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    • #20381
      Mary Beth Skylis
      Moderator

      When my Dad was first diagnosed with Parkinson’s disease, it took a great deal of time to find the right balance of medications. Together, he and his neurologist found ways to combat his symptoms after a bit of effort. But since Parkinson’s is fluid, the process is continuous. How long does it normally take to find the right medication balance?

    • #20561
      Barry Block
      Participant

      If you have a great PD doctor and a little luck, you will start on the right dose. I started on Sinemet 3 x a day. Later, when I reported sleeping problems, he added a 4th dose at night. I also find that a bag of fava beans or taking a macuna capsule helps when I need a boost.

    • #20562
      Troy
      Participant

      I lucked out in that once I was finally diagnosed, it only took my doctor a week to realize that 3 Carbidopa/Levodopa a day would not suffice and that 4 a day were necessary. Eventually, this will change. My biggest obstacle has been tending to the non-motor symptom of electrical nerve pain, which is addressed through a different medication. We have yet to find the proper dosage. Because symptoms present so differently from person to person, I suppose experiences will also differ, perhaps quite drastically. And as symptoms evolve, I expect the medication combinations to do the same.

      • #21697
        Sandy
        Participant

        Troy –  I’m curious how did you figured to take Carbidopa/Levodopa 4  x a day , assuming you are taking it every 4 hours is the right amount. My husband took Carbidopa/Levodopa 3 x a day, every 4 hours and it wasn’t enough. We decided to switch to every 6 hours with Carbidopa/Levodopa. I can tell the Carbidopa/Levodopa starts to decline after 4 hours but stretching it out every 6 hours helps hold him to 8pm. After reading your amount 4 x a day. I’m wondering if maybe my husband should switch to 4 x a day, every 4 hours. it would still hold him until 8pm but his declining may be shorten. What are the “right balance” to look for?

        • #21703
          Troy
          Participant

          Hi Sandy,

          Ideally, you want to get to a point where you are taking your next pill right when the last one is about to wear off. Some patients may be able to accomplish this with 3 or 4 pills a day and some with 5 or 6, etc. (and there are 25/100 mg pills and 25/250 mg pills). I think a lot depends on a person’s symptoms and how he/she responds to the levodopa. Some people may respond well to less while others may need a little more. And then it really comes down to trial and error and figuring out what works well at that point in time (because it’s always changing as things progress). 3 a day (every 6 hours) felt great initially because I had been taking 0, but then I realized the effect was wearing off before 6 hours were up; so my doctor switched me to 4 a day. Now I’m experiencing symptoms at a more frequent rate in between dosages; so, I may have an increase in my near future. Eventually, I may reach the max dosage a day (I think it’s somewhere between 1600-2000 mg), but I’ll cross that bridge when I get there. I have early/young onset PD, so maybe a little different to work with.  I hope I answered your question!

        • #21710
          Sandy
          Participant

          Troy – Thank you! I’m going to discuss about the every 4 hours, 4 x a day with Daryl’s doctor since I notice the 6 hours is wearing off a couple hours before it’s time to take the next one. We’re at 25/100 mg pills. As for Daryl opinion, he doesn’t know. He is more concern with his memory at this time so we have added Donepezil, to improve his memory, awareness, and the ability to function.

    • #20563
      Kevin McGuinness
      Participant

      I have not seen a PD in yrs.  i just take parcopa three times a day about 2 and 1/2 a day.  I am copeing with my multiple symptoms.  No body suggested frequent periodic contacts.

    • #20566
      twok
      Participant

      Kevin, I can’t imagine not seeing a neurologist regularly.
      Perhaps your pcp knows a lot about parkinson’s?

    • #21723
      Rick Tabakin
      Participant

      My first PD meds were part of a drug trial. I was titrated up and then back down while being frequently monitored. The trial drug did not work well for me.

      Once the trail was over, the doctor started me on Sinemet and Neupro patch. It took about two months to get the right dosage on each. Since the, the doctor prescribes some minor “tweaks” to the prescription mix when necessary.

    • #22075
      AK Jones
      Participant

      Still working on a good fix for me, I started out taking 2 pills of Carbidopa/Levodopa.3x a day, moved to 4x a day FYI, (new  neurologist said more than 800mg a day is toxic), He recently added 200MG, of ENTACAPONE, EVERY 6HRS.  And God blessed me with this mixture allowing me to be more mobile; my PTSD meds had to be reduced because of interactions. He will start me on, after a few more months, MIRAPER,

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