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    • #24526
      Mary Beth Skylis
      Moderator

      Recently, my dad told me that he hasn’t had to adjust his Levodopa dosage since he had the Deep Brain Stimulation surgery. Occasionally, he shifts the timing of the drugs, but the amount is the same. 

      Have any of you had to adjust your Levodopa dosage? If so, by how much? Can you tell when the dosage is off?



    • #24799
      George Sharp
      Participant

      Hi there i have not adjusted my dosage as yet i find it depends on the day what you are doing if you are using your brain a lot or it is a bad day weather wise and you are siting watching TV not as i would call it a big mental day a lot then i some time miss my middle of the day pill and i find this happened quite a bit ,so i think in that respect i would have cut it down my dosage. But it is a good point you made i must put it to my doctor ,i take a Aziect at 10 and that is a very good pill and i believe if i was on these pills instead of the levodopa i would be lot better but that is for me to find out that could be a point for me to try it out .

    • #24808
      Krukar
      Participant

      Hi Mary Beth,

      I have been on C/L for close to 2 years. The research  says it’s effect decreases. Recently with the help of my Doctor I have added a bedtime extended release 50/200 dose.  With that I have reduced my Melatonin to 5 mg nightly. It has helped my sleep which is very important. I think it is critical to consult your Doctor for any changes. I hope that helps your Dad and others. Blessings, Mike

       

    • #24819
      William
      Participant

      I have been taking C/L for a few years. I started off on IR but soon started with dystonia in my foot (curled toes and cramps) so swiched to ER two tabs per 6 hours. Also tried rasagiline along the way but got serotonin syndrome and stopped. The ER worked fine for awhile but I found the first dose in the morning only lasted about 4 hours and subsequent doses about 5. I started mixing in an IR tab (leftovers!) as a bridge to the next timed ER dose and this worked for awhile but then got the dystonia back. (All of this in consultation with my neurologist). We then tried Rytary which was a Godsend for about 3 months but then of course I got one of the known side effects of irregular heartbeats and stopped.

      So long story now in the AM I take an immediate release 25/100 along with 1 ER 25/ 100 as it seems I am depleted in the AM. Two hours later a second ER 25/ 100. Then I time 5 hours from each dose for 1 ER. Seems to be working well to walk the tightrope between tremors and dystonia. I use the alarm clock on my phone to program the doses for the day. If I get tremors or dystonia I’ll adjust the timing a bit as it seems tremor for me is too little CL and dystonia is too much. I’m thankful I have a thoughtful neurologist and I should mention that I am a retired health care professional so he gives me some leeway in adjusting my meds as he says I do it in a “thoughtful way”. This may not be for everyone but it is working for me. Good luck to all.

    • #24824
      Tony de Morée
      Participant

      Yes I do, almost on a regular basis. My body is like a clock, indicating On and Off periods.
      Depending on my activities during the day I take more L/D, never less.
      A good workout, like swimming, or walking 20 – 30 km, needs more Dopamine than binge watching. That’s obvious. AND for an hour’s walk I need more Dopamine too. AND don’t forget there are good days and bad days.

      • #24836
        JB
        Participant

        That is identical to how my husband does his doses…. has to up 1/2 or 1 tab ER or IR when doing cycling or exercise.   Works well…..  He had DBS in 2012, not to the STN area but the GPI so his meds reduced a little in the beginning but now are back up to the same doses, if not more unfort.

    • #24833
      Anonymous
      Inactive

      Yes I do, with my Nuerologist’s complete backing.

      I find slow release Levadopa makes me feel depressed, where as fast release I feel great – whilst it is working. I take one first thing, then another midday (sometimes earlier) then  around 5pm, if I didn’t have this, my hands become almost unusable. I also am taking Sifrol in the am and Azilect in the pm.

      These are the current times that work for me plus I am still working. I do find if I do heavy labour (we are renovating our house,  for the progression of PD) I am far more energetic and it is better for my mental health.

    • #24838
      Jo S.
      Participant

      Do you mean since I started taking C/L? If so, yes — many times. However, since I started Rytary, I haven’t needed any real adjustments. I have, however, needed to increase one of my supplemental meds (gabapentin).

    • #24843
      Judy Cimala
      Participant

      My husband just had another adjustment to his C/L. He takes his meds  four times a day. 6 am. , 10 am. , 2pm. , and 6pm. His dosage is the same amount each time. It consists of both regular and extended release C/L. He still has a problem getting going after the 6am. dose. Usually feeling better by 9 am.

    • #25384
      John Sanchelli
      Participant

      I have had DBS surgery for 6 years and I am thinking about adjusting my levodopa usage to a single dose at night of half of a 100 mg pill for total of 50 mg once at night.

      Has anyone drastically reduced their dopamine after DBS? It has helped me with falling a lot less,

    • #25470
      Mitchell Niese
      Participant

      The first 6 months post DBS I was able to go without any medication. Recently I’ve begun taking 1 or 2 C/L per day. It helps with breakthru tremors and seems to help with stiffness and slowness enough to get a good workout, which always calms me and makes me feel better. Before DBS I was taking
      2 C/L 25/100 4 x per day and never felt as energetic as i do now, mainly because the tremors are now reduced 95%.

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