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    • #16734

      Born in June 1939, I was diagnosed with tremor dominant Parkinson’s in November 2015. The tremors are quite severe. I have been taking Co-Careldopa 12.5mg/50mg 6 tablets daily, but I notice no relief of tremor on taking the medicatiion, nor can I detect any “On” and “0ff” periods. The medication seems to have no effect at all, at least on the tremor. Any comments and suggestions would be welcome!

    • #16737
      Jean Mellano
      Participant

      hi john, i have the same issue, I am taking C/L and use neupro patch, yet, i wonder, is it doing any good….  it has been almost two years and i am still trying to find the right ‘cocktail ‘ of drugs to banish my symptoms (extreme fatigue, bradykinesia, poor fine motor skills and sometimes dyskinesia)

    • #16752
      Roseanne
      Participant

      I was diagnosed in April 2017. I was very reluctant to taking any medications after reading all the side effects😳.  After about 6 months I started with Azilect 1mg daily because my doctor says that it might slow down the progression of parkinson’s. My doctor then convinced me to start Amantadine 100mg twice a day. It seemed like every visit she was suggesting another drug to take. And even when she gave me the prescription it would take me a month or so to actually start the medication. (I’m a problem patient🙁) I was afraid to start carbidopa/levadopa because of the fear of dyskinesia. But my tremors were getting so bad I agreed to start pramipexole ER 0.375mg 3 times a day. I have been on that now about 1 year. I have been having a big problem with fatigue. Yesterday I started Rytary 23.75/95mg 3 times a day while tapering off the pramipexole. Yesterday was a great day. I felt great, no fatigue, tremors felt better. So far today no fatigue, but not doing so well with the tremors. But it is also thanksgiving and I am having all 4 of my kids and their families over for dinner. I tend to get very anxious on the holidays and when I’m anxious nothing will control my tremors. So I will have to give it another couple of days to see how it works. Hopefully it will help. Sorry for such a long post. It feels good to be able to talk to someone about this.

    • #16759
      Jean Mellano
      Participant

      Roseanne,  thanks for sharing.  I too am frustrated with the PD meds, try something for a couple of weeks, if that doesnt work, add this or increase dose or start over with something new. I am also a problem patient.  I do not have tremors, but my bradykinesia and fatigue are crushing. anxiety (something i never had before PD) and stress really exacerbate my symptoms.   I am on 1 tab 25/100 C/L 3x per day and periodically experience dyskinesia.  I plan to talk to my neuro about rytary.

    • #16764

      An article in Parkinson’s News Today on Sept 17th reports research which finds that while “levodopa, a dopamine replacement therapy…..effectively treats bradykinesia [slowness of movement] and rigidity, the effect on resting tremor is unpredictable and varies greatly between patients.” So we have to keep our eyes and ears glued for alternative treatments that <u>do</u> help the tremor. Meanwhile,  with the help of our families we must  keep as calm / agitation-free as possible [I find that deep relaxation / yoga techniques can calm my tremor] and take plenty of shut-eye rest, especially when there is   loads od washing-up to do and other hands to do it.

    • #16772
      Jean Mellano
      Participant

      hi John, I think I found the link for the article you mentioned: https://parkinsonsnewstoday.com/2019/09/17/resistant-tremors-arise-outside-brains-dopaminergic-system/

       

      Interesting… bottom line, I dont think science and the medical commmunity know what to do for us folks with PD

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