Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at www.PDPlan4Life.com) Copyright 2013-20 Sheryl Jedlinski
By Sheryl Jedlinski
When drug maker Merck announced that its brand name SINEMET® would be unavailable in the United States for the foreseeable future, I felt like someone had pulled the rug out from under me. What would replace it as the mainstay of my Parkinson’s disease treatment plan, and how would the change impact my symptom management and quality of life?
I started on Sinemet a year ago after my pharmacy, on its own initiative, switched me from one brand of generic carbidopa/levodopa to another. The generic brand substituted for the one I had been taking did not work for me. It was slower to kick in, quicker to wear off, and resulted in more “off” time than I could tolerate. Determining the cause of and reversing my downward spiral took months of emotional turmoil, physical therapy and titrations of my medicines.
Switching to brand name Sinemet ultimately got me back on track, but at great expense. My out-of-pocket 90-day prescription cost (based on taking 14 tablets a day) skyrocketed from $11 to $1,100… a difference that approaches highway robbery. Are we to believe Merck still has not recouped its research, development, and marketing costs for what has been the “gold standard” of Parkinson’s treatment — though not a cure — for more than 50 years? Or is price determined by what the market will bear, knowing there is no limit to what the chronically ill will pay for even the smallest improvement in quality of life?
Only a week since I exhausted my supply of Sinemet and started on yet another generic version, I am still adjusting to this change in formulation. I will have to keep struggling with this because Merck still has no idea when its Sinemet will return to pharmacy shelves.
What have I learned from this experience that you should know, too?
If you’re happy with how a generic drug works for you, find out who the manufacturer is, and request that version with every prescription refill. If the drug does not seem to be working well, you should still determine the manufacturer and discuss your options with your doctor and pharmacist.
What can you do to ensure that you are getting the best results from the drugs you take?