Living Well with Parkinsons Disease

Dancing in the Rain: Lessons Learned on my Personal Journey with PD (more at Copyright 2013-20 Sheryl Jedlinski

Who moved my Sinemet?

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?

  • The common assumption that all generic versions of a particular drug can be substituted for the brand name product with no noticeable difference is not true. Many patients notice no difference in their response when switching from a name brand to a generic drug or between generic brands. Others notice a slight difference but can tolerate it with a small change in dosage. Still others, like me, find their lives turned upside down.
  • While generic drug products must have the same active ingredients in the same amount as the original brand name drug, this does not ensure therapeutic efficacy or overall patient tolerance. The reason is that the inactive ingredients (dyes, preservatives, and flavoring agents) are not controlled and act as wild cards. Binding materials unrelated to the drug’s therapeutic action can be different, affecting how quickly the medication gets absorbed, and accounting for variations in blood concentrations, allergic reactions, and side effects.
  • New generic drugs are tested only in healthy patients, ignoring the uniqueness of the Parkinson’s population. This perhaps explains the inconsistencies reported by patients whose Parkinson’s symptoms may be particularly influenced by even subtle changes in blood serum levodopa level.

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?

  • Report to your physician on the effectiveness of the drugs.
  • Keep a side effects diary and track dose adjustments.
  • If a generic must be used, stick with a single brand (even if this requires requesting a special order) and partner with your doctor to adjust drug dosages to adequately control your PD symptoms.
  • When a generic drug has been unsuccessful, have your doctor appeal to your insurance company for a branded drug. Include details of the adverse side effects with the generic medication in the appeal letter.

2 comments on “Who moved my Sinemet?

  1. Sandie
    August 7, 2019

    The pharmacist can’t even get enough of one of the three generics to fill mine. One I particular I have the same problem you described. I end up putting it in the nighttime dose so I don’t feel the effect so bad. 😤

  2. Karen Handler
    August 11, 2019

    U r one heck of a trooper❣️

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This entry was posted on August 7, 2019 by in Coping Strategies, Drugs, FDA, Parkinson's Awareness, Parkinson's symptoms, Politics of PD.

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