Any advice on reducing or stopping to take Sinemet?
Stopping Sinemet: Any advice on reducing or... - Cure Parkinson's
Stopping Sinemet
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senecaKS
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Is it because you're interested in exploring other more natural option? If so, this article may be of interest.
healthunlocked.com/api/redi...
A fascinating article! Thanks. The one thing I still don't get is, what is an appropriate dose?
It all depends - your current med dosage, Mucuna product l-dopa percentage (all vary), whether or not you're planning to combine l-dopa with carbidopa/benserazide, etc. It shows towards the end of the article the Mucuna l-dopa dosage could be as high as 4-5 times without decarboxylase inhibitors.
What's important is to avoid overdosing and start at a lower dosage and increase up slowly until you find what works.
The mucuna powder I use contains on average 3.5% l-dopa, so it is easy to calculate dosage. I make up a powder for my husband which is a mix of turmeric, mucuna and tribulus [1:2:3] parts. I then can calculate approximately how many mgs of l-dopa he will get as we try to limit his madopar levels.
May I ask why?
It will depend on how much you have progressed and you may only know that when you stop so definitely take care i.e. have someone around who knows what you are doing. Although sinimet just provides symptomatic relief that can be practically quite important e.g. when driving. If you are not sure of your knowledge than check with your doctor.
in reply to Kevin51
I find it very amusing but sad and puzzled by the lack of confidence that a substantial number of us on this forum have so little faith in our doctors who have trained 12 to 15 years for the privilege of treating us. It is a very sad commentary on the state of affairs in the Parkinson’s world.
Despe in reply to
Yes, BIG PHARMA has trained them too well! 
Bcarroll in reply to
They learned a bunch of crap from the drug companies and that’s all they know every single neurologist knows a bunch of big pharma garbage.
Germaney in reply to
It's more the fact that what they can offer usually brings side effects that can be distressing, not a personal attack on individuals who are doing their best.
I quit using sinemet because it made me too tired to function. The neuro changed to ropinerole and that seems to be working.
I am having success in decreasing my husbands antidepressants by limiting it to a few percent decrease per week. I have a jewellers scale that measures to mg and cut down the tablets and repack the bits into an empty gel cap. That way I can get it more accurate than just giving him say half a tablet which may vary depending where the cut went! I think by reducing slowly you allow your body to compensate slowly so it isn’t as brutal. Also I can judge how he is during the week and if he seems better or worse. If he doesn’t feel worse I reduce again the next week.
I’m not sure whether it would work with sinemet? If you are swapping to a different C/L product at the same level it might not be necessary but again phasing things in and out by increments seems more sensible to me than going cold turkey, or flooding your body of mega doses of something new. But then I’m not a neuro or medically trained! Just trained in the art of common sense!😊
(But check whether pills are allowed to be cut first as some how special coatings designed to dissolve in certain parts of gut and can’t be cut).
LAJ,
Is your husband still on Horny Goat Weed? I received mine today and he will start it tomorrow. Instructions indicate "Take one tablet between meals." Does the time of they day make a difference? Thank you!
Yes, he is still on it. He has continued to be energetic. I haven’t told him what it is , just that it is his vitamin so he has no preconceived ideas on what it should do! He hasn’t had any bad effect from it.
Today without prompting he folded all the washing, did the breakfast dishes and took the dog for a walk. For someone who wouldn’t get out of bed without being bullied this time last year it is great progress!
He takes one mid morning and another mid afternoon.
You can't imagine how happy I am when I read PwP are doing well!
Best wishes for continued improvements.
Looking forward to hearing if it does good things for you too! Good luck! As far as I know there is now 3 on this little trial! (Bassofspades too)
Thank you. I hope it works as well as it did for your husband. He took the first one today. . .we'll see. 
One a day, right? At least that is the instruction on the bottle.
He is taking 2 per day. Did you get the planetary herbal 600mgfull spectrum? I think you must have the 1200mg so once a day with that I’m guessing.
If you need it won’t you just feel awful? Either way I suggest reducing a little each day.
I stopped taking Sinemet after two years, and switched to Selegiline. My neurologist made that switch without even talking about doing it slowly. Whether that was good or bad, I don't know, but it worked for me.
Because drugs like Selegiline stop the natural breakdown of dopamine, of which we are short, we get to keep more of what we already have, rather than replacing it with levodopa, which the brain then turns into dopamine, but with serious possible side effects.
The only side effect I know of taking Selegiline is raised blood pressure, which hit me many years later.
At the same time as I started taking Selegiline, my late wife persuaded me to join her Walk for LIFE and I also made other changes to my lifestyle. I adopted a much more positive outlook and started to manage my STRESS levels. I went out of my way to avoid anything that caused me stress, including giving up my stressful job, In addition to all those things, I started doing serious Su Doku puzzles and started to learn French, all of which improved my mental health.
The biggest improvement in my condition came about when I learned how to consciously control many of my movements, especially including walking. Within four years of starting the fast walking, I was able to walk ten kilometres in under seventy minutes, which at the age of 64, was very good.
I hope this helps you!
Hi John!
My husband was taking Azilect, but it appeared to cause him confusion and swollen ankles. His MDS told him he can stop it although he didn't think it causes peripheral edema.
Side effects etc
Avoid drinking alcohol while you are taking selegiline.
While taking selegiline and for 14 days after you stop, you must NOT eat foods that are high in tyramine, including:
air dried meats, aged or fermented meats, sausage or salami (including cacciatore and mortadella), pickled herring;
any spoiled or improperly stored beef, poultry, fish, or liver;
beer from a tap, beer that has not been pasteurized;
aged cheeses (such as blue, Swiss, cheddar, Parmesan, or Romano cheese);
over-the-counter supplements or cough and cold medicines that contain tyramine;
sauerkraut, soy beans, soy sauce, tofu, fava beans; or
yeast extracts (such as Marmite).
Eating tyramine while you are using selegiline can raise your blood pressure to dangerous levels which could cause life-threatening side effects. You should become very familiar with the list of foods to avoid while you are using selegiline.
Selegiline may impair your thinking or reactions. Some people taking selegiline have fallen asleep during normal daytime activities such as working, talking, eating, or driving. You may fall asleep suddenly, even after feeling alert. Be careful if you drive or do anything that requires you to be alert.
Selegiline side effects
Common side effects may include:
dizziness;
nausea, stomach pain, constipation;
skin rash or other irritation;
sleep problems (insomnia); or
mouth sores or ulcers, pain with swallowing (while using selegiline orally disintegrating tablets).
This is not a complete list of side effects and others may occur. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.
What other drugs will affect selegiline?
Many drugs can interact with selegiline, and some drugs should not be used together. This includes prescription and over-the-counter medicines, vitamins, and herbal products. Not all possible interactions are listed in this medication guide. Tell your doctor about all medicines you use, and those you start or stop using during your treatment with selegiline. Give a list of all your medicines to any healthcare provider who treats you.
I was obviously fortunate. I had not been told any of those scary things and I continued to drink wine and I took certain vitamins and certainly did not have any problems as stated in your long list.
Perhaps explains your high BP while on it?
I'm quite sure it was the cause. My BP went up to 260/190.
Today I am going in to hospital to have an electric shock, to bring my pulse rate back down to normal. It has not been right for the past two years because of atrial fibrillation.
Be sure to get your potassium level checked and supplement with potassium citrate if it's in the lower range. Also, try Benfotiamine or Allithiamine forms of thiamine. - they're highly absorbable forms of thiamine. Drinking wine daily will deplete thiamine level and high pulse rate is one of thiamine deficiency symptom.
My husband David was on 21 sinment per day and 7 clonazepam, when they added PSP to his already Parknsons he decided to stop all medications. We started in November and very slowly started dropping meds very slowly, took 4 months until he was off all drugs. It really made no difference to his tremors and he is more aware of what was going on. Jimmy Patterson centre doctors no longer wanted to see him, if on no drugs then they feel there us no reason to moniter his progress. We have just continued enjoying life...its been 3 years drug free, tremors are worse, and life goes on..good luck, enjoy the time you have !
pdkid in reply to
hi! wondering at what increments you decreased the sinemet? were there any side effects? my dad was at 2.5 100/25 every 2.5 hours, then we replaced .5 with mucuna which allowed him to dose every 3 hours, and since then, we have been reducing by .5 sinemet every 7-10 days. he is now down to 1 tablet and seems to be ok. just wanted to cross reference! he's also on neuro patch but no other meds. glad you figured out how to stop all meds and are feeling better! thank you!
You need to explain why you wish to reduce the dose of. Sinemet?
I am very stable on a quite high dose, and see no reason to change , it is working so well. I had some side effects earlier, and changed to Madopar (Actually Prolopa, which is the Canadian version) As recommended by the local Movement disorder specialists, I started on a low dose and slowly increased it until I got a satisfactory response. I see no need for any supplements, and take none.
in reply to condor39
No dyskinesia on high dose?
condor39 in reply to
Yes, I developed some involuntary movement of my right leg. More annoying than serious, it stopped when I reduced the dose. My current dose of Prolopa 25/100 is two tablets, four times a day, which represents 800 of Levodopa a day. No side effects at this dose.
I believe that exercise would help, but I hate exercise, and am too lazy to push myself !
I have no special diet, I just eat foods I like, which includes bacon and eggs for breakfast, and lots of meat for lunch and dinner.
I was not suggesting that anyone else should do what I do. What I do promote, is to see an expert, then follow their advice ! If you are not going to follow their advice, don’t waste their time.and yours by going to see them.
Sinemet makes me too tired to function. The neuro changed to ropinirole and amantadine. Feeling much more normal since the change.
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