My husband, diagnosed 3 years ago was taking 1-1/2 pills 4 times a day. A few months ago, we noticed an increase in a thumb twitching movement. Other than that, he has no tremors and his hand is steady when he holds them out. It only shows up at rest and he can stop the twitching when he notices it.
Yesterday, he announced to me that he doesn’t want to take C/L anymore and he just stopped. The twitching is gone. It’s been over 24 hours and he seems fine. Lately he says he feels the same whether on meds or off... he says he feels fine. His complaint normally is body stiffness, jaw tightness and numbness in his hands, and slight difficulty articulating while speaking. Honestly, though, to look at him, you would not think he has PD.
My husband works out vigorously, 3 to 4 days a week, bikes, runs on the treadmill, and puts long hours doing yard work around the house.
Besides the C/L, he takes 3.5g of B1, NAC and probiotics to keep his gut healthy, besides daily vitamins.
Having said all the above, is it dangerous to just stop C/L? It’s been 36 hours now and he says for now he feels better now than he normally while on meds. I’m concerned he might crash later or have a psychotic episode (I don’t know that will happen, but just thinking of worst case scenario.)
I have him continuing with his B1, NAC and all his vitamins, as I think they’ve been helpful.
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1rocketman
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Most of the literature says do not stop this drug without talking to your doctor, which is probably good advice.
I am not a doctor so you should not pay any attention to me, and furthermore, this is not advice.
I'm responding to your question only to inform you about the half-life of carbidopa/levodopa which is only 60 to 90 minutes, so if he has already gone 36 hours without this drug, his blood serum level has fallen well below an effective level (and therefore, he might already be considered past the point of concern.)
I go on-and-off Sinemet all the time and never noticed a problem and like your husband, I feel the same whether I"m on or off the drug, but my experience may not be relevant to anyone else's case.
Thanks for your reply! It’s encouraging to hear that you also experience no side affects when you change your dose. I would love nothing more than for him to get off the medication, but we are contacting his neurologist just to keep him in the loop. Researching what can happen if he stops sounds scary!
Now listen up: I wouldn't want anyone to stop abruptly something unless you were really suffering and were sure of the problem and at the level of intolerability or belief of harm, and had been on it for only a short time...because you can have dependencies and hooks-in that react quite badly at that point, if you've been on it for a while. But if you suspect harm, and you haven't been on it for long enough to create a dependency, then you can downdose at a fairly aggressive clip to save serious suffering and harm...but, BUT, I would certainly do anything under a doctor's close consultation in case there are serious immediate side effects only the doctor is qualified to know what to do to augment the withdrawal safely. If you have to be assertive in order to obtain cooperation from a licensed pro, then just do so.
In all seriousness, it just depends on whether staying on it will damage you, versus the other side, it can be like being submerged in 100-200-300 feet of water and letting yourself suddenly surface, you can get the bends and disasterously hurt yourself, maybe permanently in several respects, if not kill yourself. But if you can tolerate the side effects and can back off slowly, I guess it would be ok but for sure please make close contact with a professional who can maintain with you on short notice for "titration" and for dealing with side effects secondary to the withdrawal. And it all depends on the side effects you encounter upon withdrawing at the pace you are choosing. You can always re-institute the drug and then approach withdrawal a little more gradually, and with a professional can add palliative substances, and this could conceivably give you time to educate, but there is no replacing dealing with a pro as your helpmate on a formal basis, hold nothing back and be completely honest and forthcoming with your info as well as your concerns. If you absolutely cannot get the immediate help of a licensed professional, which should be a rarity, return and back off slowly and keep notes, whatever reduces your suffering, and get that help and be insistent, pro's often will make if you make the case of emergency and even if you can't really pay them, appeal to their professionalism and they mostly will respond. I always did and never thought twice. Most clinicians are going to respond in similar. And no matter what, spend every free minute learning, learning, learning. Internet is really great for that, at a fast clip as well.
Pro's get paid well enough (even the paupers, because the professionalism over-rides all) that they will pitch such things in favor of the humanitarian/moral obligation if you remind them of it, because that's what being a pro is...the thing is, being a professional comes with automatic ethics and they know it and are ok with it, there is always time afterward for figuring out how to square things and they are pretty much prepared for that.
Also MBAnderson is correct and I would add what thoughts he's given you.
Thank you for your thorough response. At this point, I have him back on his meds until we can discuss this with his doctor. Our preference, of course, is to lower his dosage as much as possible, but we do want to be safe. I agree, educating yourself is key. We have found tons of great information, and we so appreciate that we are on this website; we’ve learned so much from other PWP who have walked that path before us. Thank you, again!
You are so right. Abruptly stopping Sinemet is extremely dangerous and can sometimes even lead to death. Look up Neuroleptic Malignant Syndrome or NMS. Sinemet can take up to a month or maybe more to wash out of the system. If he gets psychotic by then and uncooperative, you might be in more trouble. Take action now.
Thank you, I read about Neuroleptic Malignant Syndrome and it scared the hell out of me. He’s back on a lower dose of C/L until we can discuss it with his doctor. Our goal is to always keep him on as low a dose as possible. Fortunately, he didn’t show any of the frightening symptoms during those 36 hours that he might have experienced, but I do understand that it could have gone very badly. I appreciate everyone’s thoughts on this topic!
pd, I never thought of Sinemet is a neuroleptic. Are you sure? And, it seems like taking a month to wash out for drug with a half-life of 90 minutes would be too long? I'd like to know for sure, so do you have any references?
Hi MBA, good morning. Yes indeed, this is not well "advertised" in Parkinson's. I happen to know because I suffered from it when I abruptly stopped Mucuna Pruriens when my first MDS asked me to. Unfortunately, I was just getting diagnosed and in complete denial and refused to take the replacement drugs that he prescribed. I ended up in the hospital.
Here are some links and some details are behind a paywall.
My wife has PD she quite her medicine about 2 years and is taking a routine of supplements and is doing OK she also felt better without the Doctor's meds. I am not a doctor but you husband sounds like he is doing good keep up the exercise and what you are doing if he has a reaction don't panic PD can make a person change from day to day.
HealthUnlocked is about support. It is not a replacement for the relationship between people and their healthcare professionals.
I often feel like I am fighting two diseases… The Parkinson’s and the disease brought on by the medicine. I take up to three day breaks to fight the second disease, but after that I’m so stiff and slow that I have to go back to fighting the original disease again...
While I appreciate the support, to me, it's much more about what does and doesn't does work. I think people are pretty good when talking about pharmaceuticals, they convey their own experience.
I think if one can tolerate a little break, it does give a clearer picture of one’s true PD situation. and which aspects are due to the disease or the cure ...I realize that levels of responsibility and medical situation are different for everyone
My advice would be to ALWAYS, check with one’s Doctor/Specialist, before one decides to just go off medicine. There are many medicines, such as blood pressure meds. that can have side-effects, especially when one abruptly quits taking a medicine. I could go on and on, but, the bottom line is to stay safe, and take care of one’s self!
I have a prolonged effect from Sinemet - if I stop it I'm not only ok but better for about 48 hours, by 72 hours I am tremoring so badly I end up in the ER. And both times it took me a month to get back to "normal". Don't stop suddenly!!!
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