Parkinson’s News Forums Forums Parkinson’s Treatment Therapies and Medications Tolcapone (Tamar)/Unpredictable OFF periods

  • Tolcapone (Tamar)/Unpredictable OFF periods

    Posted by Heather on November 30, 2022 at 11:28 am

    My husband has had PD for about 10 yrs (formally diagnosed by his neurologist in 2015).

    This year the Entacapone he’d been on for a no. of years was replaced by Tamar (1 tablet st first, currently the max. dose of 2).

    It has made better use of the Sinemet he takes, but causes worse dyskinesias than before. It’s a balancing act so we’re trying reducing his Sinemet dose by 1 tablet daily, which helps.

    The Tamar hasn’t helped with the unpredictable OFF times he has some days. We’ve seen the neurologist about this again but he has nothing further to offer other than continuous subcutaneuos delivery of meds, which my husband is reluctant to start on.

    Any comments on others’ experience of taking Tamar,  and also meds that can help with smoothing out unpredictable OFF times would be much appreciated.

    Heather

     

    Mary Beth Skylis replied 1 year, 11 months ago 4 Members · 5 Replies
  • 5 Replies
  • Laura

    Member
    December 2, 2022 at 4:17 am

    Hi Heather, has your husband ever tried Inbrija, it’s a fast acting inhaled medication, that goes directly to the lungs. It is used specifically for off periods between doses, or other times like what’s happening with your husband.  It’s reaction time is about ten minutes and lasts for about an hour and can be taken up to 5 times a day. I tried it a few years ago, but it didn’t work out for me, it caused severe coughing, which is the side effect, I couldn’t get the medicine inhaled, I would start caughing immediately.  Maybe your husband would have a better  reaction to the medication. Wishing you well.

     

     

     

     

     

     

     

     

     

     

     

    • Mary Beth Skylis

      Moderator
      December 6, 2022 at 10:57 am

      Laura,

      My dad tried Inbrija, and didn’t really feel that it made a big difference. I’d be curious to hear from a few people who’ve had success with it! Did you find that when you briefly used it that it had a positive impact on your off times?

  • Christine Pratt

    Member
    December 2, 2022 at 11:12 am

    To minimize Dyskinesia I use Amandatine.  It works well for me.

    • Heather

      Member
      December 2, 2022 at 5:57 pm

      Hi Laura

      We’re in New Zealand and unfortunately this medication is not available here.
      Thanks for your reply.

      Heather

    • Heather

      Member
      December 2, 2022 at 5:58 pm

      Thanks Christine,

      We’ll look into Amantadine thanks.

      Heather

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