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Didi

Starting Sinemet -- how soon is it effective?

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When you started sinemet, how soon was it effective?

 

Titrating up very slowly-- started with 1/2 of 25/100 Carbidop/levodopa (3 times a day)  Now have titrated up to 1 tablet morning and evening, and still 1/2 tab at dinner. MDS has us titrating up to 1 tab of 25/100 three times a day, by day 16, which will be in 3 more days. I was hoping to see some results from the first time on 1 tablet. Disappointed.

So far no results at all. Not sure if it just takes time, if dosage isn't enough, or if it's just not going to be effective.

 

I was  under the impression that sometimes they do a levodopa challenge to diagnose PD, and that the results are more immediate. Is that with a higher dose?

 

MDS has us slowly titrating up to 1 tab three times a day. 

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Hi, Didi --

 

Like just about everything else related to PD, response to medications varies greatly, from almost immediately to never.  In my own case, I could see response to Mirapex or pramipexole within two days of starting on it.  When I added carbidopa/levodopa several years later, I could never detect a response.  However, it must have gradually taken effect, because I had had three falls prior to taking it and have had none since (about six or seven years).  Just one pwp's experience . . .

 

J

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When you started sinemet, how soon was it effective?

 

Titrating up very slowly-- started with 1/2 of 25/100 Carbidop/levodopa (3 times a day)  Now have titrated up to 1 tablet morning and evening, and still 1/2 tab at dinner. MDS has us titrating up to 1 tab of 25/100 three times a day, by day 16, which will be in 3 more days. I was hoping to see some results from the first time on 1 tablet. Disappointed.

So far no results at all. Not sure if it just takes time, if dosage isn't enough, or if it's just not going to be effective.

 

I was  under the impression that sometimes they do a levodopa challenge to diagnose PD, and that the results are more immediate. Is that with a higher dose?

 

MDS has us slowly titrating up to 1 tab three times a day. 

Hi Didi, When I took my first dose of carb/levodopa I felt like a rush of energy just rush into my body. I was an avid walker but I had to stop because my left foot would try to roll over.  When I took that first dose and felt the energy coming over me, I put on my walking shoes and went to the park and I walked 4 laps approx. 4 miles with no trouble.  The next day at work I was typing like my oldself again.  I was having tremors in my left hand all day before I started the carb/levodopa and was only typing with my right hand for the most part. The carb/levodopa had me typing with both hands and no tremor at all. 

 

My doctor had me on the meds you mentioned above and I never got any help  from them.  The doctor wanted to hold me off of carb/levopoda and try all the other options and none of them seemed to help me any. Still had left issues when walking and tremors in the left hand so bad I could only type with my right hand. That was frustrating to say the least.

 

So we went ahead with the carb/levodopa 25/100. I can't remember how many. And on my first dose I felt more energy flowing into my system and I went for the walk I mentioned above and went 4 laps with no trouble. 

 

I'm sure your doctor explained that protein can affect the absorption into your blood and getting to your brain.  In fact I feel any food in your stomach affect it. You don't want to take with food. On an empty stomach is best. That way it gets to lower intestine then dissolved into your blood and then goes to your brain and it turns into dopamine. If it is sitting in your stomach with a meal then it is just dissolving in your stomach and then it does you no good. 

 

Sometimes I feel it starting to work with 10 minutes on a empty stomach.

 

Sorry to get so wordy.  I hope the med starts working.  Has your dr. talked about Neupro patch yet? I tried it and it never helped me but it has helped others.

 

Good luck...Tony,,,

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He has been taking the carb/levodop 25/100 on an empty stomach. He's not noticing any results from it.

 

Maybe he will need a higher dose for any results. 

It's kind of scaring me that it isn't helping him -- if levodopa doesn't work for him, well ........... this will not be good .......

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I started the Sinemet very slowly - much like you.  I could see absolutely no improvement and many undesirable side affects.  In fact I got discouraged and stopped taking it.  After trying the Neupro patch and other meds with no improvement, my doctor encouraged me to give the Sinemet another go.  Starting off slowly again, I finally found some relief when I hit two tablets 25/100 three times a day.  Still not much relief from my tremors but otherwise better than before.  Zantac (nausea} was my constant friend and the restless leg thing was about 50%.  Lots of mood swings, fatigue, crying spells over nothing, sort of a drunk feeling one moment and rock bottom the next. 

 

Stayed with the Sinemet (two tablet 25/100 three times a day) for several months and then began taking Rytary three capsules, three times a day.  Much better, not perfect but no more ups and downs and some relief from the tremors.  Also started Gabapentin for the restless legs and while no immediate improvement I think I can notice some improvement over the long term.  I continue taking Benadryl (I was taking this even when on the Sinemet because it helps my tremors and helps me sleep) 25mg three times a day.  It is my understanding that some studies have shown some relationship between Benadryl and dementia.  I have mentioned this to my regular doctor, the neurologist, and the specialist at the Kansas Medical Center and none of them seemed concerned about it.  Nor did they recommend I discontinue.  I decided to do what I can today to feel better and worry about tomorrow, tomorrow.  Besides who knows, I may get hit by a truck and never have to think about it again?  Lastly, I use a little marijuana as I think it helps take the edge off of the tremors and eases some of the aches and pains.  I'm not recommending this, just letting you know my experience. 

 

Hope this helps.        

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He has been taking the carb/levodop 25/100 on an empty stomach. He's not noticing any results from it.

 

Maybe he will need a higher dose for any results. 

It's kind of scaring me that it isn't helping him -- if levodopa doesn't work for him, well ........... this will not be good .......

Hi Didi. My guess is you need to take more. My dr. is an MDS told me to take as much as I need to be normal.  There is no daily max he told me. This is a safe medicine with 50 years of experience. You cannot overdose on it or get addicted to it. It won't hurt your liver or kidneys. If you are not feeling any relief then you need more. But run It by your dr first. I'm not a dr. and don't know your medical history.  I'm taking 12 pills 25/250 a day. And nothing else. I've had Parkinson's since around 2012.. It works best on a empty stomach. If you take with food it will just dissolve in your stomach and do you no good. Protein will get in the way also in getting to your brain.  I eat small meals and small protein portions.  No more eating an whole steak. Good luck...

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Thank you so much to those of you who took the time to respond. I realize that everyone is different in how they respond to medication and I was hoping to get a survey of how soon and at what dose various patients respond to sinemet. I'm sure some on the forum have been on it for so long they might not remember how they responded in the beginning, or maybe many are not on it yet. But I really appreciate those of you who offered your experiences.

 

We are  now on 3 tablets of 25/100 three times a day: 6:30AM,  11:30PM,  and 4:30PM.  This is the 3rd day and really do not see much positive response. It is disappointing. In a few days I will contact MDS and see if they want to up the dose. If we don't get much of a response we will wean back off completely. Since it does not stop progression there will be no point in staying on it and risking the side effects and damage it can cause without any benefits.

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My initial experience with Sinemet (C/L) was disappointing, as my first neurologist refused to titrate the dosage enough for it to work. He preferred to prescribe a variety of agonists with troubling side effects. When I finally went to a MDS, he was more flexible about my C/L titration. While the first neuro only prescribed Extended Release C/L, the MDS went with Normal Release. My first "on" period occurred when I reached a dose of one and a half tablets of 25/100 normal release. This was 4 years after my diagnosis and 8 years after noticing symptoms.

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For me Sinemet was immediately effective.

Stump,

 

At what dosage was Sinemet immediately effective? I see you are now on 1.5 tabs of 25/100.  Was that the dosage at which it became effective or have you titrated up since then?

Thank you for our help.

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I started noticing significant benefit at half a tab. I get more benefit at 1.5, but got probably 70% relief at half a tab. And that was day 1. My only issue with Sinemet really has been an increase in daytime sleepiness. Cutting back to 1.0 tab in the afternoon helped with that. If I'm physically active and take it on a totally empty stomach I do get some nausea, but a cookie or similar gets rid of that in minutes.

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I started noticing significant benefit at half a tab. I get more benefit at 1.5, but got probably 70% relief at half a tab. And that was day 1. My only issue with Sinemet really has been an increase in daytime sleepiness. Cutting back to 1.0 tab in the afternoon helped with that. If I'm physically active and take it on a totally empty stomach I do get some nausea, but a cookie or similar gets rid of that in minutes.

Thanks Stump for your help.

That is sort of discouraging news for us as we don't see much of any benefit with 1 tab. I'm sending an email into the MDS office today.

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I just realized I explained the dosage wrong it is:   1 tablet of 25/200 three times a day.

Didi -  is it 25/100 or 25/250?   Does it make you wonder if your DH has PD?  It seems people on the forum who has it and takes c/l, the effect is a quick relief although it does not last long.

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It is 25/100.

Yes, the lack of respone does have make me wonder. He has some very typical features: the bradykinesia, cogwheel rigidity, shuffling gait, no arm swing, soft voice, facial masking

He also had a very positive DAT scan.

Dx Feb. 2014 by neurologist (immediately on seeing him)

Confirmed 6 months later by MDS.

He does have some atypical features: started very early with bilateral symptoms and his tremor is an action tremor not a resting tremor.

Because of the bilateral symptoms early on I wondered about one of the Parkinsons Plus Syndromes but he has none of the autonomic symptoms that go along with any of those.

I put a message in to the MDS. Waiting to hear what they have to say.

I was just hoping to hear from someone for whom 1 tablet of 25/100 was not enough, but had improvement on a higher dose. Because if C/L doesn't work for him, well that doesn't leave us much hope for any symptom relief.

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Didi

I'm sorry the meds aren't working yet for your husband. Try not to freak out yet, he may be having absorption issues or he may not be on a high enough dose to notice the improvement yet. My bradykinesia improved on day one with Sinemet, but I couldn't tell. At least I couldn't tell until I started playing with my Wii and proceeded to win a game I hadn't been able to beat in years (I'd been using my Wii to unscientificly track my motor decline)

For some Sinemet is miraculous and for others it takes time. Hang in there.

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Hi sorry to thread hop/bump but I guess I am in the same situation as your husband as I am wondering how long/much Ldopa it takes to feel/see an better improvement.

 

I started on Madopar (The other type of ldopa) just over 3 month ago 12.5/50 1 tablet 3 times a day for the first 6 weeks then increased to 25/10 1 tablet 3 times a day since then.

 

I noticed a pick up in energy and my walking improved (was dragging my toes on my right foot) when I increased the dose but the dystonia in my right hand was still fixed till 1 week ago was able to straighten my hand make a fist etc... which I wasn't able to do for the last 8 months but since I woke today my hand has gone back to square one which has me very disappointed.

 

Does this mean the Ldopa is working and a little increase in the meds will help me out further? As the Dystonia improvement for those 4/5 days was great.

 

Trev.

Edited by toontrev

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Trev,

I'm sorry you are dealing with similar issues - It is very disappointing. I hope you can get a med adjustment that will help you.

Here is the latest update for our situation. I emailed the MDS who responded in a couple of hours. I was told not to give up yet on C/L  working. He just may need a higher dose. We are to try titrating up very slowly by 1/2 tab at a time until by day 26 he will be on 2 tabs of C/L  25/100. He had some symptoms of anxiety the first time he tried C/L so they want him titrating extra slowly. So we will start trying that tomorrow and see how it goes.

I will update you on his progress Trev.  Can you call or email your MDS for advice? Mine is very good at working with us over the phone or email so that we don't always have to make a trip in.

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It is usually unwise to put too much stock in other people's experiences with the meds.  It's helpful in the sense of finding the range of experiences, but unless you are vastly outside of that range I wouldn't read anything into it.  And, so far, I don't think your husband is outside the range.  If he got up to 2 tabs 3 or 4 times per day and still had no improvement then I'd say you out of the range and should consider something other than Sinemet for his treatment.  

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Hi Didi. My guess is you need to take more. My dr. is an MDS told me to take as much as I need to be normal.  There is no daily max he told me. This is a safe medicine with 50 years of experience. You cannot overdose on it or get addicted to it. It won't hurt your liver or kidneys. If you are not feeling any relief then you need more. But run It by your dr first. I'm not a dr. and don't know your medical history.  I'm taking 12 pills 25/250 a day. And nothing else. I've had Parkinson's since around 2012.. It works best on a empty stomach. If you take with food it will just dissolve in your stomach and do you no good. Protein will get in the way also in getting to your brain.  I eat small meals and small protein portions.  No more eating an whole steak. Good luck...

You must be made of steel because 12 pills of 250 a day is a lot to me.  You are one lucky patient to do so well with it and have no side effects.  Good for you!

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Trev,

I'm sorry you are dealing with similar issues - It is very disappointing. I hope you can get a med adjustment that will help you.

Here is the latest update for our situation. I emailed the MDS who responded in a couple of hours. I was told not to give up yet on C/L  working. He just may need a higher dose. We are to try titrating up very slowly by 1/2 tab at a time until by day 26 he will be on 2 tabs of C/L  25/100. He had some symptoms of anxiety the first time he tried C/L so they want him titrating extra slowly. So we will start trying that tomorrow and see how it goes.

I will update you on his progress Trev.  Can you call or email your MDS for advice? Mine is very good at working with us over the phone or email so that we don't always have to make a trip in.

Hi Didi, I live in the UK so have to rely on the NHS for my neuro consultant so it's hard to get in contact with her as she is inundated with patients however I have access to a MDS Nurse that I can contact anytime with queries which is helpful she can also adjust my medication.

 

I do have an appointment on Tuesday 12th July with my Neurologist my first since being diagnosed 16 weeks ago so she will assess my response to the Ldopa i guess, all I was wondering is has anyone had a delayed response to the Ldopa? And it works spratically as I have had a response in my hand then it disappeared.

 

Hope your husband gets more relief with the higher dose.

 

Trev

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My improvement after my first sinemet tab was immediate, night/day difference. The response confirmed the Parkinson's diagnosis for me.

 

However, everyone is wired differently. I do know my first Neurologist mentioned little to no response to Sinemet can indicate another disease or anatypical parkinsons syndrome.

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