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?
The side effects of Sinemet have me p... - Parkinson's Movement
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.
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.
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.
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.....
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.
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)
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.
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.
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.
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.
Thats just about our complete the list of PD meds. Not fair!
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?
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
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.
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.
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 .
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.
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?"
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.
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
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
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?
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
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.
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
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
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 .
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.
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
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.
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.
I do not want to be sued, I have enough trouble dealing with PD already ;O)
God bless you man....
Please try this fightingparkinsonsdrugfree.....
There are reports that poeple doing this eventually gotten off their meds and reverse the PD.
Hope it helps .
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
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.
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.