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    • #18089
      Mary Beth Skylis

      After the initial diagnosis, many people can wait to start taking medications. But it seems like the progression of the disease makes finding the right dosage difficult. And since it’s an ever-changing process, our needs seem to shift with time.

      What is it that makes treating PD symptoms so complicated? Do you ever feel like you’ve found a good balance? And does it get easier to regulate medications as you become more attuned to the disease?

    • #18158

      Just an interesting question. I think you can answer this by your self.

    • #18190
      Toni Shapiro

      Hi Mary Beth, Hope your Dad is doing well.
      I chose to take medication right after my formal diagnosis. It was obvious that I had had Parkinson’s long before. My neurologist also thought it was in my best interest to start right away and I am glad I did. I had almost immediate relief. Although my medication has changed a few times last year I think I have the right mix at present. But only for present not for future. I think regulating is tricky is because things keep changing; symptoms, on and off times, progression etc. Parkinson’s itself is very tricky and it follows that regulating medications would also be an issue. I think it is a given that my medications will keep changing.

    • #18195
      Robert Harris

      Here are some thoughts on why regulating  Parkinson’s medications can be tricky:

      1. Parkinson’s is a progressive disease, so over time medications will have to be increased. But the most effective increase is not obvious, Do  you increase dopamine (Cd/Ld), add a dopamine agonist to make the Cd/Ld work better, or add an MAO-B  like rasagiline to slow the breakdown of  dopamine?

      2. It’s easy to forget that  you must wait at least an hour after eating before you take your Cd/Ld. Preferred is to take your first dose when  you get up, so you’ll  have an empty stomach, then wait an hour before breakfast. But then there are lunch and dinner. I’m taking 5 doses a day, at 6, 10, 2, 6, and 10. Do you see the problem? The 2 pm and 6 pm are regularly taken too close to meal time, and a protein slug at lunch or dinner pretty much knocks to Cd/Ld.

      3. If your bowels are plugged with junk (that is, if you are constipated), the absorption of the Cd/Ld in the intestine inhibited.

      4. In some Parkies, exercise can burn off dopamine, putting the Parky into an off period.

      In other words, titrating  your meds is  shooting at a moving target.

      Lastly, half the time I get a refill, the pills (always generic) are made by any one of several different manufacturers, mostly in India. Since the FDA allows a rather wide range of potency in  a drug as long as it has “bioequivalency,” you might be getting a slightly different potency with every refill.


    • #18205

      Good question Mary Beth

      Hello to Robert Harris from another member of the “Robert” clan.   My son is the sixth Robert in our family tree (we do change the middle names, so no Roman Numerals after our names.).

      We seem to share a lot on this PD journey.  I too take pills 5 or six times a day and seem to have been issued the same “plumbing” system that you describe.  And I too show evidence that PD bowel problems can interfere with Sinemet absorption.

      One difference so far is that my doctors have an overall theme that PD is a dopamine deficiency disease.  PD people need more dopamine.  That’s the only med I take directly for the PD.  2 regular pills 5 times a day plus some overriding extended release pills on top of the regular doses and 2 extended release at bedtime.  They have told me that the other Parkinson’s pills have too many side effects and after tying them over the years, they avoid them.  I do take a medication for low blood pressure which is a feature of my PD.  I am in my 15th months of taking any meds. And when I am on I am able to work full time and have convinced myself that no one knows I have PD.

      It took a full year to determine my correct dosages and timing.   We made adjustments 6 times over the past year.

      I had a period last summer where I thought my pills just completely quit working.  That change was so sudden that I now wonder if it wasn’t caused by a change in supplier like you described.  My doctor’s response to that was to triple my dosages with timing and amounts.  My PD obviously needs a higher dosage as my correct treatment.  But the sudden ineffectiveness of the meds made no sense.   I think a difference in the “potency” of the PD pills between suppliers is a logical explanation.

      I never had much of a tremor.  I am a stiff and slow PD person.  Without the pills I could not function.

      Best regards to all.

      Robert C.




    • #18209
      Mary Beth Skylis

      I hadn’t thought about the mechanics of mid-day digestion (especially if you’re struggling with constipation!). Thank you for sharing your thoughts and observations.

      My Dad has noticed that what he eats has a big impact on the functionality of his meds as well. For instance, eating eggs (high protein) in the morning seems to make his meds less effective even when he times his dosages as recommended.

      And I had no idea that there was such a large variance in potency. That seems odd, to me.

      Robert- did you ever experience another period when your meds seemed to stop working? Or was it just the once?

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