The side effects of Sinemet have me prett... - Cure Parkinson's

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The side effects of Sinemet have me pretty frightened.

pomo profile image
pomo
97 Replies

The side effects of Sinemet have me pretty frightened. I'm hoping to stay on Pramipexole as long as possible (its side effects are bad enough) In any case, isn't it better to put off the Sinemet as long as possible? The sooner you start it, the sooner it loses its effectiveness , right? Or am I mistaken?

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pomo
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97 Replies
Hikoi profile image
Hikoi

I have the opposite feeling, agonists are more scary to me than LDopa.

PatV profile image
PatV in reply to Hikoi

Based on horrible experience, I agree. I wish I had tried Azilect before sinimet but I don't think it was available.

tlongmire profile image
tlongmire in reply to PatV

I take Sinemet and Azilect but wonder if I really need both. My movements are still slow even with the increased dosage so I'm thinking about backing off the Sinemet by a half tablet each dose.

cabbagecottage profile image
cabbagecottage in reply to Hikoi

You are probably right Hikoi I dread him having to go in as he is especially with all the other bugs that can be picked up I while in there . We live in the UK . He hates not having me around . That's not to say that I don't get out I do have some me time .

allan2485 profile image
allan2485 in reply to Hikoi

i agree

while taking Mirapex I passed out TWICE while driving on the interstate

and fell out of my chair at work

Hikoi profile image
Hikoi in reply to allan2485

Allen

Mirapex is a dopamine agonist drug (different to sinemet). I hope you let your doctor now. Sleep attacks can be a side effect of agonist meds.

Norton1 profile image
Norton1

Hello Pomo,

I take Sinemet and get on with it very well. It appears to me that it is only what you have read that puts you off, so how do you know what adverse effects it will have on you. I would rather be taking this Levadopa/carbidopa tablet as opposed to a dopamine agonist.

Like all medications the effect wears off in due course and you will either have to increase the dosage and/or possibly add something else. At this time I am experimenting with cutting my Sinemet down and adding mucuna pruriens which is working well for me. I got the idea from 'Allnatural' who posts on this site from time to time.

Regards

Norton

bmakla54 profile image
bmakla54 in reply to Norton1

Norton, how much sinement are you decreasing at a time to titrate down? I am interested in the mucuna pruriens too.

Thank you,

Bmakla54

Norton1 profile image
Norton1 in reply to bmakla54

Hello Bmakla54,

Good to hear from you. In answer to your question I have gone down from 2, 25/100 sinemet three times a day to half a 25/100 tablet three times a day. I take the sinemet for the carbidopa element to help with the mucuna pruriens absorption. The amount of MP I am taking each time is 10ml which is a dessert spoonful. I get quicker 'on time' and a perceptible improvement compared to when I was just taking sinemet which in itself was good enough. One slight downside for me is that when I come 'off' it happens quite quickly. I have stopped taking all vitamin and mineral tablets which I have done on and off for years with the exception of a magnesium tablet and I feel better for it. You can do too much at once in my opinion.

Hope this helps. Come back to me if you have anymore questions.

Norton

bmakla54 profile image
bmakla54 in reply to Norton1

Thank you Norton,

I also take 1mg azilect once a day....would I have to stop that?

BMakla54

Norton1 profile image
Norton1 in reply to bmakla54

Hello again BMakla54,

Your question has put me on the spot as I'm not on Azilect nor a doctor. I know you travel around, but I feel that you should consult your neurologist before acting. From my understanding, Azilect extends the time that other medications act within the body. Why not consider putting the question on this or some other Parkinson's website 'is there anybody taking Azilect and Mucuna pruriens and how effective is this combination'? But, do consult your neurologist, before altering your medications.

Regards

Norton

bmakla54 profile image
bmakla54 in reply to Norton1

Thanks Norton, I will investigate......I know my neurologist will not be very knowledgable about alternative therapies.....in fact he takes a dim view. It is surprising I find my fellow PWP know more sometimes than the mainstream medical community......especially when it comes to their own bodies.....

BMakla54

Emily9428 profile image
Emily9428 in reply to bmakla54

Ditto

ddmagee1 profile image
ddmagee1 in reply to bmakla54

I hate to say this, but, actually, PWP are more aware of what's happening exactly, with their bodies, and know what to do to help themselves, because of the experience of what they have to do, to relieve themselves of troublesome symptoms. In other words, we patients are the true experts on knowing the disease of Parkinson's. Therefore, our insight and perspective is different then that of those, in the medical community. Having input from Doctor's, having the medical training and expertise to diagnose and treat PD, along with the input from PWP, shared within this forum, is helpful and gives us many ideas on how to help ourselves, to deal with having Parkinson's in our daily lives.

maidar profile image
maidar in reply to Norton1

Does anyone know if I miss a dose of sinemet if I should double the next amount?

in reply to maidar

no

ddmagee1 profile image
ddmagee1 in reply to maidar

No

Rejuvem profile image
Rejuvem in reply to Norton1

mucuna pruriens is the herb that Levadopa is extracted from and has been used for thousands of years to treat PD in India.

What most people don't realize is that the NIH has studies that shows it's more effective than the Levadopa / carbadopa combination pills (Like Sinmet) with very minimal side effects. (Levadopa by itself can cause Nausia and Vomiting and Carbidopa, invented to relieve those side effects causes your body to stop utilizing Vitamin B6)

jenniferdunstan profile image
jenniferdunstan in reply to Rejuvem

What dosage of mucuna pruriens are we talking about? I was on mucuna pruriens for several years but it didn't prevent symptoms. Perhaps the dose wasn't right...

larry33b profile image
larry33b

I've been on Sinemet for 12 years. Every case is different. Go for it.

tlongmire profile image
tlongmire in reply to larry33b

How much Sinemet do you take?

larry33b profile image
larry33b in reply to tlongmire

I take 25-250 six times a day and Amantadine 3xday.

tlongmire profile image
tlongmire in reply to larry33b

Thanks I was diagnosed 3 years ago. Currently on 2 tablets of 25/100 4 times a day with 1 Azilect.

in reply to tlongmire

tlongmire

Are sinamet and stalevo the same thing because in stalevo terms that looks like a very low dose. Maybe I'm confusing my £s and my $s.

bartogirl profile image
bartogirl in reply to

My husband and I were under the impression he was taking sinemet200/ENTA 6x a day.However,in very small letters on bottle it says stalevo. Are they the same?

allan2485 profile image
allan2485 in reply to larry33b

Im on the same regimen

except I take 6 amantadine a day- one with every dose of sinemet- It keeps me from feeling too "wound up"

Rosabellazita profile image
Rosabellazita in reply to larry33b

Do u gave the side effects...dyskinsia?

Rosabellazita profile image
Rosabellazita in reply to Rosabellazita

I meant..do u have

gurdeep11 profile image
gurdeep11 in reply to larry33b

in what way it helped you, is it losing effect now

bartogirl profile image
bartogirl in reply to gurdeep11

His Stalevo 200 6x a day and Azilect are now doing nothing,All it is doing is making his hallucinations worse and his memory is lousy and confusion is sad to see.

shall1019 profile image
shall1019

I did have a bad experience with Sinemet - my blood pressure went sky high - over 200 3-4 times so I had to quit. I'm in my second year of Azelect and seem to e doing okay.

maryalice profile image
maryalice

We are all so different. I've been on agonist for 10 + years and haven't had any problems with it. I'm also concerned about the side effects of Sinamet. I don't know if it's true, but I've heard it works well for about 5 years and then you start having problems. Has anyone experienced this?

=

Hikoi profile image
Hikoi

Hi maryalice as you say everyone is different and you will have read many people on here who have been on sinemet more than 5 years with no problems like Larry. What problems exactly do you mean?

Your problems with hands painful most of the time and fingers lock sometimes and toes curled under all sound painful and would be helped alot by sinemet Im sure.

Hikoi profile image
Hikoi in reply to Hikoi

Oh I see you experienced depression. Thats bad luck.

maryalice profile image
maryalice in reply to Hikoi

Thanks for your input. I'm doing okay now, so I don't want to change anything. I experienced depression when I tried Sinamet when I was first diagnosed. It went away after I stopped taking it. I appreciate your help. Blessings.

Jocee profile image
Jocee in reply to Hikoi

I've been on Sinemet for 25 yrs with no problems. My dose has been increased thru the years. Doesn't work as well as it did years ago, but still works ........

Karen3 profile image
Karen3

I have been on Sinemet 12 years=n0 side effecfs

tlongmire profile image
tlongmire in reply to Karen3

How much Sinemet do you take?

Karen3 profile image
Karen3 in reply to tlongmire

2 25/100 6 times a day and one 50/200 at bedtime

tlongmire profile image
tlongmire in reply to Karen3

Thanks.

Joanne_Joyce profile image
Joanne_Joyce

I've been taking Levodopa for almost 2 years now - first in Sinemet and now in Stalevo. I'm getting worried about how I keep loosing my hair. I read that hair loss is a side effect of Levodopa. What will happen as I continue taking it? Am I at risk of going bald? Yikes! Otherwise I'm OK with it but I must keep on the lowest possible dose to avoid dyskenesia which I suffered from when I was taking a higher strength Sinemet.

Lindylanka profile image
Lindylanka in reply to Joanne_Joyce

If you are losing hair I would get a few other things checked before you pin it onto sinemet. Thyroid problems in particular can cause hair loss, as can some deficiency conditions, in particular B12/pernicious anaemia. Worth getting them checked out and asking your doctor to test for any other potential causes.

Joanne_Joyce profile image
Joanne_Joyce in reply to Lindylanka

Thanks so much.

JackieMJ profile image
JackieMJ in reply to Lindylanka

The hair loss is caused by the Sinemet. So is depression and many other things. It is not just from reading about it. I know from experience, plus my neurologist agreed and took me off it. I don't know what he will put me on next.

Hikoi profile image
Hikoi in reply to JackieMJ

Jackie

Hairloss is a possible side effect of all PD meds it seems. I just did a quick google search and these PD drugs all showed up with hair loss problems for some people.

Sinemet

Entacopone

Amantadine

Ropinerol

Mirapex

Selegiline

Rasageline (azilect)

Stalevo

Thats just about our complete the list of PD meds. Not fair!

cabbagecottage profile image
cabbagecottage

my husband has been on Sinemet for a bout 5 yrs e eventually adding a Rotigotine patch .

He is now having dreadful time time drooling and dropping off . I have noticed he does it after taking his Sinemet might be coincidence .

Pelley profile image
Pelley in reply to cabbagecottage

I was having the same problem......First off, Ive taken Sinemet for 10 years At one point, adding Requip, Compton, and tried the first patch. At my worst i was up to 32 pills a day in an attempt to find something that worked.

I had DBS 2 years ago and am now just on Sinemet.

During my combination of Sinemet and agonist REquip, I would experience a time that I would feel like I fell of the face of the earth. It would usually subside as the first glut of medication was getting dissolved into my system. Try spacing out your dosages of the agonist and of the Sinemet maybe?

Rosabellazita profile image
Rosabellazita in reply to Pelley

Sounds very scary

PatV profile image
PatV

I've been on sinimet maybe 6 years and recently had to up the dosage--100/25 every 3 hours plus 1/2 sinimet time release at bed time . I take with a snack. If I take it with a protein snack, it cuts absorption and I am not as like to get dyskinesia.

cabbagecottage profile image
cabbagecottage

Have actually reduced the Sinemet plus to the 100 and spaced them to x 3 daily he takes the 250mg CR at night The Rotigotine comes as a patch which we change daily it s 6 mg . Some days he sleeps most the day , that is if you can call it sleep .

Hikoi profile image
Hikoi in reply to cabbagecottage

Cabbagecottage

In my experience, agonists eg Rotigotine make me sleepy and sinemet usually wakes me up. I am more likely to drool when im low on dopamine than when i have just been medicated. But also more likely to drool when asleep and mouth falls open, so elegant! I was just reading PUK info before I wrote this and saw this

"If drooling is mild I often use low dose amitriptyline, .... ". Has your husband been on amitriptyline or any other med and recently stopped it? So many possibilities its like being a detective!

Reply to this

snooky profile image
snooky in reply to Hikoi

Yours is first time I have seen anyone address drooling. For past several days I seem to be going down hill fast! Very disappointing. Any suggestions? Thought maybe I was having a stroke or TIA. Don't know how I would know the diffference at this point. Suddenly symptoms I had only on left side before were all over, worse, and other symptoms added: Strong tingling in both arms and legs, with numbness in hands and feet. Made it difficult to walk and use fingers. Loss of balance drastic. Had cramping in feet, noticed sensation like nerve pinched in elbows and other joints. Was drooling. The next morning was scary. I awoke with urgent need to void. Could not throw my covers off or take hold of grab bar on bed. Condition began to improve when I got 2 tablets carbo/levo 25-100 in me. The nurse at the walk-in clinic noted my high blood pressure & meds. The doctor questioned me extensively what I meant by "weak" and "vision blurry", had me walk a few steps and read off flyers on his wall! He ordered complete blood workup and referral to eye clinic after nurse had me read from eye chart in hall.

Hikoi profile image
Hikoi in reply to snooky

Snooky as you mention walkin clinic I'm presuming you are in the UK? It sounds like you could do with support right now as you negotiate the medical system.

It is impossible to say what is happening to you even though you have written lots of information. There are so many possibilities and as well PD is very complicated involving just about every system in our body. Just some observations, Parkinsons affects our eyesight, weakness is often a wearing off sign but can be lots of other things.

Do you have a support worker from PUK. If so I would contact them to home visit you, hopefully they will stay in touch while you get this sorted. I would do that first.

if you dont have a support worker i suggest you ring PUK helpline 0808800030. and tell them what is happening. They can arrange for the worker to visit and they can always get a nurse to ring you back too.

The information about the helpline is on link below. They are open until 8 tonight. You may feel hesitant to ring but I encourage you to do so now. Whatever is happening you are worried and could do with some more advice.

Good luck and hope to hear what happens.

parkinsons.org.uk/advice/he...

snooky profile image
snooky in reply to Hikoi

I am in U.S.

Hikoi profile image
Hikoi in reply to Hikoi

This is the link to a USA helpline

parkinson.org/helpline

cabbagecottage profile image
cabbagecottage in reply to Hikoi

Just picked up this subject you posted 10 months ago My husband was on Amitriptyline and yes it did make his mouth dry . I only stopped it because he was so very slow / switched off I rightly or wrongly though the Amitriptyline might be making it worse . It hadn't he is still as slow switched off . Do you take the Amitriptyline at night and during the day and what dose . he was last on 25 mg .

Hew as getting a lot of sleep talking and sometimes hallucination as well . this seems to have subsided .

Pete-1 profile image
Pete-1

Please see my answer to another question on this site, namely "If Sinemet only works for so long, isn't it a good idea to put off starting on it as long as possible, or is there an element I'm missing?"

That question is similar and it will save me answering it all over again or copying and pasting it. Also other peoples postings on that other question are also very relevant.

maryalice profile image
maryalice in reply to Pete-1

How do you find your question?

Pete-1 profile image
Pete-1 in reply to maryalice

Look near the top of the page and click on questions. In the list subsequently displayed is the question title that I have quoted in my last posting above and again here:-

"If Sinemet only works for so long, isn't it a good idea to put off starting on it as long as possible, or is there an element I'm missing?"

Pete-1 profile image
Pete-1

Right, Sinemet contains 2 chemicals, Carbidopa and Levodopa.

Carbidopa does its job without ever leaving the blood stream and is then eliminated via the urine a few hours after taking it.

Levodopa is a natural substance that is found in normal healthy brains. It is used in the natural process of manufacturing Dopamine. Dopamine agonists are not natural they are contrived in the laboratory. If there is likely to be a problem with either it is more likely to be with the agonist type of drug.

It seems likely that the longevity of Sinemet is going to be linked to the degree of progression of your PD and not to how long you have been taking Sinemet

So if your degree of progression by the time you reach retirement has got to the relevant point of Sinemet no longer being efficacious and you started taking Sinemet only 6 moths beforehand then your only going to get 6 months. If you started taking Sinemet when you are 50 then you may be in for 15 good or better years. 15 extra years of freedom from fear of falling, 15 years of being able to forget, at least for several hours per day that you are a PWP,15 years of being able to work, 15 years of being less of a burden on your family, friends and medical services.

Try it , if you have problems THEN STOP TAKING IT. You won't be carted off to casualty the first time you pop a Sinemet If you are given the right dose after 1 hour since taking a pill you will feel wonderful, a subtle warm glow all over, such relief, such a feeling of release from fear. You may be transported back to pre-PD existance for perhaps for the first time in years.

The first time I took a dose that was effective the relief was so great I felt like bursting into tears.

Blondir profile image
Blondir in reply to Pete-1

Peter -1 I have to say thanks for the information you provided - its informative and helpful - (see my response overall) as to bursting into tears I do that frequently - another reason for seeing a therapist

Kathleen profile image
Kathleen in reply to Blondir

The crying is part of the Parkinsons , I would just burst into tears at the slightest thing, my Dr.. prescribed NUEDEXTA 20mg at bedtime .It works ! I was never a cry baby and now I am my old self.I have had parkinsons for 10 years. My neuro knew right away what was wrong . I was going to a movement specialist for 8 years and he never told me that and I would go into his office crying. I went to a new Dr. and he is the best. Also you can have uncontrollable laughing or crying. Best of Luck

Rosabellazita profile image
Rosabellazita in reply to Kathleen

Does that drug help u sleep.what is it for

ddmagee1 profile image
ddmagee1 in reply to Pete-1

Exactly how I felt!

Kadie57 profile image
Kadie57

I just started Sinemet, REASON?? The genertic Carb/levo after taken for 9 yrs would not absorb in my system. Then my doctor I switched to a Nuepro 6 mg 24 hr patch, Getting rid of Mirapex... The sinemet is stronger so we had to adjust doasge, the patch is wonderful. I know there are side effects but is the life your given taking the meds worth it?? I don't function well with out meds, so to not fall and be able to moving, quilting, think clearly is worth it to me. I have a life to live, Pd does not own me, however if you are in constant worry mode that effects your PD ..........NO ONE HAS TO TAKE ANYTHING THEY ARE AFRAID OF, talk with you neuro, Gods blessing for you. Kadie

mccshe profile image
mccshe

Taking Mirapex 4.5 Extended release once a day,, Sinemet 25/100 2 tabs three times a day, Azilect 1mg once a day. Feel sort of ok I guess. Had to leave work 3 months ago on temporary disability, forced to by my employer. Wanting to go back but honestly I don't think I am able. My symptoms ? Frequent inability to sleep, so of course I am forgetful and have difficulty concentrating and feel fatigued often. Pain always, anxiety sometimes, stiffness mainly in the a.m. I don't know about going back to work feeling like this. Anyone else on this combination of meds?

ned-kelly profile image
ned-kelly in reply to mccshe

mccshe I was started on sinemet one a day went stiff in the legs changed to azilect a lot less problems take magnesium and all stiffness under control.

Blondir profile image
Blondir

Only just picked up on this thread - thanks to Pete -1 for his explanation of the chemistry - I am now even more convinced that Neuropologist PD Specialist Nurses all do their best and accommodate the variations but don't really understand any more than PwP's -

I am increasingly concerned that my Medication is not 'right' - I have been on 24mg Ropinerol (max recommended dose) for nearly 3 years (started on 12mg 5 yars ago when diagnosed), 1 Azilec and 3 x 25/100mg Sinemet and 1 x Half Sinetmet slow release at night .The major concern amonst the professionals is a 600mg per day ceiling for Dopamine substitutes (Sinemet) and I am 1 tablet away from this 'limit'

I have several of the side effects given for Ropinerol - including mild OCD - I am controlling it but have an appointment with a therapist next week - my GP and PD Nurse disagree on the need for this !! I get 'Coat Hanger Pain' and Ergonomic Hypertenson (Blood Pressure drops when I stand up and the room spins for a few seconds) -

Is it me or has anyone else suffered similar problems

Pete-1 profile image
Pete-1 in reply to Blondir

Hi Blondir - thank you for your kind words.

Ropinerol is one of these 'ere Dopamine agonists. There has been mention in the media about this class of drugs leading people to exhibit unusual, out-of-charactere type of behaviour such as gambling or maybe OCD.

honeycombe3 profile image
honeycombe3 in reply to Blondir

Blondir,

Nice to meet you in the flesh at the CPT meeting in London. A couple of points:

1/ I am in my final (10th) year of Birmingham University's medical trial which involved being randomly allocated 1 of 4 drugs of choice favoured on dx by GPs & consultants. I was given Sinemet & having agreed to take it for a minimum period of (I think) 1 month I thought I was dying & so did my petrified friends & family. I fell & was dizzy constantly, fainted, fell asleep on the sofa etc etc. That was a low dose but I was only 56 & had very mild symptoms. At that time it was for me the wrong med. I have been taking it now for around 2 years & I need it.

2/ There are no rights & wrongs - if there were PD treatment would be much easier. I tried Azilect & it did not suit. I've taken Ropinirol since dx (after the Sinemet) & for me it worked well for 7 of those 9 years. I only got up to 16mg daily then had binge eating & fluid retention problems so slowly came down to 10mg which still suits. I now take Sinemet + (25/100) 4 or 5 daily with 1x1/2 Sinemet CR & 2 rescue doses of Sinemet 12.5/50 as needed, keeping me within the recommended limit.

If you suffer coat-hanger pain & it is mainly left side I'd ask for an angina check as my PD is left side & has twice masked pain from my heart. I had my 2nd stent fitted last week.

Do see a therapist - I use a hypnotherapist who is superb re OCD, sleep, panic & freezing.

Oh & by the way keep socking it to the powers that be in your area until you get some sense from them.

Blondir profile image
Blondir in reply to honeycombe3

Hello Honeycombe3 - good to hear from you again and it was nice to meet you and your husband face to face - I thought t was a very positive meeting - and here I am extremely negative and as low as I've been since I was diagnosed. I've just had a bit of a bad run through the summer and its kicking in again now - I feel guilty because shouldn't complain and there are PwP's who I am sure would love to feel like I do because its 10 times better than they feel . That's one reason this site is so good Pwp's worldwide support each other in a way no one else can and having read your reply its reassuring - Thanks for the comment on Coat Hanger pain - its a good description as it takes exactly that shape its not a 'pain as such, more stiffening and tightening of muscles when I get tired - making what you're doing take even more effort- I don't think its covering Angina - my wife has it so she can at least comment on that - I have to admit I on't visit the GP too often as I don't really want to know what else is not working - pretty sure I was assembled on a Friday from a box of spare parts

As to the battle - its now a phoney war - I sent a reply to my MP who forwarded it straight to the CEO with a letter telling her to reply to me - that was 4 weeks ago - absolute silence , not a word - which I think says everything and looks pretty bad in terms of awareness and patient interests - I'll give her to the end of December and ask for a meeting

Cheers

Rosabellazita profile image
Rosabellazita in reply to honeycombe3

Were all a bunch of guinea pigs being experimented on pd drugs

fronya69 profile image
fronya69

The answer is yes. it is for ur benefit . The longer u do not start sinemet, the better. It is still the golden pill for P.D. Especially since usually after 3-5 yrs. u build up side effects that sometimes worse than the disease. Such as dyskensia. I should no . Iv'e been on sinemet since 2001. It works great for walking better. I wish i had not started as early as i did. But it has given me yrs. of relief. That is just ,my opinion. Research my dear. Always go online, And use this web site. It's great! Don't worry u r not out there alone. fronya

cabbagecottage profile image
cabbagecottage in reply to fronya69

I wasn't on the internet when my husband was first diagnosed about 7 years ago . So wish I had been and known what I know now by reading all your posts .

He has been taking Sinemet along with the patch for all that time .

It has never helped and he has worsened . Don't really know if it's the progression and even been made worse by the medication .

I have wondered how OT would be if if slowly reduced the meds and stopped them . How long does it stay in the system .

I gave him his Sinemet 30 mins ago and he cannot clear his throat and switched off . almost as if in slow motion his thumbs stick up and twitch . This will last for a few hours generally until it's time for his next dose .

I could through them all in the bin . I won't of course .

Hikoi profile image
Hikoi in reply to cabbagecottage

Well meds are very complicated in Parkinsons treatment and stopping abruptly is potentally dangerous.

CC i know you feel the meds have made your husband worse and how are we to know otherwise but the disease is "relentlessly progressive" as I read when first diagnosed so how to decide what is caused by what is very difficult. Certainly I dont believe there is any proof the meds speed up progression.

All the things you describe are what happens when dopamine is low, so not enough medication, the slow movement and trouble clearing his throat and switching

off. If he only has his tablets three times day then he will be having problems because at his stage a Sinemet tab will last three hours at the most.

But your husband needs proper medical assessment to really know what is happening.

cabbagecottage profile image
cabbagecottage in reply to Hikoi

I agree with you all . it's a minefield and in the main we are left to our own devices most of the time . On top of that we are not the professionals . it's a learning curve .

When first going to the Drs consultants we are mostly frightened and not understanding what is happening to us They started my husband straight away on Sinemet but told him he was in very early stages maybe they were wrong at that time because after tarting them he never improved and gradually worsened with looking back more symptoms .

I am now waiting for a Parkinson's nurse to get in touch with is we have been trying to get one for seven years .

Don't you think it would be a good idea if they had An all day clinic where you could go spend the day , the doctors could then monitor you before and after taking the meds .

I am sure it would give them and us a better picture . Even save them money in the long run and we would feel more confident .

In our case I am hoping the nurse will visit the house and see how things are are home . I believe they are more easily contacted

Hikoi profile image
Hikoi in reply to cabbagecottage

Oh CC what a hard time you have. I wish there was more we could do! it is good you will have a nurse visit. Your idea of a day clinic is excellent. I think at the moment the choice for your husband is to be admitted to hospital to sort his meds out.

have you ever rung the support line for advice etc?

The ad says If you need to talk to someone, call our free, confidential helpline on:

0808 800 0303

You can ask to speak to a nurse and they will call back. They often can help sort things out by contacting people in your area.

I do hope you will try them. Best wishes.

cabbagecottage profile image
cabbagecottage in reply to Hikoi

I have rung them in fact it was their suggestion that I contacted our local support officer and she is in the middle of arranging for us to see the Parkinson's nurse .

Everything we have is from my own efforts so far .

Hikoi profile image
Hikoi in reply to fronya69

Fronya I think age might make a difference, i mean if you are 30 and starting meds you may make different choices than if you were 70 years and just staring meds. As well dyskenesia is more of a problem with younger onset PD. I agree with you, research everything.

Rosabellazita profile image
Rosabellazita in reply to fronya69

Im 66. Never started it yet but this tremor driving me crazy!

scottyt profile image
scottyt

Medical Marijuana, So simple drink eat or smoke or rub on relives pain stiffness and insomnia so simple and oh so good for you..before bedtime or anytime for PD relief. I do not sell Pot or represent anyone that does I have a Med card and buy from a state authorized facility….

Rosabellazita profile image
Rosabellazita in reply to scottyt

I agree..got to better than those prescription poisons! But not legal here. I wish.

redking59 profile image
redking59

In my experience you are right. I have been taking Sinemet (in low doses) for about 8 years. Since the prescribed amount has doubled. I try to take the least amount of ant-Parkinson's meds as possible. I could be more active if I took more, but I feel that this will shorten the time the medications remain effective. I know that this contradicts most of the literature about exercise, but if you have to increase your dose to exercise, I feel that are better off not doing so. In my experience, I feel that one should take the lowest dose of meds as possible along as you are safe ( i.e. walking, working, or driving ) but I feel that the lower the dose , the more time drug will have beneficial effects. I have also experienced that taking a combination of dopamine agonist taken in combination with a low dose of Sinemet, does much to reduce my symptoms. However, remember that all cases and symptoms of PD are as unique as the individual. Therefore, what works for me may not work for you. Also, be advised that I am not a Neurologist, so I cannot be held responsible doctor for any erroneous advice that I may give to you.

Hell....

I do not want to be sued, I have enough trouble dealing with PD already ;O)

God bless you man....

R.

ddmagee1 profile image
ddmagee1 in reply to redking59

Excellent advice, based on your experience redking59! I feel the same way, and have similar experience with Sinemet and exercise! God Bless You, and May the odds be ever in your favor!

Jocee profile image
Jocee

I have been on sinemet for 25 yrs. What side effects are you worried about? I need more than I did years ago, but it still works if I watch my protein.

wrench profile image
wrench

I was on pramipexole until I fell asleep driving car.Woke up in time but happened 6 times one day.I believe sinament can do that too!I'm not sure what to do now!

cabbagecottage profile image
cabbagecottage

For a number of years whenever we went OT the consultant I would tell him how bad my husband was but they sister he was doing ok and not showing any bad signs . I told them they don't come home with us . only see him for about ten minutes

gmunsot profile image
gmunsot

Could you tell me the side effects of Sinemet and Pramipexole, those are my treatmentn and y wish to know what can de happened before.

Thank you very much.

Guadalupe

gmunsot profile image
gmunsot

I would know the side effects of the medicines that you mention.

Are my treatmen and I wish to know.

Thank you very much

Guadalupe.

Kadie57 profile image
Kadie57

You re scared by side effects?? I m more scared of Parkinson and not being able to moving or frozen in public. Take the meds enjoy your life, find something else to worry about, our lot in life is PD don't sweat the small stuff!!

TL500 profile image
TL500

Please try this fightingparkinsonsdrugfree.....

There are reports that poeple doing this eventually gotten off their meds and reverse the PD.

Hope it helps .

Benjie-123 profile image
Benjie-123

my husband has had his sinemet increased from three to six, and the pramipexole stopped. Prior to this he did have off balance episodes, but since the increase has just slithered to the floor and occasionally lost consciousness. After reading any article on Sinemet on a medical site, everything point to this drug. plus he was gien fludrocortisone some time ago (before these passing out episodes) which seemed not to affected him. Now he has been put back on the latter, and told 'it will take a while to work'. I am worried about the sinemet!! J

Pete-1 profile image
Pete-1 in reply to Benjie-123

Never have I heard of Fludrocortisone being used to treat Parkinson's disease.

wikipedia says the following "fludrocortisone is the first line of treatment for orthostatic intolerance and Postural Orthostatic Tachycardia Syndrome (POTS). It can be used to treat low blood pressure." Nothing significant there then in relation to PD.

I have never heard of Pramipexole being used to treat balance problems for those who have PD.

If there is any PD drug that it might be wise to avoid then Dopamine agonists such as Ropinirole, or Pramipexole otherwise known as Mirapex, Mirapexin or Sifrol are the ones to avoid. The main reason to avoid them is the withdrawal is very unpleasant and can take a long time.

Sinemet or or particularly the ingredient in Sinemet called Levodopa remains the best most efficacious drug used in treatment of PD.

For those taking Levodopa for some years or in ever larger doses sometimes get trouble with dyskinesia and or hallucinations. There are other side effects but these 2 remain the most significant side effects.

allan2485 profile image
allan2485

you are mistaken

i started it 8 years ago and it is still the best medicine

studies have shown effectiveness for a long time -but like all the other drugs each person is different

Jocee profile image
Jocee

What side effects are you referring to? I have been on a generic sinemet for 27 years.

DonSImpson profile image
DonSImpson

I have had PD for about 2 years. I am 61. The previous doctor I had, treated it as essential tremor. My latest doc. put me on SINEMET. I don't think I could have gone another month. It was more miserable than anything I could have ever imagined. Now I have some chance at normalcy. So to make a long comment shorter, the only way anyone will get my SINEMET is if they pry it from hands.

ddmagee1 profile image
ddmagee1 in reply to DonSImpson

Exactly my feelings too, Don!

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