Has anyone tried to stop Sinemet (Carbidopa-Levodopa)? I'd be curious.

The following warning appears on the web:
-------------------------------------------
WARNING!
Do not stop taking Sinemet suddenly, as a serious group of side effects, known as neuroleptic malignant syndrome (NMS), may occur. Symptoms of NMS include:


•A high fever
•Stiff muscles
•Confusion
•Irregular pulse or blood pressure
•A fast heart rate (tachycardia)
•Sweating
•Irregular heart rhythms (arrhythmias)
-------------------------------------------

I stopped cold turkey 3 weeks ago and have had little negative reaction but absolutely no muscle stiffness. I can do little things now that were either impossible or very difficult: shaving, showering, driving, writing, getting out of a chair, typing, rolling over in bed.

Just wondering if others have had experiences they could share.

Jim

My patient/ friend stopped taking sinemet over approximately 12 months time. Using the method of making liquid version (dissolving the sinemet pill in water and adding ascorbic acid and shaking) Decreasing the amount taken ever so slightly every week. But, during this time, she was also taking fava bean supplements to replace the l-dopa that she was getting from sinemet. I think it would be VERY hard to quit taking l-dopa..it is what makes me functional. I am only 60 and still have life in me and things I'd like to do. There is alot to consider when you have a physically disabling condition and taking prescribed meds. We all have to make choices in Life...weighing pros and cons...personally, going natural was the only option I considered after reading and seeing the side effects of synthetic l-dopa . But, if I hadn't started my research before my condition became worse...I never could have started it afterward. Looking back, I had a very small window. God placed the right people in my path and right experiences to prepare me for what I needed to accomplish before the worsening symptoms hit. If the fava tincture that I depend on had not been started exactly when the first one was...it may never have been made. God has a perfect plan and perfect timing for all things.

Four years ago (five?) I was taking 32 mgs of requip daily. DK was becoming a problem and I quit overnight in favor of ldopa. The warnings about doing things like that had just began to appear and I was not aware of the risks but I sailed through with no problem.

Aunt Bean,

Below is the Oswald Chambers for June 25:

I hope this doesn't violate any rules...

Jim

That is a beautiful devotional ,,,I had one of his books several years ago that I read daily. It is true. If you have not suffered, you are not as much value to those who are suffering. And yes, I feel that for this purpose I am here and pray that my work shall be accomplished and will be a help to future generations. Blessings..........Aunt Bean

My friend Jan replaced Sinemet with an amino acid with Mucuna Pruriens combo; this was an extremely difficult but rewarding change once she got through crisis of change. She had no other choice at the time, given how badly Sinemet was going for her. After two years, she cycled back onto Sinemet because of cost of the amino/mucuna regime and had a very brief honeymoon with it, but then again, she didn't do very well on Sinemet for long, especially at the doses she seemed to need. Dyskinesa galore.

A few months into this, she added an amino acid-rich vegetable complex, the Neurogenic Extracts, and was able to reduce too much (for her) Sinemet to a single tablet of 10/100. That was a year ago. Since then, without support from the vegetable extracts, she's reduced from a high of 4.5 tablets / day and is now at 3 tablets. She seems to do better on the Merck brand, still taking the 10 / 100 formulation.

Any drug change takes lots of support. We found that the minimum timeframe a dose change to settle in is about 10 days an, from there, to allow about 3 weeks to a month or so for stabilization before the next reduction. Not to push until there's stabilization.

Now, she's looking like Amantadine is going to need to be eliminated from her regime. Here we go again.


Best wishes!
Trisha

Where did you get the extracts? I can't seem to find them on the internet anywhere...

We sourced these nutritional extracts with the help of Dr. John Grinstein. We cannot recommend them, however, unless money is no object. Also, supply can be a truly significant problem. More to say about them at another point. Grinstein's neurogenic extracts did show how nutrition can be managed to optimize the body. Through their use, Jan was able to dramatically decrease dependence on a drug that was messing her up and in the process she made a major commitment to finding a diet that enhances her well-being.

So, back to this thread, what we've found as a mainstay of reducing or stopping Sinemet: fresh, organic vegetable juices; the Ketogenic diet that clears the way for better brain; detoxing the liver, etc. through every way practical, like using chlorella or cleansing herbs; increasing amounts of exercise; asleep by 9 or 10 PM.

Some things that are making an obvious difference for Jan, who wishes for but does not respond to carbadopa/levadopa without bundles of side effects.

just curious, how much do they cost?

Trisha,

Thank you for your reply. Honestly I expected more responses but maybe not many people try to get off the Carbidopa-Levodopa. What follows is my experience as I stopped taking the Carbidopa-Levodopa, my Parkinson’s history before that and the wonderful and incredible changes in the last 30 days!

Let me first direct interested persons to read the warning at the beginning of this thread. Changes to medication need to be discussed with the doc before doing anything, especially terminating the principal medicine, Sinemet. Having stated this however, let me tell you my story.

My Story

I am a 57 yr.old caucasion male white collar worker in the restaurant business (remember Sambo’s?). My family owned an Atlantic Richfield gas station when I was 10 until age 16 and I pumped gas there frequently. I liked the smell of fuel and washing windows/checking oil (remember .28 cent gas and full service, S &H Green Stamps?). In 1990 I created a consulting company which gave me sufficient capital in 1995 to finance building a gas station of my own and several more were built or purchased in subsequent years.

I was diagnosed with Parkinson’s in 2001 after a ten-year search to discover what my problem was. What started as an aggravation in my pinky finger in 1990 was progressing, thankfully very slowly, into a major disability today where everything I do seemingly is in deference to the disease. At least it was a month ago.

I remember the doc at the UCLA Med Center who correctly diagnosed me and told me I could either start taking Sinemet or wait until things got worse, that many people believed that there was a five year effecteness period, after which the usefulness of the pills diminish. I asked him which choice would he make and he told me he would start the Sinemet now, that I was relatively young (45) and more discoveries of meds for Parkinson’s would surely be forthcoming. I decided to start the meds in 2001 and have always had Sinemet/Carbidopa-Levidopa up to a month ago. In the past 5 years I have tried different things but nothing seemed to make much difference or the side effects were too much.

From 2001 through 2008 the only meds I took was 10/100 Carb-Lev. I would simply begin my day by throwing 6 or 7 pills in my shirt pocket and off I would go. I had other Carb-Lev pills stashed in the car, in my briefcase or other convenient places, just in case just in case I forgot them. In 2009 I began to have frequent battles with little things like shaving, putting my shoes on and typing. I began considering DBS at my docs insistence and I was deemed to be a good candidate. Not wanting this operation I began searching for the miracle pill.

And so I began experimenting with other meds, in addition to Carbidopa-Levidopa. I had tried stopping the Carbidopa-Levidopa a few years prior to this with disastrous results after only a few days. So the doc suggested Artane. At first it was great but in a week it was back to my prior state. After struggling with this drug for months, I decided to slowly cut back. I was down to ½ pill once a day (with lots of withdrawal problems) when I read something on this site about Cogentin, for which I talked to the Doc and got it approved. I decided to immediately stop the Artane and begin the Cogentin.

I now have been Carbidopa-Levidopa free for a month! A month ago I was taking the Carbidopa-Levidopa 6/day, ¼ pill every 30 minutes (really, this was best for me) plus Artane and Azilect (I ran out of Azilect at the end of May and actually have not been taking since then). A month ago I was barely able to shave, drive, type. I had difficulty cutting food when we would go to a restaurant, walked like I had a rock in my shoe, etc., etc. Today and for the last 30 days I have had almost no shaking, NO “ON” and “OFF”, I take my pills at 8 am and 8 pm.

So I wonder, is it the Cogentin, flexeril, the Motrin, lack of Carbidopa-Levidopa, or???? I have been so blessed to have had these last 30 days. What a blessing-even if it changes tomorrow. There is so much more if anyone is interested.

Below are emails to and from my Neurologist:
========================
From:
Jim
Sent:
6/3/2013 7:30 AM PDT
Good Morning Doc,

I have been waiting for my refill of Azilect and have now been notified that there is no refill. Can you phone in to the Riverside pharmacy?

Also I have had a severe backache since I started the Prozac. Wonder if there is a connection...

Also I have been taking Flexeril, 1 10mg and 800mg Ibuprofrin 3 times daily. Since about the same time I have started these two meds I have had remarkable recovery of some abilities and without the regular dosage of Carb/Lev. Yesterday I had 1/3 of my normal dosage and I have yet in these three hours to take a Carb/Lev--and I am typing this message and shaved without help!

Can you please send to Riverside phar the Azilect refill and a FLexeril prescription?

Thanks,

Jim
==================================
From:
NEUROLOGIST DO
Received:
6/3/2013 11:43 AM PDT
Jim,

I've sent a new rx for Azilect. The flexeril, I just restarted the old rx Dr. xxx gave you. She wrote to try 1/2 tablet twice a day. Flexeril is not something to rely on from a day to day basis though. Also, there is a theoretical interaction between Flexeril, Prozac and Azilect. Please make sure you are not taking more than 1 mg of Azilect a day. Like I said, the risk is very very low, but if you notice fever, flushing, severe stiffness, confusion, then call 911 - it could be a sign of serotonin syndrome, which is an emergency.

As far as back pain and Prozac goes, I'm not sure if I can link the two together. If you're taking ibuprofen 800mg three times a day, please be sure to drink plenty of water as it can affect the kidneys negatively.

Neurologist
==========================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/5/2013 2:27 PM PDT
Hi Doc,

I have interesting news! Today at 2:00 (current time this was written) I have taken no Carb/Lev 10/100 and I am doing fine. In fact, I didn't take any yesterday either and did fine. I feel half normal! My pills are

1) Motrin 800mg 3 times daily
2) Flexeril 10mg 3 times daily
3) Prozac 1 time daily
4) Azilect 1 time daily (I am still waiting for pharmacy to send-have not had this for several weeks)
5) Cogentin 1mg 2 times daily

I started noticing a big difference when I hurt my back and started taking the Motrin and Flexeril on Monday. I did however continue taking the Carb Lev but at a lower total daily count. On Tuesday I stopped entirely and waiting to see when my body might begin to demand it. But it didn't so I took none. Today I also took no Carb/Lev. Am doing fine right now.

This morning I went to Kaiser and had an x-ray so the Doctor gave me a prescription for Vicadin because she saw Arthritis in the x-ray, and also Steroids (Methylpreonisolone).
SEE NEXT EMAIL-
=========================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/5/2013 2:39 PM PDT
Continued....

I take the steroid for 5 days-3 per day decreasing to 1 per day until gone. The vicodin is as needed for the pain.

Anyway I am planning to monitor my progress without the Carb/Lev as long as I can.

Questions
1) Do you see any problem with the above?
2) Should I change anything while doing the steroids?
3) Is it dangerous to stop the Carb/Lev cold turkey?

Thanks
Jim Guffey

==========================
To:
Jim
From:
NEUROLOGIST DO
Received:
6/5/2013 5:44 PM PDT
Jim,

It's usually not good to stop carbidopa/levodopa cold turkey so have some with you just in case. What you're describing is so interesting!

I have no reservation about what you're doing, as long as you're feeling ok. Again, this is very interesting.

Neurologist
=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/6/2013 12:19 PM PDT
Hi DOc,

Yes it is interesting! But I have had the experience of meds with much promise, working well for the first day, then a wearing off of the newness and finally back to square one. That notwithstanding here is an update.

The first day (Tuesday) was no Carb/Lev (actual last dosage was Monday evening at about 7 pm). Tuesday results were impressive: I could use my right hand to shave, type, button buttons, pull up my pants, etc. No hand shaking, trembling or tight muscles. Walking was normal and with arm swing. I could even hunch up my right shoulder which I couldn't do in your office!

Tuesday I went to the xxxxxx for the pain in my lower back. At about 11 am I was feeling a bit lethargic and thought about taking Carb/lev but decided to play it out. Within an hour the feeling lethargic was gone and the rest if the day and night was normal. On this day I added the steroids (out of necessity for my back) but just one tablet.
CONTINUED
=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/6/2013 12:25 PM PDT
Day 2 continued...

Again this day felt like I was normal, walking talking eating playing--all was normal. No meds were taken except the Cogen, prozac, flexeril, Motrin 800mg, and the steroid.

Day 3 (today)

It is now 12:23 pm and still no problems and no Carb/Lev.

Other than sleepiness I am doing fine. Thanks again for all your help.

Do you want me to continue these updates?
==========================
To:
Jim
From:
NEUROLOGIST DO
Received:
6/6/2013 2:43 PM PDT
Hi Mr. Guffey,

This is continues to be a very interesting turn of events. Keep me updated on how you're doing, but if you don't want to, you don't have to send daily emails.

Neurologist
===============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/9/2013 3:36 PM PDT
Hi Doc,

Well, here it is, Sunday and almost a week without Carb/Lev. None, zero. nada. My life for the past week has been better than I can remember. The tradeoff has been minor in respect to the physical improvements. I am very pleased with the results subject to apprehension that the benefits are only for a time.

I mentioned the MD I went to for my back pain gave me steroids which I have taken these last 4 days and they will end tonight when I take my last pill. Did they work? I'll say so! I got up yesterday morning and the same pain was there. The pain was excruciating when I transition from down into a seat and raising back up to my feet. Truly almost debilitating. Then a few hours later I stood up and the pain was fully gone. SO that is out of the way.

So I now want to find out what is replacing my Carb/Lev since I have had none these last seven days. I need your guidance.

PLEASE SEE RECOMMENDED ELIMINATION OF MEDS #2

=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/9/2013 3:40 PM PDT
CONTINUED

It would seem to me that the ibuprofen or flexerill would be next to go and, if not for the back problem I would never have introduced them coincidentally around the same time I began Cenogen (sp) and the Prozac.

What do you suggest?

Jim Guffey

=============================
6/10/2013
1) Motrin 800mg 3 times daily
2) Flexeril 10mg 2 times daily
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
=============================
To:
NEUROLOGIST DO
From:
Jim
Sent:
6/10/2013 11:30 AM PDT
Hi Doc,

Actually I have two:

1) Have you ever seen a patient like me who has stopped taking Car/Lev after 11 years and actually improved?

2) Is it possible within the next few days to have another appointment so you can verify my improvement?

Thanks,

Jim
=================================

From:
NEUROLOGIST DO
Received:
6/10/2013 11:56 AM PDT
Mr. Guffey,

Try cutting down (not stopping entirely) the Flexeril and see how you do.

Neurologist
================================
6/10/2013
Finished Steroids
Took only 1 Flexeril in the a.m.
=============================
1) Motrin 800mg 2 times daily
2) Flexeril 10mg 1 times in the evening
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
==============================
6/11/2103
1) Motrin 800mg 3 times daily
2) Flexeril 10mg 1 time at night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
Normal morning, shaved etc. fine.
Around 12:00 experiencing down time, hand a bit shakey, Heaviness of my body. I will see if it passes and if not, will take flex again.
Taking another Ibuprofen mid-day (I skipped it yesterday)
2:00 felt a heaviness, felt my heart beating while sitting-took a Ibuprofen
2:15 looking up Flexeril with Sinemet:
Evening took another round of all pills except Prozac
no problems in the night but didn’t sleep too well (five hours)
---------------------------------------
6/12/2103
1) Motrin 800mg 3 times daily
2) Flexeril 10mg 2 times, morning and night
3) Prozac 1 time daily
4) Cogentin 1mg 2 times daily
Up at 5:30 couldn’t sleep, overall felt good, and slight tremor in right hand; very slight


=======================

To:
NEUROLOGIST DO
From:
Jim
Sent:
6/5/2013 2:39 PM PDT
Continued....

I take the steroid for 5 days-3 per day decreasing to 1 per day until gone. The vicodin is as needed for the pain.

Anyway I am planning to monitor my progress without the Carb/Lev as long as I can.

Questions
1) Do you see any problem with the above?
2) Should I change anything while doing the steroids?
3) Is it dangerous to stop the Carb/Lev cold turkey?

Thanks
===========================================
Painkillers may decrease risk of Parkinson’s disease

By Geoff Michaels, News Fix, May 10th, 2013
People taking non-steroidal anti-inflammatory drugs like ibuprofen are less likely to develop Parkinson’s disease.

Previous research has suggested that non-steroidal anti-inflammatory agents (NSAIDs), such as ibuprofen, aspirin and indomethacin, could protect the brain from both Parkinson’s and Alzheimer’s disease. A new report from the long-running Health Professionals Follow-up Study and the Nurses’ Health Study now seems to back the claim for Parkinson’s disease.

Over 44,000 men and nearly 100,000 women were studied. None had Parkinson’s at the start but over the several years of the study, 415 new cases were reported. Regular use of non-aspirin NSAIDs was reported by 6.1 per cent of the men and 3.7 per cent of the women. These participants had a 45 per cent lower risk of developing Parkinson’s disease than those who were not regular users of non-aspirin NSAIDs. A smaller trend was noted for those using aspirin. It may be that NSAIDs protect the brain from degenerative disease through reducing inflammation.
============================
Flexerill vs. Cogentin

Abstract
1.
1. Nine different evaluation systems were used to assess the efficacy of cyclobenzaprine (Flexeril®) and benzotropine methanesulfonate (Cogentin®) in 24 men with Parkinson's disease.
2.
2. A randomized double-blind cross-over clinical trial was followed by an extension study, with patients permitted to choose either medication.
3.
3. Both medications were judged beneficial to a majority of patients. Of the 9 evaluation systems used, 8 revealed cyclobenzaprine was better, while the ninth indicated that neither drug affected cognition. Differences between the two medications were slight and not significant.
4.
4. In the extension study, 71% of patients selected cyclobenzaprine and 29% selected benzotropine methanesulfonate.
5.
5. The chemical structure of cyclobenzaprine differs from other anti-parkinsonian agents, and this drug may be effective for patients who do not tolerate or benefit appreciably from levodopa or other medicants.