How Do I Wean Myself Off of Sinemet?

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.

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:

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 have found a wonderful resource who has helped many people wean themselves from one medication or another. He is Randy Mentzer, a compounding pharmacist. Randy is not a doctor, but he explains that 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, Randy will jump up the potency and then reduce it more gradually.He works closely with doctors as he changes the potency of medications for patients. You cannot make these reductions by cutting pills down.

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. Randy also does phone consultations if you are unable to find someone locally. His e mail is: Randyrphconsulting@gmail.com

Robert Rodgers, Ph.D.
Road to Recovery from Parkinsons Disease
http://www.parkinsonsdisease.me

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14 thoughts on “How Do I Wean Myself Off of Sinemet?

  1. 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.

  2. 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

  3. 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

  4. 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?

  5. 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

  6. 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!

  7. 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

  8. 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.

  9. 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.

  10. 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)

  11. 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.

  12. 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).

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