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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