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MusicMan

Sinemet- disappointing results

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I have to say, I have yet to experience that miraculous, break-thru moment on Sinemet, where you suddenly realize..."so, THIS is what it's like to feel normal again."

In fact, as I have stated before, I think that sometimes I actually feel WORSE on it, and believe that I've suffered new PD like symptoms in a very short time since starting the medicine. Where before I had a little tremor in my right hand and some stiffness in my IT bands (I think maybe from doing hamstring stretches), now I have body aches, joint aches, and stiffness all over my body. My arches hurt and cramp, forearm muscles hurt and cramp, etc.

Could it be my PD just suddenly ramped up? Sure, but it seems awfully coincidental to taking this Sinemet.

Am I not taking enough? Maybe, but you would think I would see something positive from it that just wouldn't last very long, instead of feeling worse.

Anyone else have this experience with sinemet really not producing results that you would have expected?

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I have yet to experience that miraculous, break-thru moment on Sinemet

 

 

Sorry to say Bob, but that miraculous break-thru moment is the one you make for yourself. It doesn't come in a Rx bottle. I could tell you about mine, but I know you don't want to hear it again.

 

Fred

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MM,

 

So, why are you taking Sinemet if it makes you worse?

Why???

Because I have PD.

I'm told, I've read, and I understand that Sinemet is the "gold standard" treatment for PD.

What I DON'T understand is why I don't seem to be getting the benefit from it that the rest of the world is getting.

Am I not taking enough?

Do I take it at the wrong intervals?

Am I getting "protein interference?

Did my PD suddenly ramp up out of the blue, and I would have had issues no matter whether I took Sinemet or not?

 

The purpose of this thread is to see if any OTHER members had similar issues with Sinemet and what they did about it.

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MM--My husband has almost no tremor relief from sinemet.  He takes 2 ER and 3 IR per day.  He wonders why he's even bothering.  I tell him that although his tremor is still terrible, I do see some motor skill improvement. 

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Again, MM, have you weaned off to see if the symptoms you describe go away. If they do, you'll know for sure that it

is the medication. If they don't, then you could try titrating up the dose until you get the best benefit. When I

first started Sinemet, I weaned off several times just to settle the issue in my own mind. After two years of

experimenting, it was obvious to me that the Sinemet was helping and that my PD was progressing.

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Why???

Because I have PD.

I'm told, I've read, and I understand that Sinemet is the "gold standard" treatment for PD.

I am told, have read, and understand that Sinemet doesn't do anything to affect the disease, it only treats symptoms. Therefore, if your symptoms are made worse, why take it?

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Again, MM, have you weaned off to see if the symptoms you describe go away. If they do, you'll know for sure that it

is the medication. If they don't, then you could try titrating up the dose until you get the best benefit. When I

first started Sinemet, I weaned off several times just to settle the issue in my own mind. After two years of

experimenting, it was obvious to me that the Sinemet was helping and that my PD was progressing.

Good idea, Gardner. I see my MDS in a couple of weeks and will suggest that to him to see if he agrees on the experiment.

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Musicman.  I'm in the same situation as you.  I was diagnosed last Oct.  Started Sinemet about 2 months ago and don't see any difference.  Granted, my symptoms are minor at this point--slight left hand tremors,  cognitive issues, fatigue, slight clinching of my hands and feet.  Both my dr's told me I would feel "so much better" taking sinemet.  It just hasn't happened.  I also started Azilect  about 1 month ago and understand that it could take a few months to feel any different, if any.  But I'm constantly told that the sinement should be right away.   Not sure what to do at this point either.

 

Mike

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Hey Mike. Thanks for the response.

Yeah, in relevant terms, my symptoms are pretty minor too (or WERE...) My MDS expects me to be at 2 1/2 tabs of 25/100 every 4 hours by the time I see him on 8/10/15.

There's really no way I can substantiate taking THAT much Sinemet when my symptoms are/were fairly mild, and that I feel worse the more I take. I suppose it's possible if I did take that much, that I might HAVE that "break thru" moment, but I also might explode.

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Why???

Because I have PD.

I'm told, I've read, and I understand that Sinemet is the "gold standard" treatment for PD.

What I DON'T understand is why I don't seem to be getting the benefit from it that the rest of the world is getting.

Am I not taking enough?

Do I take it at the wrong intervals?

Am I getting "protein interference?

Did my PD suddenly ramp up out of the blue, and I would have had issues no matter whether I took Sinemet or not?

 

The purpose of this thread is to see if any OTHER members had similar issues with Sinemet and what they did about it.

Sinemet only helps me with certain symptoms. Mostly with tremors, and "slowness" /gait issues.

 

Muscle pain, stiffness, and cramping (Dystonia) is helped tremendously by Baclofen.

 

REM sleep disorder is eliminated by Klonipin.

 

Mood is tremendously helped by Celexia. (anti depressant)

 

Exelon takes care of some of the memory issues and visual halucinations.

 

Your milage may vary.

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Musicman,

What  were your PD symptoms before sinemt?

From what I understand, Sinemet has limited effects on PD as a whole, but works very well on some symptoms (tremor), moderately helpful on others (dystonia, cogwheel rigidity, gait imbalance), Mildly helpful (constipation, eye dryness) and not at all on others (pain, aches, cognitive, bradykinesia).

 

As for why the rush to Sinemet, I think it's because Doctors, like the rest of us, are human.  They see another person having trouble and they know they can't do anything real (prgressive, uncurable) but maybe the Sinemet will help some of the discomfort.  That's my guess.  When DH went on Sinemet at the end of June, I was skeptical, especially as the reason was the appearance of dystonia.  But his rigidity had slowly been advancing, and gait insability had been creeping in.  Who knows if the Sinemet has helped, but after a month, he does move a little better, I am no longer so concerned about stairs.  Dystonia remains on occasion, and constipation is no longer a grave concern every few days.  So he is more comfortable.  Call your MDS office and tell them about how you are feeling.  The offices have nurses who are skilled in what they expect and hope for in symptom control.

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I'm not on medication yet because my quality of life has not been affected yet.

 

My MDS is very happy that I can hold off on beginning meds. She agrees to not begin until I am experiencing more problems that interfere with daily living

 

I really believe that my exercising held off symptoms WAY before they presented. I might be a slow progressor, I don't know, but I have a feeling if I began meds that my symptoms would get worse. I have no proof ... Just going on gut feelings.

 

Attribute swimming and daily stretching to no ridigity

 

The 2 biggest symptoms are right hand tremor and fatigue. Very little to no ridigity ... Stiffness but believe that's age and arthritis more than PD.

 

I'm getting some OT exercises tomorrow for shoulder pain (which is annoying but not life altering.

 

I agree about experimenting without meds.

Edited by swimmer

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I'm one of those who tried sinemet but found the side effects more bothersome than the PD - headaches, stomach problems, spacy feeling, aches all over, crying, fatigue, etc.  I guess I was not very persistent as I stopped after only 2 weeks.  My mother passed away during that time and I felt crappy enough without the extra burden of sinemet.  Some of the crying was due to my Mom but certainly not all of it.  I just couldn't cope with both at the same time.  I couldn't see that it did much of anything for me except making me feel worse.  Later tried Azilect which left me with a constant headache but not the host of other bad side effects of sinemet.  Azilect had about the same benefits as sinemet - little to nothing.  Currently taking Neupro patches.  Not sure it is very helpful but the side effects have been few and it is easy to take versus the dietary problems of sinemet.  Doc wants to up the dosage slowly given my reaction to other meds.  I'm trying to be cooperative.  I've yet to find anything other than Benadryl and an illegal herb that even touches my tremors.

 

Perhaps as this disease advances I will give the sinemet another go in the future.       

Edited by lahdedah

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Musicman,

What  were your PD symptoms before sinemt?

From what I understand, Sinemet has limited effects on PD as a whole, but works very well on some symptoms (tremor), moderately helpful on others (dystonia, cogwheel rigidity, gait imbalance), Mildly helpful (constipation, eye dryness) and not at all on others (pain, aches, cognitive, bradykinesia).

 

 

Hmmm....this kinda goes against a lot of what I had heard re: Sinemet. Many people say it doesn't do much for tremors at all. My main symptom WAS right hand tremor, with some moderate stiffness in legs, as well as sleep issues....certainly bearable but annoying. I had NO gait issues, balance issues, and only a tiny bit of cogwheel in my right wrist. But my MDS wanted to try Sinemet to try to control these symptoms and make my daily living a bit easier. I just seem to be progressing rapidly into an uncomfortable daily life, with more stiffness, more rigidity, more pain throughout my body. All of it has coincidentally occurred as I have upped my dosing of Sinemet.

While on the cruise in May I was taking roughly 1 tab of 25/100 3 times a day...8:30 am, 2:30 pm, and 8:30 pm and doing fine. (see my thread on my cruise review). When I got back I decided that I better start upping my dose to what he prescribed for me back in February, which was 2 1/2 tabs every 4 hours (5 times a day at 6am-10-2-6-10pm). I never got to the 5 times a day, but I did settle on 4 times a day, at 7am-12-5-10pm.

 

THE BOTTOM LINE ON THIS IS.....I should at least have an inkling of feeling better ON it than OFF it, shouldn't I? I simply don't see this "gold standard" benefit, but maybe if I was more advanced I would.

Edited by musicman

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Have you heard about the long duration/short duration relief from Sinemet? In the early stages of PD most people have a long duration benefit, that is, the timing is not critical, wearing off is not a concern under normal circumstances. It is only after a number of years (varies for each individual) that wearing off occurs on a regular basis so you have that dramatic predictable effect of the wearing off symptoms. That is what is described by fellow PD suffers when they

speak of the "miracle drug" Sinemet.

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I'm not sure I get your point? I know about the wearing off and all.

You seem to be saying that I really shouldn't be having any wearing off at THIS stage of my disease (stage 1 or less). My point is I SHOULD be having some ON time, shouldn't I?

I should take 1-1/2 tabs of 25/100 and feel SOMETHING, shouldn't I?

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Here's what I think . . . get the best MDS that you can find. A good one will  listen and if Sinemet doesn't seem to help your symptoms, they may recommend you stop or use a different combination of medicines. My husband is on an odd dosage (I've never heard of anyone else with a similar regimen). He takes one Sinemet (25/100) at night. Helps his legs keep from moving at nigh which keeps him awaket. He's been on more but never felt very good and had minimal impact on his symptoms (mostly tremor). He did not do well on Mirapex.  There is an old book with very detailed information on Sinemet dosing that some PD patients have told me was very helpful to them, the title is: The Parkinson's Disease Treatment book: Partnering with Your doctor to Get the Most from your Medications by Dr. Eric Ahlskog. It was published about 10 years ago so won't have the newer medications but others have felt the info, particularly on Sinemet, was top-notch. I haven't checked lately but haven't seen a new edition. 

 

One other thing to consider is perhaps when you are adding a new medicine or switching doses, you need to see your MDS more often. My husband's MDS has had him come back monthly for short periods to get the medications right. 

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Wow, we really are snowflakes!  I am at an early enough stage that I don't notice going "off" between doses and often forget and take my sinemet late.  I am on the 0830-2:30-8:30 regimen you described and I stay pretty much on an even keel.  I did not present with a tremor, and am all about rigidity.  which was dramatically relieved by sinemet.  so.  my gut reaction to your dilemma is with all the folks that tell you to talk to your MDS sooner than later and to wean down and even get completely off of it.  you can always start up again if need be.  my neurologist says that he started my sinemet with gusto because my symptoms were severe enough to affect my day to day life.  his philosophy was if I was diagnosed earlier and I could cope he would have held off.  my PD seems to be progressing despite the improvements so it is totally confusing.  sinemet has been miraculous for me but the insidious beast forges on.  it is not a cure.  for sure.    my point?  why take something that makes you feel worse now? there's plenty of time for that later!

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I want to thank musicman for starting this thread and others posting about their reaction, or lack thereof, to sinemet.  I really thought I must be the only one who didn't have any beneficial reaction.  Time after time I hear it referred to as the gold standard.  It is incredibly depressing when the gold standard fails to deliver.  In fact not much of anything "delivers".  Hubby wants me to see another doctor.  Truth be told I have lost all confidence in their ability to help me.  Although I feel terrible for those folks in similar circumstances, it helps knowing I'm not alone.  Thank you!

 

PS:

 

After my first attempt at taking sinemet, I have from time to time taken a pill when I'm having a bad day in hopes of feeling better.  I've always regretted it.  Nothing good ever came of it.  I could tolerate the side effects if just once I could see even a small improvement.   

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For those who do not response to Sinemet, (Levadopa/Carbidopa).  Parkinsonism is something to discuss with your MDS.

 

Parkinsons Action Network article:

 

What is a “Parkinsonism?”

Parkinsonism is the clinical definition of a variety of different underlying pathologies that can cause Parkinson’s-like symptoms such as slowing of movement, tremor, rigidity or stiffness, and balance problems. There are a number of disorders that can produce the symptoms referred to as Parkinsonisms; Parkinson’s disease is just one of them.

 

So, what’s the difference between being diagnosed with Parkinson’s disease and having what are known as Parkinsonisms? According to Dr. Dickson the typical Parkinson’s patient has Lewy bodies (aggregates of a protein called alpha-synuclein) in the brain’s neurons. When that patient is given dopamine replacement therapy (e.g., Sinemet), those symptoms go away.

 

By contrast, Parkinsonisms – also sometimes referred to as atypical Parkinson’s –have features in addition to typical Parkinson’s disease symptoms, and those symptoms do not respond to dopamine replacement therapy.

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MM,

 

Texas Tom might have a point. Your positive DaT Scan does not mean you have PD.  It just means you have a compromised dopamine system. Have you ever considered a second opinion?

 

Dave

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When my neurologist first put me on sinemet she had me take half a pill (25/100) pill daily the first week, one daily the second, 1 and a half daily the third – until I went to four pills per day during the eighth week.  The sinemet did absolutely nothing until I went to two and a half daily during  the fifth week.  Then my eating, showering, and dressing improved, along with my energy, but my writing, typing and walking were not helped.  It wasn't until I went to six pills daily that I saw dramatic results.  Then my writing and typing returned to normal, and my walking became normal about half the day.  She made further adjustments to my meds over the next year and a half, and I did better still.

 

It turned out that I had rather advanced PD when I was first diagnosed, and that's why I needed so much medication.

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