I recently found out after 10 years I do NOT have PD. I am trying to get off Sinemet after being on it for 5 years and having a very hard time. I can’t find a single doctor with any experience in getting people OFF Sinemet. The doctor that diagnosed me as not having PD has been backed up by 4 other neurologists. While I have great respect for him I am very worried about NMS or DAWS. My question is How Do I Wean Myself Off of Sinemet?
Since he admits I am a bit of a novelty I am very concerned about his plan to get me off Sinemet in a week. I’ve been tapering very slowly due to debilitating muscle cramps that have torn muscles in my hip and knee. I am afraid this rapid detox while attractive might be fatal if I am living on the edge of DAWS as I suspect I have been for some time.
I would feel much better if I knew of a doctor with experience in weaning people off sinemet. Do you know of any such centers or doctors? I live in central California but can travel.
Thank you.
Laurie
Response to How Do I Wean Myself Off of Sinemet?
I can certainly emphasize with your need to wean yourself off of medication that you do not need. This process takes time and patience. In my research, I recommend a resource who has helped many people wean themselves from one medication or another. Doctors are not trained to help people with such challenges. This is precisely what compounding pharmacists are trained to do. I would thus suggest that you consult with a compounding pharmacist.
A compounding pharmacist will compound a medicine with – say – a 95% potency which you can take for a period of time. If there are no side effects, the potency will gradually be reduced over time – little by little – until you need take none of the medicine. this process may take as long as a year or two. If there are reactions to a reduced potency. Your pharmacist will increase the dosage, then reduce it more gradually. Compounding pharmacists work closely with doctors as they change the potency of medications for patients.
In summary, you cannot go cold turkey and you cannot get off of the medication within a week. It takes time and patience to wean yourself but it can be done. I suggest you find a compounding pharmacist in your local area and get a consultation.
Robert Rodgers, Ph.D.
Founder 2004
Parkinsons Recovery
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me
My husband has been on Carbidopa/Levadopa 25/100 three times a day for 3 to 4 years. His orthostatic blood pressure is impossible to control even with taking midodrine 10mg three times a day. He cut out one dose of the carbidopa/levadopa two weeks ago and has been doing fine. How long does he need to wait to cut out another dose or would it be safe to just stop the other two doses all together. I’m a nurse and realize that there is a chance of very bad side effects if stoped all at once.
Hi:
A question that addresses issues with medications can only be answered by a medical doctor. I am a doctor, but a research doctor (Phd) not an MD. Yes, you are certainly confronting a touchy situation given the circumstances. Were I your husband, I would be interested in discovering the cause of the symptoms rather than simply treating them. You and he might find my recent radio show interview with guest Dr. Ivy Faber to be of interest. The title of the show is: What is Wrong with Me?
Robert Rodgers PhD
Road to Recovery from Parkinsons Disease
Mynhusband was on rasagline and sinmet 25/100 twice a day he fractured his hip after operation had acute dilerium 8 weeks after still has dilerium nurse stopped rasagline in hospital said would cause dilerium but now after taking sinmet sleeps most of day more confused and and very unhappy. When he refused to take sinmet much better with confusion but had pain in knees and back help
I have had a spinal fusion and a Cervical Laminoplasty within tow months apart in 2013
I have severe muscle spams and in neck and shoulders. very heavy feeling legs and arms.
Pins ans needles feeling in arms and less neck is very tight (dystonia stiff).
I have been given different diagnosis. I have had the symptoms since my surgery.
The doctor told me to try sinemet and it seams to have made matters worse. more dystonia like feelings. Dose this sound like parkinson’s to anyone? would I do better off the Sinemet?
What would symptoms be if you went off levocardopa cold turkey?
Everyone’s experience is different, but for most people, the side effects of withdrawal can be serious –
even putting some people in the hospital! It is always a good idea to reduce the dose in close
consultation with your doctor little by little.
Robert Rodgers PhD
Road to Recovery from Parkinsons Disease
My father was diagnosed with Parkinson’s ten years ago. Until recently he was living alone, walking unassisted and caring for himself and his dogs. In November he fell and is now experiencing severe dementia. His doctor put him on nuplazid a month ago and now he is even worse. Could his sudden dementia be the result of his long term use of Sinemet? Just can’t understand how this severe dementia can occur overnight. Desperate to do something to help him!
Hi:
When it comes to the side effects of any medications, just do a search naming the medication and add the words side effects. You can investigate for
yourself whether the dementia might be due to medications he is currently taking.
Most people have the belief that dementia is a brain problem. Many researchers such as myself hold the belief it is a digestive issue. Bring his digestive system back on line, and people usually celebrate a reversal of brain fog and dementia. I recommend you listen to my radio show interview with Natural Pharmacist Ross Pelton who addresses this issue and the critical role of probiotics: http://www.blogtalkradio.com/parkinsons-recovery/2017/01/04/update-on-glutathione-for-parkinsons-disease
Robert Rodgers PhD
Road to Recovery from Parkinsons Disease
PD 4+yrs after bike accident during race, striking head with helmet on & severely denting passing car door. lost ability to walk over next two weeks. had “benign familial intension tremor” since age 66, now 83. walking with crane and getting stronger. determined to live up to an eldery friend’s motto “fit & fine at 109” he’s still going skiing well at 95yrs.
Okay… I have been on as much as eleven sinemet/day. I was diagnosed with PD nearly 15 years ago. Over the ladt year, I have reduced it to two a day! I feel more like ‘me’ again, but had to go back to three as I was expetiencing leg cramps, heated withdrawls… and nervousness. I believe I am on the right track, but refucing from 11-10 is minimal, while 3-2 was huge. I want to go to zero, as the drug has caused some dementia, dysphagia, etc… i do hurt more, but feel like ‘me’ again. Anyone have a comment? Oh, btw, I have simultaneously reduced my morphine by 75%. I have had seven laminectomies, and other old man diseases! Any comments welcome.
Hi, I have been on Sinamet for restless legs syndrome I was on ropinerole before but as the highest dose for my size was required for me to relax my legs at night I ended up with very bad nausea so was then put on Sinamet but yet again the highest dose was needed I have been on Sinamet for 6yrs now & have problems with my arms now also & a lot of bad side effects very bad bladder urgency, very itchy fry skin, my facial skin looks like Ive aged 15 yrs in 1 year, my scalp itches a lot, I am sometimes angry & tearfull, these & more side effects are very hard to handle & this adds a lot of stress to my life thus making it harder to control my rsl, these side effects have been prevalent & high for over 5-6 yrs now, I cannot find a doctor or specialist who understands or knows much about rsl to help me at all , they now think I am a psych nut & I find this very insulting as I looked & felt normal before, I never had these side effects before being put on Sinamet & worked full/time mostly but after being put on Simamet that all changed, I also cant stand wearing closed in shoes as if my feet get warm my whole body over heats & my legs go crazy restless so I wear jandals or sandals even in winter & now have chill blains as a result, I cannot travel very far even a half hr bus ride can be unbearable & I used to drive, so in short it is ruining my life, the g.ps have said to me to wean off it but after so many attempts I still cannot even get down to staying on 1 tablet less as they dont offer me anything else to control my rsl to wean onto, so I get very tired run down & stressed through the inability to stay stand or even lie still when I take less sinamet , basically I havnt had any help at all for the last 6yrs, I would love to get off the Sinamet & onto something else with less nasty side effects that is safe long tern as rsl doesnt get better it slowly is getting worse over time, can anyone with medical training & knowlwdge of this offer me any help that I could suggest to my G.P to help me get my dosage down or off onto something else this drug is NASTY & I am really worried about what it is doing to me & my health,—-Tracey (Lherbie196946@hotmail.com)
I am on 200/50 4 tabs per night & have been for 6yrs now
Diagnosed PD about 2 years ago. I was put on Sinemet, can’t remember the dose. The tremor worsened and toe curling is horrible. Cramping, burning and very hard to walk. I was increase (yellow tablet) to 2 pills 3xday. Drove me insane. Put back on one 3xday. Couldn’t handle it. So taking one 2x day and no relief at all. Toe curling worst and tremors are bad. Whatever dose take it doesn’t help. Anxiety, confusion. I does help with balance. Had knee replacement, not able to make appointment and have a call in to doctor. Help.
I had DBS surgery around a month ago. I’m going through the phase where the device is working well but my body absolutely will not tolerate carbidopa/levodopa; if I take even a 1/2, I have severe, painful dysikenisia. Even though I have tapered for 10 days, apparently my PD has not taken well to the “message” that no drugs are better than taking the very drug my brain likes. The device is “amp’ed up” every week/once a week, but it’s not enough as of yet to see me through the entire week tremor/symptom free. So I suffer over the weekends until Monday when I see the Neuro again…the Neuro said “You don’t need the meds as your device is working well, however, if you have “off” times (tremors) you can take a whole CB/LD pill…but it never works like that as it always makes me worse. Is there any thing I can use, take or do as an in between until the device is tuned in well enough that I’m tremor free for more than a few days at a time? (exercise is already on the list but I cannot over due as I’m still weak from recovery).
My husband has been on carb/levo 25-100 five times a day for awhile. He was diagnosed four years ago this month and they started him on it right away two times a day.
The first year, it helped symptoms but as each year passed and tremors got worse, it does nothing for him. He also takes Pramipexole two times a day. The problem for him is that he never has a time that he experiences the “onâ€time he is always in the “off†time. The only time he has no tremors is when he is in a deep sleep. At this point we are very discouraged and the side effects are worse then the PK. I want to slowly cut back on the carb/levo and get him down as low as we can to see how he does. We have had horrible luck as far as neurologist and I think it’s because they know there is really nothing they can do . But, I wish they would just give him some hope even if it is false.
So what I’m asking is this….is it ok to cut back slowly on the med and see how he does. He suffers so badly from balance dizziness, tremors, hallucinations. If there is a side effect, he gets it and the neurologist asked what I meant by that!!?!?. Thanks for listening.
Hi:
Some people react well to medications and others do not. Since I am not a medical doctor I am not qualified to offer suggestions on how you might want to proceed with your husband’s situation. I can report that I have interviewed a number of individuals on Parkinsons Recovery Radio who have succeeded in reducing medications. You might seek out the free radio show replays as a useful resource that will help guide a workable approach.
www.blogtalkradio.com/parkinsons-recovery
Robert Rodgers PhD
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me
I have been diagnosed with Parkinson’s at the age of 39. I’m now 51 years old and have been told that I don’t have it! I am on several meds along with Sinemet both 25/100 and 50/200, Amantadine, Artane, Neupro patch, and Baclofen. I am wanting desperately to get off these meds. I read about compound pharmacists and was very intrigued with the idea. Thanks for putting that out there as to now I feel like I have another option as the choices are so limited.
I have been diagnosed to have Parkinson symptoms and been out on 7 tablets 25/100 mg. A day of sinemet. I want to reduce the amt. how do I do it?
Very, Very slowly and gradually under the close supervision of your doctor. Compounding pharmacists can be very helpful members of your medical team in this regard as well.
Robert Rodgers PhD
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me
We are in the process of taking my husband off carb/levo now. His neurologist increased it to two pills four times a day and he could not handle it. He has been on it for five years and it did nothing for him, the side effects were awful. I asked about taking him off and she said let’s try. So, every three to four days we took away one pill. We are now down to four a day and in four days we will take one away. So far there are no negative reactions and I’m watching him closely. He has dementia and I’ve noticed a couple of times he thinks his mom and dad are still living and talks about calling them.
Really hoping for some positive outcome from this!
My sister has weaned herself off Sinemet over a 6 week period and has been much better in all ways. The only thing that has begun to happen very recently and not sure if it is related is that she has had a panic attack at a restaurant where she felt enclosed and needed to get away – that was 2 days ago and tonight she is feeling like she is unsettled sitting and and agitated as though she needs to move and get away. My sister has never had any tremors or classic symptoms off Parkinson’s, she had a hip operation that did not go well, had a cerebellum stroke 6 months later and then with no stroke treatment ( stroke was confirmed by MRI) was told the slight tremor on extended arm was Parkinson’s and put on Sinemet and then no follow up. She was on 2 Sinemet 3 times a day 25/100 tablets so 6 a day. No other Parkinson tablets just Sinemet and 45 lions later they made her symptoms worse…. face drops, right side of body drops, walk is like running forward unable to control it – dyskinesia leg giggling. Without it all the afore mentioned have stopped and she is like a person that has had a stroke on her right side re her walking – slow and right leg walk difficulty. Positively her brain fog is gone and her face and facial expressions and talking are normal. No difficulty speaking. All things have gone well bar this anxiety, agitated panic like feeling – has anyone experienced this or have any ideas ? My sister has been waiting for something to happen re coming off the Sinemet – could this just be psycho-sematic expecting something to happen or is it a real concern and a symptom of Sinemet withdrawal that she has to work through ??
any replies welcome especially those who have reduced or completely come off Sinemet. She is wanting to go on Mucuna as she has read that the Carbidopa contained in Sinemet is dangerous and Mucuna powder has L-Dopa in it on its own has help Parkinson people.
Real good information ,my daughter was prescribed Carbo/Levo and we having problems with speech ,leaning to side ,toes and finger curl,we know its the medicine and we are cutting back ,dosage is 25/100 twice aday the side affects are the problem how long ddoes it take to clear up?
Has anyone tried Lion’s Mane for Parkinson’s Disease or symptoms similar to that of Parkinson’s Disease? Many who have glyphosate toxicity and/or possibly non-metal chemical toxicity have symptoms consistent with Parkinson’s I am told. The jury is still out on the cause of my symptoms which are likely from chemical toxicity.
In response to Feb 7, 2019 comment by Caroline, I was recently told of this article on recovery from glyphosate poisoning: https://www.vitalitysystems.net/healing-from-glyphosate-toxicity. I have not read it but maybe helpful for you?