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    • #15029
      Jean Mellano
      Keymaster

      I dont like the thought of taking medications, however, I decided to take Sinemet and Neupro patch so I could feel well enough to exercise. I often wonder how much they are helping me and under my doctor’s guidance, I am reducing Neupro patch dose.  4 days into dose reduction, i wonder if I am feeling bad due to a withdrawal type reaction and perhaps I may feel better if I get over the hump once my body stabilizes at a lower dose.  Or, could it be disease progression, or could it be I really needed the original dose.

       

      Have you tried to reduce your meds?  If so, what was your experience?  Were you successful?

    • #15090
      Andrew L.
      Participant

      Every time I try to wean it is a bit of a horror show. Also left wondering if it is disease progression or body is just getting used to meds. Am at the lowest dose I could function fairly normally at, but worried how long it will last.  Anyway now on Selegiline 2x per day (8 am and at noon), take 1/2 carbidopa/levodopa  8am, 1 at noon, 1 at 4 pm, 1 at 8 pm, 1/2 at bedtime (around 1130), and 1/2 if I wake up in middle of night (which is almost always). So 4 1/2 carbidopa/levodopa pills total over 24 hours. Every time I try to cut back from this (usually by taking a half instead of a whole or omitting a dose) my symptoms get much worse (mainly rigidity.) Also using CBD 5 mg under tongue 2-3x per day. Living life fairly normally. exercise a lot. Am worried though about how long this will remain effective and if/when will get dyskinesias

    • #15092
      Jean Mellano
      Keymaster

      Andrew, thanks for sharing.   I agree, it is a horror show. I have never felt good on the meds or off the meds.  I have forgotten what it is like to feel somewhat normal (ie; not slow moving or totally fatigued),  It has been years…

    • #15097
      Andrew L.
      Participant

      I find selegiline (taken 8am, 12 pm) to be an energizer, perhaps because it has methamphetamine metabolites.

    • #15098
      Jean Mellano
      Keymaster

      interesting…. i certainly could use an energizer

    • #15102
      George Kapetanakis
      Participant

      Energizer? I could use that too.

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