Sinemet

Hello. We are aware that Sinemet is used for regular Parkinsons but is used for PSP patients and can help alleviate some of the symptoms not all and not guaranteed. Initially over the first 3/4 months Mum's response was positive and her speech became less slurred and her movement better, however, the side effects she suffered with the worst was dry mouth and swallowing, but it's hard to know if this is the medicine or the disease. Also sweating has become increasingly worse. Mum finds everything unbearable and blames the Sinemet for everything, but really her symptoms have progressed and a lot of it is the disease sadly. Has anyone else had experience on Sinemet? Equally has anyone had experience of any other medication that has made a difference?

17 Replies

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  • Hi, my husband has been on Sinemet for the last two years. Never really sure If it was working. Read somewhere on here recently, about the side effects. S was suffering from every one, so decided to reduce his dosage. Was on two, three times a day. Got it down to one tablet three times a day. At first thought it was going very well, but very quickly realised that he was going down hill very fast. It was quite frightening, he got very confused, slow in movement. Immediately started increasing the tablets again. Nearly back up to full amount and he is a lot better, thank goodness!

    You will get the total opposite response. I guess it's, each person is different, so the affects of the drug will help some and not others!

    Best of luck, it's not easy, any improvement is worth taking the drug, but equally, life is too short to be getting nasty side effects on a pill that may or not be working.

    Lots of love

    Heady

  • Thanks for your response. We had the same experience by reducing the dosage but she went downhill rapidly and was doing brilliantly on 4 tabs 3 times a day which was the recommended dose, however, she's mentally against so for her it hasn't been worth it for her spirit and peace of mind, however, it's difficult to witness as we can see how well she was doing on them and she is declining without the aide. On a positive note she is having acupuncture weekly and a regular massage and finds this helpful albeit temporal relief. Isn't it heartbreaking!!!

  • HELLO . I HAVE FOUND THAT AMANTADINE HAS HELPED ME A LOT AND I KNOW WHEN I HAVNT TAKEN A TABLET

    ALL THE BEST

    SHASHA XX

  • Thanks for your info Heady, its good to talk to others who understand what you're going through x

  • My guy was tried on sinemet early on and it didn't seem to do anything good. The dry mouth he had from that and another medication made him quite uncomfortable, so he went off it pretty fast. I think we've tried everything and basically saw no good effect from anything, although he's taking selegiline now - there's no telling if it helps, but there don't seem to be any problems with it, so on we go!

  • Thank you for your reply.

  • Hi

    my husband was on Sinemet for at least 2 years ,up to 3 tabs 3 times per day.He has CBD.We were never quite sure if it was doing any good and so it was decided to reduce the amount gradually so that by last Christmas he wasn't taking any at all.after 6 weeks off Sinemet It did seem as though Roy was a lot stiffer and less mobile but was it just the progression of his illness? I don't know for sure.He is back on Sinemet now...still falling still stiff, less mobile but as far as I can see no side effects so for now at least we are going to leave the tabs as they are....I just hate having to have the responsibility to say wether or not the medication is making any difference! It's seems so hard to tell now!

    D

  • all your words are exactly the same as I have felt from day one with Sinemet ,. Couldn't say I ever saw any benefit but continued until I started to reduce them . he would seem a lot better for a while bit if he had a bad day thought it was the reduction , chicken and the egg situation and if it's the progression .

    on top of that any additional meds else have tried have caused him to be worse and given him bad reaction with hallucination big time . I have been monitoring him and even reduced his BP meds .

    it's a nightmare isn't it .Cant do right for wrong and such a responsibility .

  • Here! Here!

    Lots of love

    Heady

  • C. has been on sinemet, 2 tablets 3 times a day since diagnosis year ago. We all thought he seemed to talk better and have more mobility after taking. He is gradually deteriorating but the neurologist is pleased with him. He seems to be doing better with it. Like everyone else we don't know - but cling on to doing something. He chews gum to help dry mouth. Yesterday he started with a cold I had last week and it has just taken all his strength. I find anything has this effect but, so far, he then recovers strength. Its hard if your mum is anti because no-one knows the answers, including the neurologists. We can only do our best.

    Love, Jean

  • Hi

    My Mum has been tested for many neuro diseases and in the absence of a definite result for any of them she has the diagnosis of CBD. Neurologist has put her on Sinemet 2 tablets 4 times a day as he said that one of the test results showed a dopamine deficiency on the left side of the brain. Her right side is badly affected which is controlled by the left side of the brain. As Sinemet contains a dopamine derivative it kind of makes sense to stick with it but I have to admit I cant see a huge improvement over the last few months at all. In fact she has had a very nasty fall (tiredness?) but wouldn't like to risk suggesting she comes off it as it might accelerate things? Its so difficult to know what to do for the best..I think taking something must be better than nothing even if it just has the benefits of a placebo effect as long as there aren't any side effects?

    Sending hugs

    Martina

  • Sinimet either doesn't work for PSP patients OR it works but only for a short time. Check the long term effects of this drug. Some side effects are permanent and can't be fixed. Make sure the drug is REALLY working and act accordingly. Just some advice from what I've read about the drug. Jimbo

  • Thank you

  • Hello,

    This is my first comment here. I hope it could be useful.

    My father "70 years old" has been diagnosed of PSP for almost 4 years. since the first day he is taking sinemet , amantidine"PKMERTZ", sifrol 2 tablets of each daily. His case is not deteriorating that much unless speech, mobility, management. lately he suffered unbearable stomach pain and fainting and sweating directly after taking sinemet. the doctor changed the regular sinemet to "sinemet CR" which until now gave the same result with less side effects. nevertheless i am full of hope and trust god that one day he will be cured totally and ends the worst nightmare in my entire life.

    Warm wishes

    Mahmoud

  • Thank you Mahmoud. My mother found the sweating unbearable. My best wishes to you also, it's very hard. Hope you find this site helpful and of some comfort that others understand what you are going through, as you can feel quite isolated at times. Keep up the prayers. Kindest regards.

  • Hi, just read your post about sinemet, my sister 81 has been on sinemet since diagnosed 4/5 years ago. Recently she has difficulty swallowing and now at risk of choking and on pureed diet her sinemet can't be got in liquid form so they have changed her to madopar liquid and she is talking again as she was not communicational and we thought the end was near,the improvement is amazing I don't know how long this will last but we are enjoying it for the moment and so good she can talk a little to us now. I wish you all the best let me know how things go take care.

  • HI AFTER I WAS DXD WITH PSP I TRIED SINEMET OR IT S EQUIVALENT AND IT MADE NO DIFFERENCE OS STOPPE D IT ' SAME WITH AMANTADINE - NO DIFFERENCE SO STOPPED IT TOO ~(GRADUALLY Not ALL AT once)

    I HAVE TRIED COQ10/ TURMERIC TO NO GOOD USE EITHER SO HAVE GIVNE UP HTE EXPENSIVE ONE (THE COQ10~_) AND JUST KEEP ON WITH THE TURMERIC UNTIL THAT IS FINISHED

    I REALLY DO NOT HTINK ANY OF THESE DRUGS DO ANY GOOD FOR

    PSP PEOPLE AT ALL

    (I M H O~)

    LOL JILL

    ;-)

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