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    • #17193
      Ronald Cochran
      Participant

      I am writing on behalf of my Mother.  She is 90 years old.  She has had PD and has taken Sinemet for 10 years, so luckily her PD has progressed slowly.   In recent months her normal 3:00 PM dose does little to control her symptoms.  In particular her tremors become much move severe a short time after that dose.

      I have read of a number of Extended-Release meds., that might help her with this problem.

      Has anyone experienced such a late day Sinemet dose problem?  If so, might you have ideas of a medication that might help?

    • #17195
      Jean Mellano
      Participant

      hi ronald, have you spoken to your mom’s neurologist about his?  as i understand it,sinemet does NOT slow or stop disease progression, rather it helps to alleviate movement symptoms (eg; tremor). I am not a health professional but i would venture to say the sinemt is losing its efficacy to control symptoms due to disease progression.  an adjustment to her sinemet dosage maybe in order.

    • #17217
      Robert
      Participant

      Hi Ronald.   Interesting question.

      I am 66 yrs old diagnosed 18 months ago.  Probably really in my 3rd full year. Been on sinemet for 12 months.

      The past six months I have been dealing with off times before and after all sinemet doses.  This was and still is worst around my 3pm sinemet dose time.

      To deal with this, my doctor has me using both

      Sinemet and Sinemet ER in a way that seems to be helping.

      Of course, this is what we are tying for my particular version of the PD thing.

      And we all know that we each have our own particular version of this PD thing so I

      don’t know if what works for me would work for your mother.

      Best of luck.

      Robert

       

       

      • #17220
        Ronald Cochran
        Participant

        Hi Robert,

        Thank you very much for your reply! I wasn’t even aware that there is a Extended Release version of Sinemet. I’ll look into this some more and let my Mother know what you’ve told me and anything else I learn.

        Best,

        Ron Cochran

    • #17248
      Gail Dons
      Participant

      Hi Ronald!
      Jean is right that Sinemet does not stop disease progression. So far, nothing (except maybe exercise) does that. So glad your mom has progressed slowly! Last year, I began having dystonia-like neck contractions that woke me up at 0530 almost every day. My MDS started me on a bedtime dose of Sinemet CR, and it took care of the problem.
      Robert is also correct to remind us that everyone has their own particular version of Parkinsons. And the good news is that Sinemet CR is not the only product available for “off” episodes! There are several products, some very new, with different delivery systems (nasal sprays, anyone?) So, please talk to your mother’s neurologist or MDS. He/she can then look at your moms medical history, and discuss the options. You may have to try several things, as there can be side effects since each person responds to medications slightly differently. Keep at it – chances are good that your mom can get some help for this!

    • #17250
      Jean Mellano
      Participant

      Well articulated Gail, I could not have said it better

    • #17283
      Jo S.
      Participant

      Excellent answer, Gail! You covered it perfectly.

    • #17284
      Ronald Cochran
      Participant

      Hi Gail,

      Thanks a lot for your reply! I have talked to my Mom about Sinemet CR, and she plans to discuss this with her Neurologist.

      Thanks again,

      Ron

    • #17327
      Helen
      Participant

      I’ve opened the Forum hoping to read somewhere, somehow, somebody has an answer.

      Its after 3.00am which is my usual time to wake and forces me out.  Pain, numbness , bladder problems dictates my life of misery .

      2005 was a long time ago and never forgotten as that’s when the Sword of Damacles appeared over my head.

      Madopar introduced slowly.  Now hit and miss.  I’ve just taken half a 150 mg which will give me enough ON time once kicked in, which could take half an hour or 10 mins, to get to the bathroom, make bed, and feel half human.

      i have numbness all over, little dexterity to type and delete more times than I need to get my message out.   My desk is very close to the bed making ease of exiting easier.  I now wait.

      Because I now have severe Dyskenesia from the medication,  I’m loathe to take usual daily  dose so have to settle for this lack of mobility.
      My neurologist told me to play around with dose to help me find the optimum but I cant.

      Im in a Nursing home at 72.  Dumped by family.  Problem solved.

      i hate my life, I’m hurting with invisible pain and only Panacea seems to be out of sight to all, so ‘she’s ok mate’.

      Negativity now rules I’m sorry to report especially at this ‘witching hour’.  I can have moments of positivity later in the day but rare now.

      I’m managing to remain independent and I’d love to press ‘help’ button, but  because I don’t want strangers toileting me, showering me, dressing me, I don’t.   Why am I so stubborn.  There’s a Fall waiting to escape.  I know there’s hope out there but not in my lifetime.

      Forgive me .  2020 here but definitely no New Year Resolutions.

    • #17329
      Jean Mellano
      Participant

      Helen,

      I feel for you and am so sorry you are so down.  Totally understandable, we all have moments/days/weeks like that.  I fear loss of independence myself, but I cant go down that rabbit hole or I will never come out.   I try to focus on being in the moment and thankful for what i still can do… easier said than done.. I wish you peace Helen..

    • #17330
      Carol Rothfeld
      Participant

      I am also taking an injectable medication called Apokyn. It is subcutaneous and easy to administer. It boosts the effectiveness of the Sinemet and can be taken up to 5 times per day. My off time is in the morning to early afternoon. It helps with tremors, etc.

    • #17357
      Carol Rothfeld
      Participant

      I am also taking a sub cutaneous injection called Apokyn. It enhances the effectiveness of the Sinemet.

    • #17980
      Robert Harris
      Participant

      With me and others I have talked to, there is a very strong correlation between carbi/levo working or not working and (1) constipation and (2) eating protein. If I eat a typical hamburger, it tends to wipe out the effectiveness of my meds for the next two or three hours. Similarly, if I’m constipated and feel the pressure under my stomach, I also feel non-functional.

      I’m going to post a thread on constipation remedies for all of us to share what we find works and what doesn’t.

    • #17992
      Jean Mellano
      Participant

      robert, c/l seems to only mildly help my symptoms (mainly fatigue, bradyk, poor fine motor skills).  no constipation and i went almost 4 days of almost no or  very low protein and it did not make a difference. i usually take the c/l at least an hour before eating and take it with vitamin C (recommended for absorption)

       

    • #17996
      Mary Beth Skylis
      Moderator

      Robert- my Dad has noticed a connection between protein consumption and the effectiveness of Sinemet as well. Any time he eats eggs for breakfast or alot of meat, it seems to negatively impact how well his medications function. Do you think that might be the case with you too?

    • #18002
      Gail Dons
      Participant

      The Parkinsons Foundation has a good booklet on diet and Parkinsons. “Nutrition Matters” Here is an excerpt:

      “Protein in the meal is broken down in the intestine into amino acids. These aminos must travel across the intestinal wall to get into the blood. Then they must cross the blood-brain barrier to enter the brain. Sinemet also must transit the intestine and the blood-brain barrier using exactly the same carrier system as the amino acids.
      Most meals contain a large amount of protein, and the amino acids use up all the “carriers.” The Sinemet must wait until the carriers are free again, in order to cross over into the bloodstream. The same thing happens when Sinemet tries to get to the brain, where it does its work. Once more, amino acids clog all the “carriers” and Sinemet can’t get through to the brain.
      Therefore, it’s best to take Sinemet 30 to 60 minutes before eating a meal. This allows the Sinemet to be quickly absorbed before the food can interfere.”

      • This reply was modified 9 months ago by Gail Dons.
    • #18016
      STEVEN OPPEN
      Participant

      Hi, all. This is Steve in Sarasota, FL, sending my first contribution to this on line forum. Diagnosed in 2013 and, like all of you, fighting the good fight against this horrible affliction. I haven’t seen another drug mentioned, so I’ll throw it into the mix. It’s Rytary, a time-release version of Sinemet, available in 4-5 strengths. The bad news – Rytary is still a branded drug and is VERY expensive. If I had to pay for Rytary, my expenses would be about $15,000 per year (that’s for a relatively heavy dosage schedule). I thank the lord every day that I retired from a very well-funded biological research institute, and my drug costs are covered completely by a fabulous medical plan. If you have the means (and I realize that many of us would have difficulty with the cost), ask your neurologist whether Rytary makes any sense. Your neurologist may be able to give you some samples to try.

       

      Knowing that ” if you’ve met one PD patient, you’ve met one PD patient,” my experience with Rytary has generally been very good. I take the capsules one hour before each meal and one hour before bedtime.  Rytary’s efficacy can last for 4-6 hours. But, of course, nothing with this disease is a fixed target. I have been experiencing more and more late afternoon “off” periods, and they are truly horrendous. All of the PD motor symptoms take over my body, and my anxiety levels go through the roof.

      It so happens that I just returned from seeing my neurologist, and he prescribed a relatively smaller additional dose of Rytary, to be taken at 2:00 p.m. The hope is that the “off” experiences will diminish as a result of more levidopa in my system in the late afternoon. If the additional dosing does not help, or if my dyskinesia becomes unmanageable (currently, I can handle the “bobbing and weaving”), then we’ll have to go to Plan B. Plan B is a combination of Neupro (the patch) and smaller doses of Rytary.

      I hope that my experience gives you something to discuss with your medical team. Good Luck !

    • #18020
      Ephren
      Participant

      Hi, my name is Ephren,vand I completely understand what your mom is going through.  In my case this same scenario happens after my 6:00 p.m dose,  and what makes it worse the distonya on my neck.

      My Dr increased the dosage going this will help.

      Best wishes to you and especially your mom,!

       

       

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