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PatriotM

Trying Sinemet

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I'm now over 4 years since diagnosis.  Exercise has been my primary medication for these past 4 years.  About a year ago, my tremors were significant enough that people frequently asked what was wrong with me.  The tremors made me look weak (sick), which is simply not acceptable to me.  I began taking medical marijuana about a year ago and was very satisfied with the result.  Not only did it improve the tremor, but it also virtually eliminated my frequent urination/urgency issue; lessened my fatigue; improved my sleep, and much more.  All this improvement without side effects.  Unfortunately, as time went on, I discovered several problems with using medical marijuana as the primary PD drug.  None of these problems were related to medical issues, but rather legal and other practical issues.  I discussed this in a recent post.

Therefore, at my last MDS appointment, I discussed these issues with my MDS.  He recommended trying Rimantadine.  It had plenty of side effects but no effect on my tremor.  He suggested trying Sinemet, which I am now doing.  I'm taking one 25/100 tablet 3 times a day.  One at 6:30 am.  One at 11am.  One at 4 pm.  I was hesitant to carry medical marijuana in my vehicle and therefore often didn't take my medication on a very good schedule.  With Sinemet, I can obviously keep Sinemet in my vehicle and therefore take my medication on a better schedule.  The only significant side effects I've noticed with the Sinemet are nausea and vivid dreams (including nightmares).  Sinemet does a surprisingly good job on my tremors, but doesn't do anything for my frequent urination/urgency issue.  I also am not sleeping quite as well with Sinemet as with the MM.

In summary, I believe that medical marijuana is the better drug.  However,  due to the legal and practical issues with marijuana, I am planning to reluctantly stick with Sinemet, at least for the foreseeable future.  

 

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PatriotM, welcome on board the sinemet users group.Did sinemet only help with tremor?it is supposed to help with rigidity and Bradykinesia.Did you see improvement right away?or you had  to titrate from half a tablet up to three.I believe MM has it's advantages and disadvantages,likewise all medications.I think the reason why medications are usually approved by FDA is if the advantages outweigh the disadvantages.What are your PD symptoms that MM helped you treat?

 

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Patriot,

i have the same issue as you do in regards to frequent urnation. My PCP put me on flomax about 6 months ago and li have to admit it has helped some of the situation. I have found that if I don't drink enough water, I still have to go but its droplets....

dave

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otolorin,

I titrated up from 1/2 tablet to 1 tablet 3 time a day.  I will probably titrate back down slightly.  The MDS wants me to take enough to control symptoms but no more than necessary.  The first dose in the morning seems to be most important to me and I am going to try going back to 1/2 tablet in afternoon and/or evening.  

I have been effectively treating bradykinesia and rigidity with exercise, so I don't really know if the Sinemet has helped with those.  The Sinemet is not working as well as MM for urinary urgency/frequency, fatigue, and sleep.

Dave,

I have taken  Flomax occasionally for kidney stones.  I may be forced to talk to the doctor about taking it on a routine basis.  I'm encouraged that it is working for you.

 

 

 

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Patriot,

The Flonase took a couple of weeks before it started helping. My biggest problem is that I don't always take my Rytary on time. When I'm off and have the urge to go, I can't. I just stand there trying to relax while I wait to go. Once I do go, it's start and stop, start and stop - very frustrating. You would think with this problem, I'd never be late with my meds but it still keeps happening.

Hope you figure it out.

Dave

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Dave,

My big problem now is that I'm up every 2 hours each night to urinate.  So far, I still feel like I'm sleeping enough, but with the MM I was sleeping through the night.  I'm considering taking one dose of MM at bedtime to see what that does for me.   Of course, that doesn't help me if traveling or in the hospital.  So, I may have to go to Flomax.  One more drug - just what I need!  :wacko:

 

Edited by PatriotM

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PatriotM would you mind sharing with us the details of your MMJ?

Diagnosed 2 years ago at 70yo started on sinimet 6 months after that. Started on 1 - 25/100 3 times a day and about 6 months ago moved up to 2 - 25/100 3 times a day. My dose times are 6:am, 12 noon and 6 pm. It's working well for me but life will never return to normal because of other symptoms not totally controlled by meds.

Thanks

 

 

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My opinon. As well as it may work for some people, using MMJ isn't replacing the lost dopamine, and only masking the symptions of PD. I'm not against its use at all but I consider it self medicating when the best medicine is being ignored or under utilized.

The goal is to bring our bodies back to a normal biological condition with the proper use of sinemet, not just mask the PD symptoms. Replace what our body is lacking. Tremors arent the only symptom of PD.

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Patriot,

That was the last problem that I recently solved. My last dose of Rytary is 9:00pm but I was waking up without fail between 1:30 and 2:00 to pee. I ended up adjusting my meds. I now take two Rytary at 9:00 and the final pill right before I go to bed which is usually around 11:00pm. Since that adjustment, I haven't had to get up in the middle of the night.  Maybe your Doc can prescribe Sinemet CR for bed or even try some Rytary. Just some suggestions...

Dave

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Pdmanaz, sinemet and MM treatments of PD are symptomatic.None of these cures PD.I supposed it is the side effects of these treatments that matters.I am on low dose sinemet,because of the fear of developing the most dreaded dyskinesia side effects.Some people on this forum developed dyskinesia after one year of using sinemet.I have only been using it for 5months,1 and 1/2 tablet per day.1tab at 11:00am and 1/2 tab at 4;00pm.And exercises have helped alot.Now the off periods symptoms of rigidity/bradikenisia are getting worse,compared to before I started using sinemet.I think good sleep actually helps to relieve the symtoms.As per MM,there is alotof  benefts yet to be discovered by the experts in medicine.Recently the CEO of Emblem pharmaceuticals,the company that makes oxycontin decided to research MM as a future replacement of oxycontin in treating chronic pain.Also there may be some studies ongoing for PD,on the benefits of MM.

 

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There is no cure for PD, I agree, but sinemet does replace dopamine, MM does not. No argument with you at all. I do think age has a big impact symptons. I have no symptoms of dyskenisia. When I do I will deal with it then.

I was regently evaluated at Ochners in new orleans and was told my symptons, although on meds, is level one.

Have a great day.

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Let"s all enjoy the medication honeymoon while it last.Whatever works in controlling symptoms with minimal side effects is welcome by me,as long as it is not debilitating.Enjoy your day everyone.

 

 

 

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I've been taking Sinemet for about 8 months. I can't recall what I got up to, but I had to lower it back because it was making my cognitive and behavioral problems worse. I have Dementia with Lewy bodies, so I can't afford to have what little I have left reduced sooner than otherwise. The dose I'm on now is sufficient to reduce the Parkinson stuff by about 50%, maybe a little more. The larger dose got rid of about 80%. I can live with this. Just a couple days ago, I ordered my first 30 ml bottle of MMJ, the kind without THC.I don't need my brain fogged up more than it already is, so no THC for me. I take MMJ to reduce anxiety, agitation, general buzzing throughout my body, other similar behavior stuff, and insomnia. I sure as hell hope it works as I have read in many places now. I wasn't going to get it, but it seems fairly clear that it has benefit to a high percentage of people of take it for things like Parkinson's and various dementias. I'm not entirely sure it is legal in my state, but I ordered from a business in my state. They make it themselves, grow it, advertise on the Web, and the people there give presentations about it. It is in plain view in a mid-size town, so the police apparently don't care. Even if it was clearly illegal, I think I would find a way to get some. On the Dementia Forum I read some, many of the folks there can't get by without it. My wife is a doctor, and she is supportive of the idea, mostly because she is on the receiving end of my agitation, anxiety, anger, jumpiness, and such. Good luck to all of us.

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Patriot:  When I first started c/l I also had nausea and vivid dreams-nightmares only, which I acted or yelled out.  A comedy or something fun seemed to be too much to ask for.  I no long have any nausea and my dreams are no longer all nightmares.   I now mainly just jerk, say if in my dream I'm throwing a punch, it is only a jerk of my arm instead of a full swing but mainly my acting out in dreams as been reduced to talking in my sleep.

Oh, I just remembered, I think it was lethe who posted something about sleeping on your back made for bad dreams.  I found this to be true.  If I sleep on my stomach the dreams contain less drama.

Edited by Peace

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PatriotM - Glad to see you trialing Sinemet.  While it may, or may not, work out long term for you I'm glad to see you giving it a go.

 

I haven't read all the responses, so apologies if this was already covered.  I didn't have bad nausea with C/L, but I would sometimes have mild nausea.  Based on my experience I recommend not taking it on a totally empty stomach if nausea is an issue.  Protein interferes with absorption, so you do have to be somewhat careful about what you eat from 1.5 hours before your dose to 1 hour after your dose, but carbs and fat are OK.  It's really hard to find anything with zero protein, but I've found that something that's at or under 2g protein with at least 25-30g of carbs and/or fat it doesn't interfere too noticeably.  Bread is surprisingly high in protein, so read nutrition labels.  

 

I will say that over time I have noticed my sensitivity to protein too close to med times has increased over the last 2 years.  Which I guess is fairly normal.  You may notice that protein doesn't seem to matter all that much right now, but after a year or two or three it will start to matter more.

 

Once I switched to Rytary my nausea issues went away.  I can take that stuff on a totally empty stomach, and even do a lot of strenuous or stressful activities without any problems (which on regular C/L would trigger nausea within 20-30 minutes of taking a dose).  My daytime sleepiness also was MUCH reduced on Rytary.  I think the main benefit there was that being an extended release formulation it cut down on the wild swings in blood levels of levodopa.

 

Can't tell you much about vivid dreams.  I very seldom remember dreams at all, good or bad, vivid or murky, and that has been the case pretty much since adolescence.  That said, my wife said I was sleeping a lot better than I had in the previous couple years once I started taking meds, and that I didn't tremor in my sleep anymore.

 

I have never had issues with urinary urgency.  My wife is always shocked at how much volume I pee in the morning, and can't understand how I can make it through the night.  :shrug:  I did sign up as a control subject for a research study my MDS was doing on urinary urgency, so I hope in some way that eventually helps you out.

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14 hours ago, stump said:

PatriotM - Glad to see you trialing Sinemet.  While it may, or may not, work out long term for you I'm glad to see you giving it a go.

 

I haven't read all the responses, so apologies if this was already covered.  I didn't have bad nausea with C/L, but I would sometimes have mild nausea.  Based on my experience I recommend not taking it on a totally empty stomach if nausea is an issue.  Protein interferes with absorption, so you do have to be somewhat careful about what you eat from 1.5 hours before your dose to 1 hour after your dose, but carbs and fat are OK.  It's really hard to find anything with zero protein, but I've found that something that's at or under 2g protein with at least 25-30g of carbs and/or fat it doesn't interfere too noticeably.  Bread is surprisingly high in protein, so read nutrition labels.  

 

I will say that over time I have noticed my sensitivity to protein too close to med times has increased over the last 2 years.  Which I guess is fairly normal.  You may notice that protein doesn't seem to matter all that much right now, but after a year or two or three it will start to matter more.

 

Once I switched to Rytary my nausea issues went away.  I can take that stuff on a totally empty stomach, and even do a lot of strenuous or stressful activities without any problems (which on regular C/L would trigger nausea within 20-30 minutes of taking a dose).  My daytime sleepiness also was MUCH reduced on Rytary.  I think the main benefit there was that being an extended release formulation it cut down on the wild swings in blood levels of levodopa.

 

Can't tell you much about vivid dreams.  I very seldom remember dreams at all, good or bad, vivid or murky, and that has been the case pretty much since adolescence.  That said, my wife said I was sleeping a lot better than I had in the previous couple years once I started taking meds, and that I didn't tremor in my sleep anymore.

 

I have never had issues with urinary urgency.  My wife is always shocked at how much volume I pee in the morning, and can't understand how I can make it through the night.  :shrug:  I did sign up as a control subject for a research study my MDS was doing on urinary urgency, so I hope in some way that eventually helps you out.

Yeah. I'm a camel in terms of water retention.  I usually have the reverse problem - trouble starting and stopping.  This has gotten worse with the PD.

I know vivid dreaming can be associated with marijuana use.  Marijuana supresses REM sleep when regularly used.  If you take a break, you'll experience REM Rebound (an increase of REM sleep), and therefore experience more vivid, memorable dreams.

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On ‎16‎/‎9‎/‎2017 at 1:37 AM, PatriotM said:

He suggested trying Sinemet, which I am now doing.  I'm taking one 25/100 tablet 3 times a day.  One at 6:30 am.  One at 11am.  One at 4 pm. 

The only significant side effects I've noticed with the Sinemet are nausea and vivid dreams (including nightmares).  Sinemet does a surprisingly good job on my tremors, but doesn't do anything for my frequent urination/urgency issue.  I also am not sleeping quite as well with Sinemet as with the MM.

In summary, I believe that medical marijuana is the better drug.  However,  due to the legal and practical issues with marijuana, I am planning to reluctantly stick with Sinemet, at least for the foreseeable future.  

 

Patriot, I'm glad you started Sinemet! It's been months since you started taking it, but I just saw your post and wanted to comment. The side effects you mentioned (nausea and vivid dreams) are only temporary. Your brain needs time to adjust. You may have titrated up the dose faster than you should have. You just need to take it slow, until you find the right dosage/frequency of dosing. It may take months until you get there but once you do everything gets easier.

Levodopa is the simplest and best drug for PD symptoms. It comes with its own limitations of course, but, still, it has an unsurpassed effectiveness on our symptoms and manageable side effects (aside from dyskinesia...).

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On 9/17/2017 at 7:21 PM, stump said:

Once I switched to Rytary my nausea issues went away.  I can take that stuff on a totally empty stomach, and even do a lot of strenuous or stressful activities without any problems (which on regular C/L would trigger nausea within 20-30 minutes of taking a dose).  My daytime sleepiness also was MUCH reduced on Rytary.  I think the main benefit there was that being an extended release formulation it cut down on the wild swings in blood levels of levodopa.

 

Bit of an update on this.  I now sometimes experience nausea with Rytary but only if I haven't eaten anything yet that day.  However it's not as bad as with regular C/L and if I can stand it for 20-30 minutes it goes away even if I don't eat anything. But a cookie or other carbolicious morsel will also knock it down in seconds.

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Just wondering why you started with Sinemet rather than Azilect? My neurologist says Azilect is the first drug I should try.  I, too, use exercise as my drug of choice.

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I think it depends on age when diagnosed. Most diagnosed YOPD seldom start with C/L from my understanding. I was diagnosed at 69 and was started on C/L. Never any mention of anything else.

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5 hours ago, hiker said:

Just wondering why you started with Sinemet rather than Azilect? My neurologist says Azilect is the first drug I should try.  I, too, use exercise as my drug of choice.

There's no "cut and dried" treatment for PD, but I think it wouldn't hurt to add it at the same time. I think it has slowed down MY progression, but can't prove it...

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A question about Sinemet. What exactly does C/L do for symptoms? I read a lot on here people taking a full regimen of meds but still have symptoms that dont seem to be helped by c/l. Is c/L just for tremors and muscle issues? I find it helps with my GI issues and generally just makes me feel more human

 I do have serious issues with fatigue that c/l doesn't seem to be helping much.

Thanks for your replys.

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C/L reduces my tremor, relaxes my muscles, eliminates my anxiety, keeps me from chocking on my saliva when I nap. Pretty much makes me feel better.

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