Sinemet Has Left the Building
Graphic: Jean Mellano
A recent Merck product status report shows that Sinemet 25-100 is on backorder, with no current availability date. I have been on Sinemet 25-100 for almost a year now. When my pharmacy called me to say there was no more Sinemet for my refill, I was devastated.
Generic carbidopa/levodopa (C/L) had made me nauseated when I’d tried it in the past, so my neurologist prescribed the brand name Sinemet. It took months of trial and error to find the right dosage and timing for my current “cocktail” of Parkinson’s disease (PD) medications. (I also am on the Neupro patch (rotigotine). Now, it seems I may be back to square one.
What do I do now?
Currently, under my doctor’s guidance, I am rationing my remaining Sinemet (two in the morning) and taking C/L (two in the afternoon) to ease myself into all generic. Thus far, I have had no nausea; however, I do believe my energy, balance, and fine motor skills are deteriorating. This could be because of disease progression, or perhaps, it could be due to the generic not being as effective in terms of absorption as the brand. I am back to trial and error to figure out what works for me.
In the United States, the FDA indicates that it is acceptable for a generic drug to have up to a 20 percent difference in absorption rate than the brand-name medication.
Note that symptom relief can also vary among generics, and there are several companies that manufacture C/L.
Crisis is opportunity
“When written in Chinese, the word ‘crisis’ is composed of two characters. One represents danger and the other represents opportunity.” — John F. Kennedy
Kennedy’s words, while not strictly accurate, make a good point. In light of this Sinemet shortage, I am trying to reframe how I view its impact on me. I am choosing to believe this may be a good thing, as I will now explore three other treatment options.
1. Getting another opinion on my situation through a no-fee telemedicine consult.
If you have PD, live in New York, and have internet access on a computer or tablet, you may be eligible for a no-charge telemedicine consult with a movement disorder specialist.
2. Registering for PD summer school in August 2019
This is a five-day conference at Bastyr University’s Seattle-area clinic, and it is focused on improving PD outcomes. From what I have seen on the website, most of the instructors are naturopathic; however, some are also traditional MDs.
3. Trying infrared light therapy (photobiomodulation)
A few months ago, an Australian friend shared a video link with me about Max Burr, a man with PD who has experienced positive results from infrared light therapy. Burr is also mentioned in a news article about what is happening with infrared light therapy in Australia. John Mitrofanis, a researcher at the University of Sydney, used red lights on mice with induced PD. The animal trial found the light stopped the nerve cells in the mice’s brains from dying.
After I contacted Mitrofanis, he referred me to an Australian medical professional who was doing extensive work in creating infrared light therapy devices for humans. Her website and blog have a lot of useful information related to infrared light therapy.
I found two other promising articles about infrared light therapy, especially for treating some PD symptoms. They are:
- “Turning On Lights to Stop Neurodegeneration: The Potential of Near Infrared Light Therapy in Alzheimer’s and Parkinson’s Disease“
- “Near Infrared Chronic Intracranial Illumination for Neuroprotection in Parkinson’s Disease“
I started this therapy at the end of May. I plan to write an article in a few months describing my experience with this treatment.
Although full clinical trials have not been completed on this therapy, I am encouraged by what I have seen. In 2018, the article “Exploring the use of transcranial photobiomodulation in Parkinson’s disease patients” was published in the peer-reviewed, open-access journal Neural Regeneration Research. It established a positive tone regarding the treatment.
Apparently, there are no side effects, and the treatment is noninvasive. My neurologist gave me his blessing to try it. I said to myself, “What have I got to lose?”
Perhaps the backordered Sinemet situation may be the best thing to have happened to me.
***
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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Comments
Pamela A. Cota
At a recent dinner of Fund a Fellow at the Georgetown University Neurology Dept. The announcement was made : That indeed the anti-leukemia drug " nilotinib " an FDA approved drug for leukemia sold by Novartis, now a Repurpose drug discovered by Dr. Moussa (researcher )and Dr. Pagan has proven not to be a cure or a treatment but it STOPS PARKINSON's from PROGRESSING IMMEDIATELY ! This is after two trials done at Georgetown. The next step is approval from the FDA and finally the Insurance Companies to cover the drug for everyone. All of us who have Parkinson's stood up at the dinner and cheered, clapped and shouted ! This means that if you are in Stage 2 of this disease you will remain in stage two and because of this drug you will not get to stage three of Parkinson's!
Hi Pamela, i saw this article that talks about this find.. http://parkinsonsnewstoday.com/2019/03/15/leukemia-treatment-tasigna-improves-brain-dopamine-use-in-parkinsons-patients-trial-finds/
I wonder how long it will be until it is available. Thank you for posting this..
M. Güney Senol
Hi,
There is a similar situation in our country. One turned out, was a loss! Nas not been on the market for about 8 months. Generic products do not produce the same effect.
ugh, you r so right about generics. I am struggling with them... what country are you in?
Manuel Fernandez
Dear Jean,
Maybe there is a sign of hope if we look at a similar problem we had here in Italy. The Italian Ministry of Health has an official body in charge of monitoring conditions of availability of fundamental medicines, Sinemet being one of them. As soon as conditions of shortage became evident the Italian Association of PD patients made strong representations to the Ministry and in these days the Ministry has announced that Merck has sorted out the problem and Sinemet is being distributed to all pharmacies. I had no difficulties in getting my monthly supply yesterday. I so much hope that the same shall happen in your state.
Thank you Manuel for this info. It is my opinion that no one in the USA can stand up to Big Pharma. They march to the beat of their own drummer. There are also too many lobbyists in Washington DC. I can only hope that this is resolved here in the USA soon or perhaps I might find something else that works better.
Maybe I need to go to Italy? :-)
Susan Glassow
Jean, thank you for your column. I too was devastated to be told Sinemet was not available in the US. I have taken this drug for almost five years and it worked really well!
I've tried two generics, both of which leave me with no relief from symptoms four hours out from the dosage. I am trying Stalevo but it too cuts off at about 4 hours out. What this means is that if I take a dose at 6am by 10am I am feeling tremors and lack of coordination. I take another at noon...four o'clock brings the same ill feeling and so on. We live about an hour from Eugene, Oregon, and I go into town for PD exercise, shopping etc. It's truly difficult to plan driving with the drugs wearing of so far ahead of the next dose!
I am so discouraged! Maybe I need to go to Italy?
susan, hang in there. this is not the first time merck has done this... see my blog: https://slippedawayblog.wordpress.com/2019/06/16/sinemet-shortage-the-silence-is-deafening/ the facts in my blog blew my mind. apparently big pharma does this all the time with no consequences, and not just for PD drugs. i am working with my local congressional representative to see what he can do about getting sinemet for me. the generic still does not cut it for me.
Sinemet indeed has left the building in Australia. An Aussie passed this on to me from Merck Australia (MSD), dated February 2019:
https://s3.amazonaws.com/CTI-GDAM/TEST/Australia/sinemet+URL+Supply+Notice+.pdf
"Unfortunately, the supply shortage of all SINEMET presentations continues due to a manufacturing
constraint with a third-party contractor, that has yet to be resolved. MSD in Australia is attempting
to address this critical situation, but we believe the likelihood of receiving more stock this year
appears low.
Patients are encouraged to talk their doctors about alternative treatments."
Lee Bacall
I am at a loss for options, maybe someone can help. I ran out of my name brand sinemet 25/100 a couple of days ago, and have Every pharmacywithin 75 miles, to no avail, to find out that all that is around is generic carbadopa levadopa, which does not seem to work for me. When I called Merck up they said that I was S O L, that they were not going to make that dosage any longer, with no expectation of resuming production of name brand sinemet 25/100 , My only option was to try the generic carbadopa levadope again and hope for the best. Canyou believe that! So I am hoping against hope, that someone may some suggestions I could pursue. I m desparate.
Lee, I am in NY and dealing with the same thing you are. This is not the first time Merck has done this. Please read my blog:
https://slippedawayblog.wordpress.com/2019/06/16/sinemet-shortage-the-silence-is-deafening/
I think it is outrageous that Merck did the same thing in 2010 and they got away with it. I suggest you share my blog with everyone you know . I believe something like what is going on with Sinemet can happen to anyone on a prescription drug. I am gong to see my DR. for alternative medication (that is the option Merck told me to do.). it wont be the generic carbidopa/levodopa) since that has not worked for me
john sam
Why dont you try 'Rytary' as a replacment with great potential effects compared to Sinemet?. I really see benefits of Rytary compared to Sinemet.
John
Thank you for your suggestion. I do not need a controlled release drug as I do not have fluctuations of on/off time (Yet). As I understand it, rytary is a controlled release drug, hence the reason why my neuro has not prescribed it
Joleene
Knowing that this can happen, I always order my refills as soon as the insurance company will allow. That way, over time, I'm able to build up a bit of a stash. Then, I make sure that when I start taking a new bottle, I take the one with the oldest date. This keeps my stash rotated so that none of the pills get outdated (older than one year).
Hi Jolene
It sounds like you have been burned by this situation before. I did have a little stash of sinemet as I have done the same. It is unfortunate we are at the mercy of big pharma. Since I have experienced the shortage issue with sinemet, others have told me of outages with their blood pressure meds or seizure meds.
Lyn Stanley
I am very disappointed that Sinemet is no longer available in Australia . I have been prescribed Madopar and I am not completely happy
It appears quite illegal that companies get away with this practice.
I will try to learn more about the “light” treatment and would be willing to try other things to make my symptoms more manageable
As am I lyn, others have shared that Britain and Italy do not have the same problem. i am still struggling with the generics; they are not the same for me. And this is not the first time Merck has done this.. https://slippedawayblog.wordpress.com/2019/06/16/sinemet-shortage-the-silence-is-deafening/
Susan Glassow
Jean, I attended the Parkinson's Disease School at Bastyr University last August. It is excellent.
I have heard it is excellent. I am so looking forward to attending and hope I can get some ideas for relief of my symptoms
Susan Glassow
I was just thinking of contacting my Oregon congressional representative. We need to do this throughout our country!
Go for it Susan. Our elected representatives need to be involved in this. Luckily, I have a friend who is connected to my representative so I got some attention. However, my Senator never responded. I see 2 issues, first is getting my Sinemet and secondly,legislation that requires drug companies to communicate these situations and provide ETA's if applicable. Finding out in a call back from my pharmacy that they couldnt process my refill is not acceptable. I was blindsided.
louise annette taylor
Try natural dopa mucuna... NOW brand we use..my hubby actually. He tried sinimet first but did not like sound of side-effects in the future so decided to try natural alternative. Works well for him...
brand.
hi louise
thanks for sharing. i am tempted to try mucuna again, but i got so nauseous on it.