Has anyone been on sinemet for several years. I have been taking it for 10 months. I have reduced my intake from 3 tablets of 125g a day to 1 of 125g followed by 2 of 62.5g. I find about an hour before the next dose I start to feel stiff, but I am worried about long term effects such as dystonia being increased by taking the higher dose now.
I have been on Sinemet since 2006. Over the years the daily dose has gradually crept up. This was necessary ,because, although the disease progresses slowly, my quality of life was deteriorating and I wanted to improve it. Of course I could take less, but it would be very uncomfortable. I accept the very likely pay-off for this, i.e. the dyskinesias, will start one day, some get it sooner than others. When these become bothersome there is some treatment for that too.
In the end it is up to the patient: how they feel , what they can tolerate,what the pressures of daily life(family, possibly work)are, all these could play a role in deciding to start with levodopa medication and/or increasing it. Only we, the patients can really judge the benefits (and side-effects) of treatment. We have to live with it.
If you feel mostly fine on the lower dose there is no reason to increase it, of course. After all, the recommendation for all the PD drugs is "go low, go slow" and that means take the lowest dose that is effective and do not increase this unnecessarily.
By the way, I think you probably mean dyskinesias (involuntary movements), not dystonia (painful cramps), which is something else.
In the end it is up to the patient: how they feel , what they can tolerate,what the pressures of daily life(family, possibly work)are, all these could play a role in deciding to start with levodopa medication and/or increasing it. Only we, the patients can really judge the benefits (and side-effects) of treatment. We have to live with it.
If you feel mostly fine on the lower dose there is no reason to increase it, of course. After all, the recommendation for all the PD drugs is "go low, go slow" and that means take the lowest dose that is effective and do not increase this unnecessarily.
By the way, I think you probably mean dyskinesias (involuntary movements), not dystonia (painful cramps), which is something else.
Hi Kate thanks for your reply, good to know you are feeling ok 6 years on. Yes of course everyone is different! I think I feel fearful about having these involuntary movements. I thought I had got the word wrong too, but on Wikipedia it seems to encompass dyskinesia. What dose are you on now?
Hi Valerie,
I started in 2006 with 3x 62,5mg Sinemet, which worked fine together with the Mirapexin, which I had been taking since Oct 2001. After about two years I increased to 3x 125mg Sinemet(=3x 2 tablets of 62,5mg),and started to lower the Mirapexin dose and eventually increased the Sinemet over the next years to 9 x 62,5mg, spread out over the day at approx. 3 hour intervals : 2 tabl half hour before breakfast,1 tabl halfway between bfast/lunch, 2 tabl before lunch, 1 tabl halfway ,2 tabl before evening meal, 1 tabl halfway evening. I am now taking this sequence: 2, 2, 2, 2, 2, 1 tabl of 62,5 mg(total 11 tablets) and at bedtime one Sinemet CR 125mg to get me through the night. Some people might find such frequent pill-popping bothersome, but it suits me and fits into my daily routine. I still take Mirapexin as well ( 3x 0.7mg)
I started in 2006 with 3x 62,5mg Sinemet, which worked fine together with the Mirapexin, which I had been taking since Oct 2001. After about two years I increased to 3x 125mg Sinemet(=3x 2 tablets of 62,5mg),and started to lower the Mirapexin dose and eventually increased the Sinemet over the next years to 9 x 62,5mg, spread out over the day at approx. 3 hour intervals : 2 tabl half hour before breakfast,1 tabl halfway between bfast/lunch, 2 tabl before lunch, 1 tabl halfway ,2 tabl before evening meal, 1 tabl halfway evening. I am now taking this sequence: 2, 2, 2, 2, 2, 1 tabl of 62,5 mg(total 11 tablets) and at bedtime one Sinemet CR 125mg to get me through the night. Some people might find such frequent pill-popping bothersome, but it suits me and fits into my daily routine. I still take Mirapexin as well ( 3x 0.7mg)
Hi Kate and Valerie,
My husband has been on sinemet 125's for thirty years, he did have an operation called a pallidotomy (not sure that looks right) which they don't use now.The reason he had to have that was, he was diagnosed in 1982 and many people were given sinemet in too higher doses too soon at that time which caused dyskinsea, this doesn't happen now as pwp's usually start on agonist s which can cause other problems for some people.
My husband is now on sinemet 125 hourly from 6am to 10pm as well as 4mg repinerole at 8am and a few other tablets, he is also allowed three madopar dispersal per day which are great when you have a dip after meals etc, he has been on these drugs for the last six years and although he has his problems he can still beat the carer's at the WI and scrabble when he is switched ON, he falls all the time but that is because he won't use his wheelchair[u][/u] He is very determined or stubborn which ever way you want to look at it.
I just thought you might like to hear from someone who has been on these tablets a long time so that you can see increasing tablets to give you some quality of life is possible.
best wishes
vivian
My husband has been on sinemet 125's for thirty years, he did have an operation called a pallidotomy (not sure that looks right) which they don't use now.The reason he had to have that was, he was diagnosed in 1982 and many people were given sinemet in too higher doses too soon at that time which caused dyskinsea, this doesn't happen now as pwp's usually start on agonist s which can cause other problems for some people.
My husband is now on sinemet 125 hourly from 6am to 10pm as well as 4mg repinerole at 8am and a few other tablets, he is also allowed three madopar dispersal per day which are great when you have a dip after meals etc, he has been on these drugs for the last six years and although he has his problems he can still beat the carer's at the WI and scrabble when he is switched ON, he falls all the time but that is because he won't use his wheelchair[u][/u] He is very determined or stubborn which ever way you want to look at it.
I just thought you might like to hear from someone who has been on these tablets a long time so that you can see increasing tablets to give you some quality of life is possible.
best wishes
vivian
Hello I was dx in 2006 aged 45yrs. Mirapexin worked well until I was on top dose and had to be taken off it as it caused me terrible OCD in the form of Gambling.. I was put on sinemet 62.5mg since end of 2010 which was increased I saw my neurologist 6 monthly. My symptoms have not really been very controlled, but since last October 2011 I seemed to have rapidly and at the time I had just had a 2 week holiday abroad and put it down to the tiredness and! Freezing (a new symptom for me) started more or less as soon as I came home, which really frightened me and the obvious occurred, I was falling due to the freezing. I was on 2x125mg 4 times daily. I have now steadily crept up to 2x125mg every 2 hours, daily total of 1800-2000mg sinemet! The very erratic "on" and "off" meds are making me very frustrated, and causing me extremely painful dystonia until the meds kick-in in approx. 45mins. I was wondering if Madopar would be a better choice, even though I have been told it is the same as sinemet just called different name. Entacapone caused me sickness. I am now waiting for DBS. Has anyone experienced such a rapid deteriation and what was recommended for management of symptoms? Please let me know as anything is worth trying. Regards
Hello Dairylea,
As you may have read my husband has had pd for thirty years now, he was only 39 when diagnosed but I had been nagging him to see the doctor for several years so has probably had it since early thirties.
I am a bit confused as to why you take two 125mg sinemet at a time as that is definitely not what our consultant would say to do but who I am to say! We have always been told to take one at a time and space them out regularly and I found that when he was in hospital once that they were not giving them to him properly, as our doctor was away I asked the ward doctor if I could suggest that they space them out instead of giving them when they thought he needed them, The difference was really amazing to them but just common sense to us. Madopar dispersal is very useful to get you out of a spot but I would have thought as the tablets don't stay in the system for too long it would be an idea to ask the nurse about spacing them out evenly through the day and you should find that will help, you may need and agonists to help lengthen the doses.
I hope this helps and you have an understanding nurse or doctor.
best wishes
vivian
As you may have read my husband has had pd for thirty years now, he was only 39 when diagnosed but I had been nagging him to see the doctor for several years so has probably had it since early thirties.
I am a bit confused as to why you take two 125mg sinemet at a time as that is definitely not what our consultant would say to do but who I am to say! We have always been told to take one at a time and space them out regularly and I found that when he was in hospital once that they were not giving them to him properly, as our doctor was away I asked the ward doctor if I could suggest that they space them out instead of giving them when they thought he needed them, The difference was really amazing to them but just common sense to us. Madopar dispersal is very useful to get you out of a spot but I would have thought as the tablets don't stay in the system for too long it would be an idea to ask the nurse about spacing them out evenly through the day and you should find that will help, you may need and agonists to help lengthen the doses.
I hope this helps and you have an understanding nurse or doctor.
best wishes
vivian
Kate,
With your current use of Sinemet and Mirapexin combined, what symptoms remain totrouble you by day or night?
Further, what side effects do you notice with this combination?
I now take Sinemet Plus 25mg/100mg 4 times per day and find I still have tremor (rising with stress), low energy, mental
uncertainty (being indecisive) and irregular sleep pattern.
The Sinemet Plus are better at symptom control than the Mirapexin
(0.35 4 per day) which I took previously.
Mirapexin caused me OCD, anxiety and sometimes a degree of
psychosis.
However if I add one Mirapexin (0.18) per day to the Sinemet then I get better all round relief through the day.
Thanks for your assistance,
Arsene
With your current use of Sinemet and Mirapexin combined, what symptoms remain totrouble you by day or night?
Further, what side effects do you notice with this combination?
I now take Sinemet Plus 25mg/100mg 4 times per day and find I still have tremor (rising with stress), low energy, mental
uncertainty (being indecisive) and irregular sleep pattern.
The Sinemet Plus are better at symptom control than the Mirapexin
(0.35 4 per day) which I took previously.
Mirapexin caused me OCD, anxiety and sometimes a degree of
psychosis.
However if I add one Mirapexin (0.18) per day to the Sinemet then I get better all round relief through the day.
Thanks for your assistance,
Arsene
Hi Arsene,
When the pills work, I feel normal. When they don't, I feel very disabled, as I can hardly move around the house, feel weak and wooly-headed, all energy seems to have drained from my body. I feel wobbly deep inside, insecure, writing is awful, speech is soft and slow. I never had much of a tremor, it mainly appeared(appears) when I am put under stress and the pills have not done their work. In the mornings I sometimes wake up with a vigorous one sided tremor, which I can control gradually .For some reason I feel I should suppress the tremor as much as possible and not let it get out of control, with the idea that if I did not, it would eventually take over. The Sinemet ,no doubt, is the more powerful and effective drug. It is not always predictable if or when it will work as absorption is affected by stomach contents and I like my food! The length of time the drugs remain effective is also becoming less predictable over time. This could mean increase the frequency of my pill times or I should maybe increase my total levodopa intake, but am reluctant to do this on a regular basis, so occasionally, depending on circumstances, I take an extra 62.5mg Sinemet. (this was discusssed with neuro) Nighttime is difficult as the drug levels in my system slowly decrease, which makes it hard to make it to the bathroom and the low levels make me stiffen up and I tend to press my body into the mattress, which after a while becomes painful at the pressure points, which wakes me up. In the end I am so uncomfortable that I get up , take my first dose of PD medication and half an hour later I am OK.
Side effects are not a problem (yet), neither from the Sinemet, nor from the Mirapexin. Sometimes some acid reflux. very occasionally constipated, swollen feet/ankles, but less so than in summer. I also gained a lot of weight when put on Mirapexin (about 28lbs), but that has now remained stable for a long time. I have some (not for money, just the winning/solution is the aim) compulsion of playing simple computer games or doing sudoku. I am concerned , however, about the reports on Mirapexin and heart failure. I have been taking these now for over 10 years.
When the pills work, I feel normal. When they don't, I feel very disabled, as I can hardly move around the house, feel weak and wooly-headed, all energy seems to have drained from my body. I feel wobbly deep inside, insecure, writing is awful, speech is soft and slow. I never had much of a tremor, it mainly appeared(appears) when I am put under stress and the pills have not done their work. In the mornings I sometimes wake up with a vigorous one sided tremor, which I can control gradually .For some reason I feel I should suppress the tremor as much as possible and not let it get out of control, with the idea that if I did not, it would eventually take over. The Sinemet ,no doubt, is the more powerful and effective drug. It is not always predictable if or when it will work as absorption is affected by stomach contents and I like my food! The length of time the drugs remain effective is also becoming less predictable over time. This could mean increase the frequency of my pill times or I should maybe increase my total levodopa intake, but am reluctant to do this on a regular basis, so occasionally, depending on circumstances, I take an extra 62.5mg Sinemet. (this was discusssed with neuro) Nighttime is difficult as the drug levels in my system slowly decrease, which makes it hard to make it to the bathroom and the low levels make me stiffen up and I tend to press my body into the mattress, which after a while becomes painful at the pressure points, which wakes me up. In the end I am so uncomfortable that I get up , take my first dose of PD medication and half an hour later I am OK.
Side effects are not a problem (yet), neither from the Sinemet, nor from the Mirapexin. Sometimes some acid reflux. very occasionally constipated, swollen feet/ankles, but less so than in summer. I also gained a lot of weight when put on Mirapexin (about 28lbs), but that has now remained stable for a long time. I have some (not for money, just the winning/solution is the aim) compulsion of playing simple computer games or doing sudoku. I am concerned , however, about the reports on Mirapexin and heart failure. I have been taking these now for over 10 years.
Kate,
Thankyou for your informative reply to my questions.
It is very helpful.
I was hoping that you would say your meds regime leaves you feeling as fit as Popeye after he has consumed a can of spinach!
Like you, I find that mood and ability rise and fall unexpectedly
and that however we space the Sinemet, there are always down periods in the 24 hour day.
I find that reducing my food intake improves things, but we have to eat. Therefore I cut back on eating for just two days a week and this certainly makes me feel better.
I also gained weight when taking Mirapexin.
This was because I developed a mild obsession for chocolate and cakes.
As to constipation, I take one omega three fish oil capsule daily to lubricate the digestive system. This also helps with joint mobility. An Anusol suppository once a week is both beneficial and soothing.
Arsene
Thankyou for your informative reply to my questions.
It is very helpful.
I was hoping that you would say your meds regime leaves you feeling as fit as Popeye after he has consumed a can of spinach!
Like you, I find that mood and ability rise and fall unexpectedly
and that however we space the Sinemet, there are always down periods in the 24 hour day.
I find that reducing my food intake improves things, but we have to eat. Therefore I cut back on eating for just two days a week and this certainly makes me feel better.
I also gained weight when taking Mirapexin.
This was because I developed a mild obsession for chocolate and cakes.
As to constipation, I take one omega three fish oil capsule daily to lubricate the digestive system. This also helps with joint mobility. An Anusol suppository once a week is both beneficial and soothing.
Arsene
I have been on sinemet for 20 years, adopting a similar regime to Kate. Overtime I reached my current level of 7 x 62.5 spread out during waking hours, followed by sinemet CR a bedtime, then another CR when I wake up - usually around 3 or 4 am. I am female, 46 years old. Have had PD (undiagnosed in the early years) since I was 15. Larger doses of sinemet caused dyskinesias, almost from the beginning. My stuggle is now with stiffness and rigidity, especially in the evenings and getting to sleep. Just started a 2 mg Neupro patch, but not impressed so far. From reading the forum, I am definitely going to ask for madopar dispersible as back-up. As a fan of levadopa for so many years, I now realise I am a little out of touch with all the different combinations people try! Sally
My husband has been taking Sinemet rising to Sinemet plus x 3/4 daily . Along with the Rotigotine patch 6mg and a Sinemet Cr 250 at bedtime . He started about 6 years ago . I cannot honestly say they have made a great deal of difference ever either before or aft taking them . The consultant told me that it was like that for some people.
This lasts year I noticed that' he seemed to switch off I call it . he drops of for about an hour zany becomes very slow .
The consultant has agreed to reduce it now to Sinemet 100 , and he now only takes two during the day .
I also stopped the 10 mgAmitriptyline he took at bedtime .
There is a massive difference in his fluid retention n his ankles and tummy hAV e gone down .
I sometimes wish we could stop them all and start again knowing what we know now .
He wasn senate rated on Sinemet . Maybe he would have been best to start with the patch .
Any opinions ..
He is no worse on the reduction . and I think a little better .
Everybody is so different .
This lasts year I noticed that' he seemed to switch off I call it . he drops of for about an hour zany becomes very slow .
The consultant has agreed to reduce it now to Sinemet 100 , and he now only takes two during the day .
I also stopped the 10 mgAmitriptyline he took at bedtime .
There is a massive difference in his fluid retention n his ankles and tummy hAV e gone down .
I sometimes wish we could stop them all and start again knowing what we know now .
He wasn senate rated on Sinemet . Maybe he would have been best to start with the patch .
Any opinions ..
He is no worse on the reduction . and I think a little better .
Everybody is so different .