. Fox who hasn’t had DBS and relies totally on drugs? He struggles with it. I had DBS 5 years ago and it has helped but that is because I couldn’t tolerate myrapex and sinemet. I rely mostly on DBS. I always wonder what if I could tolerate the medication? I love your blog and hope your recovering from the dog park.
Tom, Thank you for asking… Crash and I have physically recovered from our dog park episode, but the emotional trauma takes awhile to process. Yes, when you have a low tolerance for medications, you limit your options for treatment. I am curious if the Duopa pump would be an option. Because of the way it’s administered, maybe it could help. I am actually going to ask the our pharmaceutical rep next time I see her. Here is my blog about the Duopa pump, if you’re interested. https://www.parkinsonsinbalance.net/2016/02/2394/
OK I am now off of Cymbalta and Requip, man I am still going through the withdrawal of the both of them. Holy Mother Mary of God, I feel like i’m going crazy!!.
So what companies for which meds. i am on Simonet, Amantadine and Baclofin, Klonapin, any suggestions? I am really scared of what’s going to happen when they are both really out of my system. I’ve actually feel like I’m going crazy right now, getting over this detox. Would love any suggestions-cindy
Why did you go off of Cymbalta and Requip? Where you having negative side-effects? Did you go off both medications at the same time? Did you slowly decrease the dose until you were off, or did you stop cold-turkey?
Gen vs brand..I fight this all the time. Insurance companies insist they are thesame..they ARE NOT. I insisted to the jpharmacist to use a particular mfr. It took awhile and huge frustration but succeded. The patient is the one who knows what workks and the customer. Love yr blog. Should form an assoc to speak out for us. Having park is not easy
Happy to hear that you like my blog! It’s so frustrating to jump through the hoops that the medical companies make us jump through!
I have had experience this dilemma. I have notified my pharmacy the exact companies that I want my medication from. I get my Carbidopa Levadopa from MYLAN . And I told them thats the only company I want it from. The others didn’t work as well for me. So when some one new starts working at the pharmacy and doesn’t see the notation and I get the wrong generic pills I am on the horn righ away and take them back. There is a big difference in generics. No reason to suffer if you know which brand works best for you. The pharmacy is probably getting a deal from their supplier and using the other one.
I cannot believe it Allison I just realised this may have happened me too! What do you think re the following?
I received 3 different batches of Azilect.from my pharmacy which I have been taking since the 15th March.
Azilect 1mg tablets, rasagiline, TEVA. Reva Pharma GmbH
Rasagiline 1mg tablets, Rasagiline Tartare, Caduceus Pharma Ltd.
Rasagiline ratiopharm 1mg tablets, rasagiline Teva B.V.
To my understanding Azilect AKA Rasagiline, doesn’t come in a generic form. The pharmaceutical company that produces it is Teva. Now keep in mind, this is only for the United States.c If you are out of the country, across the pond, you might have a generic form of Azilect available. I would check in with your Neurologist to confirm.
Thanks for the info. I take rytary which doesn’t have a generic equivalent thank goodness! Of course the consequence is you pay more 😟
Just when you think you have something figured out, eh?
Isn’t that just how life goes?