If you had to do it over again would you try to tough it out and avoid sinimet at all costs

or....

are you generally pleased with how levodopa therapy has mitigated/eliminated your symptoms despite the side effects.

I would have toughed it out and used other meds. I had no idea that levadopa had such a short effective lifetime (generally 3-5 years). The doctor that prescribed it to me was not the first that recommended I take it. I was resistant to taking it for many years after reading much about diskinesia and problems with starting it too early. She asked what could be worse the PD symptoms or the diskinesia I was worried about. In my case the dyskinesia was much worse than the PD. I now know I should have gone with my gut and research and waited until there was no other recourse.

As a result of taking L-dopa I spent hours vomiting, spinning, snapping my neck and back (which are my original disability), hours unable to talk or communicate, hours unable to sit and be still, confusion, inability to apply logic to simple situations, worse insomnia, and what I believe was full fledged addiction to this drug. The same dose every day could produce Dystonia one day and diskinesia the next and hold me prisoner for 3-8 hours. I had one doctor insisting I needed immediate DBS or an L-dopa pump as immediate surgical intervention. He also said I would be in a nursing home by age 52.

Up until a few months ago when I found out I don't have PD and that my symptoms were all caused by sinemet I even more strongly feel levadopa is not an appropriate first line treatment. It has a place but I think it is over prescribed and prescribed far too soon for people desperately and understandably looking to get some normalcy of function back. It does do a good job of doing that but at too high a price. I think it makes Dystonia worse faster (or in my case created severe lead pipe Dystonia). I don't know if the way I was overdosed caused the hard offs, if my body's response caused them, or if after 5 years I suffered the inevitable loss of L-dopa efficacy.

Regardless of whether I have PD or not I would have and should have waited. Given what that drug does to a healthy individual and reading what how people on this forum are being prescribed and dosed I believe many of their symptoms and offs may be caused by doctors prescribing too much without understanding how the medication works.

If this drug is our last line of defense but has a very short window of efficacy we should be using it as such. It seems as if doctors are now using it as a first drug and augmenting it until the doses are incredibly high. I am also quite alarmed that nobody I can find ever receives the news that they have been misdiagnosed. With Dystonia and bradykinenesia being the two big things doctors seem to be using to diagnose PD the stats just don't match. Dystonia and bradykinesia are symptoms of over 100 diseases or disorders. Numbers alone say that ALL of these cases CAN'T be PD.

In my search to get off this medication and the deadly risks that carries I can't find a single doctor with experience in getting people off L-dopa. Logic follows that people aren't being taken off. It makes me wonder how many people are being misdiagnosed and being disabled very early by this drug. We keep hearing that EOPD is much more devastating and progresses faster. It seems that too early or overdosing L-dopa could be a big reason EOPD is worse.

A friend that has a son with Lyme recommended the video “Under our Skin”. All of my symptoms could also be due to Lyme and I did have meningitis of undetermined origin about the same time I was diagnosed with PD and spinal surgery. You can rent it on Amazon or it's on the watch instantly part of Netflix if you are a member. You can join Netflix free for a month if you are not a member and have unlimited instant watch video. Don't try and watch it free (there are many links with viruses that offer the video). Just pay to rent it or do Netflix and be safe. There is also an episode of Mystery Diagnosis that covers Lyme.

Not that Lyme is the answer. Just that there are MANY answers but nobody ever gets different answers. There are many types of Dystonia and many different types of bradykinesia. None of this was ever discussed with me, only PD. My symptoms in retrospect were atypical for PD but more than 10 neuros fell right in with the diagnosis without question. I think this should give the PWP community reason to pause and second and third opinions.

PD diagnoses destroy careers, marriages, and lives. Before taking L-dopa I think we should be asking what else do you have to offer first. If PD diagnoses are made partially based on the reaction to medication then why is it always this medication. It's potentially fatal to stop taking once you start and it's been torture for me trying to stop. L-dopa seems to be a self-fulfilling prophecy. I think if more people waited to see if they progressed withOUT L-dopa there might be a lot more re-diagnosing than there presently is. Right now there apparently is NO re-diagnosing.

I was not pleased with the way it handled my side effects. It seemed to make me much worse. Now in retrospect since it caused all of my side effects I think it was the wrong decision for me to make regardless of my diagnosis. There are so many safer drugs we can use or try before we go to this drug. There is a risk of NMS (neuro malignant syndrome) just from taking the drug (not just from stopping it). It can occur spontaneously. Out of all the classes of drugs that help with PD it seems fewer and fewer people try them before going full on ldopa. This seems very backward to me.

Frankly I think a great deal of severe dystonia is caused by ldopa. It was for me. Now that I've tapered down a lot I no longer have dystonia or dyskinesia. Stopping this drug can be fatal, cause organ damage, is extremely painful, and clearly not understood in my experience. L-dopa can be a wonderful drug for some patients but early onset or early in the disease I think it's a mistake. As a patient community we should be asking harder questions of these doctors that prescribe so soon. We should also not be so desperate to be normal that we lose sight of the ramifications of our decisions and do the research.

i waited 3 yrs to get to a neuerologist and went on sinemet 7 yrs after diagnosis - total of ten yrs. now 20+ yrs later i'm completely addicted and hate ths illness with a passion.

pd = drug addiction

I knew nothing about l-dopa at all when I was diagnosed 8+ years ago. I was prescribed a low dose straightaway as a challenge. I have never been on any other PD drug except entacapone (comtess, comptan). I was not told anything about sinemet, or about PD, though I learned fast enough on my own.

When I went back after 2 weeks and told my neuro that his medicine had worked I was initially prescribed 3 x 100/25 per day but it always wore off noticeably. I was then prescribed 200/50 CR at night to help with the wearing off. It did help but made me very forgetful and unmotivated. Also had a lot of weird dreams, so on discussion the dose was changed to 100/25 plus 100/25CR three times a day instead. A different neuro told me never take sinemet at night.

(I only once increased from this - I was in France working an 18 hour day, and added an extra dose for a few weeks. Returned to the UK and stopped the extra immediately, not knowing any better. It was bad, and I had about 2-3 months of real struggle. It was a big price to pay. I had all my original symptoms and more, I could hardly move, was unable to hold a thought for long, and my numerical ability disappeared and has never really recovered fully)

I then stayed on the original regime until 3 years ago when wearing off started to become a big problem and I was not really getting good on time. My PD nurse specialist reckoned that I was rather under medicated, and she watched me wear off when she visited with me. She arranged for my neuro to prescribe entacapone which I now take with my sinemet.

By the time she visited next I had stabilized with the new addition and it was clear that a lot more dopa was getting to where it was needed, so I had reduced my intake to 4 1/2 tabs a day (with a little advice from people here on the forum), and was better than I had been before. I am now on 5 or 5 1/2 depending on what I do. I am fairly stable and in the mornings get around 20-30 minutes where I am not too bad before I need meds.

I have had dystonia since before going on medication, and have peak and end of dose extra movements that only really started this year, and do not happen unless I am walking. I haven't got a name for these, they are just odd movements that are only a bit uncomfortable. I keep telling myself they are not dyskinesia, as I don't want that to happen. I have quite a bit of hesitation too, that does not seem to have a pattern to it. Occasionally I have a sudden move on, like at bunny with new batteries, except its all fast steps instead of big jumps. I guess this is festination. No pattern there either.

I feel lucky that I have not had a lot of problems with sinemet. I also feel very lucky not to have been on agonists, or on a combination of meds.

The difference between me on sinemet and not on sinemet is huge. It is also very noticeable if I run out of entacapone. Since adding it has become less crucial for me to be really strict with timing, and I can let things slip by anything up to an hour before needing my next dose.

Just recently I have noticed that trying to turn in bed is getting as bad as it was before going on medication. My cat loves to sleep on me, and that does not help. In fact she feels like a large travel bag, and first thing in the morning it is getting difficult to move. Once I am upright it is only bad going down the stairs. If I take a little sinemet this is better - but I lose a few hours of sleep.... no easy choice if you never get more than 5-6 anyway.

I had symptoms for around 7-8 years prior to diagnosis and was extremely slow and stiff at that point, with a lot of pain, bladder issues, and waking up almost incapable of movement. I had been tested for everything under the sun. Overall I am better than I was then, but have become less focused, and a lot less able to multi-task. I have a lot less energy and get fatigued very easily. My sleep patterns are dreadful which is why I am writing this now (probably why it is so long )

I guess sinemet has worked for me. Or to be more precise it has helped with rigidity, balance and slowness. Not with the other things. And there are things that would not be there if not for medication. It never did do that amazing speeding up thing that you see in videos, with huge long strides..... it has only ever been an 80% med. And it has had me worried at times. But nothing like Paula and DoGma's experiences.....

The biggest problems are the inconsistency, and the constancy of wearing on and off, and sometimes the dose failure.

I am not sorry that I started on sinemet when I did, though if I had known more about it I might have run a mile. (well, a very slow mile) I always hated taking pills of any kind, a painkiller for a head ache or tooth ache was as far as I let pharma get to me.... But it allowed me a few more years working that I would not have had otherwise, and a little time to prepare myself for not being able to continue in the job I loved. In the end the thing that made that impossible was not a motor symptom at all, but the loss of being able to multitask, something I was once very good at.

As a complete aside, from early this year I was not feeling great, had a lot of pain in my legs and developed a nasty and rather large lesion on my leg. It felt as though I was progressing, if you can call it that, downhill. After a lot of to-ing and fro-ing from a number of inept doctors at my practice, a lost letter of referral, and 3 months where I felt very bad, I finally managed to get an appointment with my all time favourite doctor who decided I probably had psoriasis and some kind of systemic infection. So, several days later on antibiotics and steroid treatment I am now feeling a lot better. Both legs have stopped giving me problems (?) and I have more energy than I have had for quite a while........and even the PD seems somewhat better..... I have had this happen a few times before, and believe that in some way my PD is inflammatory, and that antibiotics, and anti inflammatory things help. But like I say I hate meds, and do not know whether I would take such drugs in addition to the ones I am already taking......

I would have held off, I was showing signs in the way of my left arm stiffness but I had all the functioning and strength in my arm. Less than 6 mos later I was deteriorating badly. I think of it like this, when an athlete takes steroids their body won't make as much testosterone cause its already there. This is a downhill slide, making us more dependant on more drug to get the same effect. Dammit, I had a life!!

Twenty years or so into this. The first ten were under the illusion of essential tremor which changed to PD about 2001. For reasons that I will go into in a moment, I have some doubts about the diagnosis.

Started on Requip immediately. No attempt at patient education or anything else. Almost criminal in retrospect. Added sinemet shortly thereafter. Requip and I got along relatively well. At one point I was taking 32 mg/day plus 800 mg sinemet. Started the Dk dance and by elimination found Requip to be the culprit. Quit it pretty much at once although I know you shouldn't but I seem to have gotten away with it. Been six months now.

I am currently living on levodopa/carbidopa 1600 mg per day with minimal side effects and intend to whittle that back as some other things stabilize. It is these "other things" that are giving me pause now. One is gastroparesis which has long been a factor and must be handled gently.

The other one is a bizarre problem with potassium shifting back and forth between being inside the cells and being in the bloodstream. In the former state nerve and muscle function are both disrupted and I am near total paralysis. The things that trigger it include (but are not limited to) adenali8ne surges and insulin surges. Adrenaline does NOT give me the power to leap tall buildings the way it is described in the literature. Just the opposite. And small, diabetic-style meals are a must.

So, what does that have to do with levodopa/carbidopa and PD in general? Maybe nothing but maybe everything. For example, my reaction to adrenaline is much more in line with what many of us experience when something like confrontation is encountered. And the insulin reaction to ldopa has been known since the Thirties.

And there is a study on Medline by a team led by Jill Smith that showed that ldopa blocks the ability of muscle to take up glucose from the blood which would thus mean more insulin to trigger my problem. Ms. Smith found that stretching the muscle corrected the blockage and it does seem to dothe same in my case if done in time.

So, my current strategy is to stabilize the situation and keep on paring down the sinemet.

sure i waited long as possible before any meds, maybe 6 years before any. can't tolerate agonists so my only choice is l-dopa. try to stay below 600mg/day so for the last 2 years on it it works well. tradeoff is hours of being very uncomfortable and having minimal mental and physical functioning in the early morning and evening when it's worn off. would i recommend someone start on it? i'm no expert but i feel i spent far too long trying to "get used" to mirapex.

my advice? exercise. i believe it slowed my progression and currently it is therapeutic. i lift weights, use a recumbent bike and a portable stair stepper.

I can relate to the 600 mg per day ilmit..A few weeks ago, I tried 800 mgs of Stalevo per day, and after 3 weeks I cut back down to 600, and decided to just deal with the of time..It is certainly is better than 3 hours of dyskinesia every night, and muscle cramps in my right arm and leg, that are at their worse when I try to lay down

That was more than 10 years ago.

My current anti-PD regimen is 1 25/100 immediate release carbi/levo plus 1 50/200 CR carbi/levo daily at 5-hr intervals. That adds up to a total of 900mg carbi/levo daily, but actually less, since the CR part is probably only 60-70% absorbed.
I also take 100mg amantadine and 300mg ubiquinol. I still believe in dextromethorphan, which I take 3.5-4mg of faithfully each night at bedtime.

I continue to progress slowly, with DK present but not uncontrollable.
Early mornings, pre-meds, and late evenings, after 10pm are most troublesome. Festination and postural instability at "off" times. Freezing and falls not currently a problem.

Dependable "on" time is about 16 hours, allowing regular 1-mile walks with the dog, mowing 1/4 acre lawn each week, and pretty much unlimited mobility while on.

Bottom line, I'm currently pretty satisfied with my situation.

Robert