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.

Jim, how wonderful for you! Hoooorahhhhh!

My long detailed replied just went down when my internet crashed, so here is the short/sweet:

It does take courage and a nuanced eye to interpret a need for less drug, when we're told repeatedly that as carba/dopa effectiveness becomes unreliable it's because we are impaired, we cannot receive its benefits. It is easy to think you need more when it's not working well. And easy to think that calls for piling on another drug to up effectiveness.

A little over three weeks ago, we got the hunch that Jan needed less because she was cognitively and physically more herself when in an off period. That proved right. Now we're working on when and how frequently to dose. It seems that she does better by starting as late in the day as possible, or did for a while. For a week, until she was bitten by a spider, that was noon. Today, 9 AM worked well.

There are so many layers and cross-currents that are not PD but contribute to it. Sounds like you are dealing with the nexus of stress/pain/inflammation very effectively.

Very best wishes, and keep us informed as you go!
Trisha

P.S. Soccertese, not everyone needs the same dosage of Neurogenic Extracts as did Jan, so I can't represent the costs fairly. She's at the point where insurance is going to have to cover most of what she does, and is making hard choices accordingly. Her money now is going to Neuro-Modulation Therapy, a treatment modality of Dr. Leslie Feinberg. This is working just great for her.

Happy 4th of July!

My story as of June 1, 2013 is this: I was taking SInemet/Carb/Lev 10/100 6 to 7 pills daily. I had tried several variations of this like adding Comtan, changing to Stalevo, etc. with little change. I had my annual appointment in late May with my Neuro and we decided to change from Artane to Cogentin. I had fully stopped the Artane without a substitute earlier in the year to try to identify why my symptoms were so pronounced compared to just a few years ago. My body wanted no part of quitting the Artane and I ended up taking it again in late March 2013.

I should state at this point my symptoms in order of importance:

1) Muscle tightness-this resulted in difficulty walking, eating, working; almost everything! I was reaching the point of going for DBS, for which I was approved for already. I literally did not want to leave the house for fear of what rebellion my body might present, or have a period of "OFF" time.
2) Apathy-I used to run several businesses I started without difficulty. Now I can't even open my mail. I have months of unopened mail in different piles of priority just waiting for my attention.
3) Unintended leg and arm movements-if I am watching a fight on TV I unconsciously "act out" what I see on TV. IF that's not bad enough my other arm and leg join in the fun. I end up sitting on my hand to stop it!
4) Morning Prep-Shaving and showering and towel dry are very difficult if I don't go immediately when I turn "ON".
5) Left side of body vs right side of body-My right side needs more help than my left side but once I turn "ON", one has too much and the other too little.

I went to my Neuro in May and he gave me my prescription for Cogentin so I stopped the Artane one day and started the Cogentin the next day.

Around this same time I woke up with a sore (very sore) back. I went to my Chiropractor but he was no help. So I started taking my historical mainstay of Flexerill and Motrin. I went to my family doctor and was given a steroid pill, identified earlier in this post.

It is now the 1st few days of June. I am taking the meds identified above when I notice I forgot my half hour SInemet/Carb/Lev dosage. But I also notice I feel...good! So it occurred to me to skip several pills, which I did. I was up the next morning and I felt great! Thus began a major shift in my meds: NO SInemet/Carb/Lev. I checked in with my Neuro and here we are some 30 days later! With no SInemet/Carb/Lev!

Here are the positives:

Absolutely no tight muscles
No problem driving
No ON/OFF time
No problem eating
No problem sleeping
95% of the time I walk normal type normal
90% of the time no shaking of the hand/foot

Here are the negatives:

Drowsiness
Slight memory loss (I don't forget facts, I just forget why I came to the kitchen
Possibly minor vision issues

So then, these are the facts. The last SInemet/Carb/Lev I took was on June 3, 2013. I FEEL GREAT! Every day I wonder if this will be the last day of freedom. I wonder if the relief is short-lived. But in my first days I was so happy to be liberated from muscle tightness, had it of ended there I would have been so thankful.

Anyway, here it is. Do with it as you will. But if it's as simple as adding Ibuprofen and Flexerill....

Consult your doctor. Always.

Jim

Hi Jim and soccertese

I am not joining this conversation to take a side, but I just want to make certain that what we post in these forums is done so with a sincere attitude of wanting to help someone struggling with Parkinson disease.

This has been repeated so many times that its sickening, but I will say it one more time - EVERYONE IS DIFFERENT as relates to PD symptoms. The only consistency I have found is this:

• People dx with PD have 2-3 of the cardinal symptoms of PD over a period of several weeks that cannot be attributable to anything else (those 4 cardinal symptoms are: resting tremor, Extreme rigidity, bradykinesia (extreme slowness), and postural difficulty (balance)
  
• No matter what side effects you may experience, dopamine replacement therapy gives some kind of relief of these symptoms
  
• Not everyone experiences side effects due to PD meds significant enough to affect quality of life (QOL)
  
• . Don't ever suggest that a specific therapy answers all problems. It doesn't, hasn't ever, and never will!

This forum is to provide support. It is "owned" by its users. Some of us have been posting here and migrated from BrainTalk over a decade ago. We tend to become defensive if it remotely appears that the forum members are being taken advantage of (especially with salespeople trying to push their product)

We are a team once our sincerity is established. By nature we will attack (sometimes even viciously) if we spot anyone appearing to prey upon our condition for the express purpose of profit.

Good luck on coming to consensus. And if you are a fake, I strongly advise you to pack up your bags (and product) and RUN! LOL
Peg

PS - arguing usually accomplishes nothing, and may run some needy people away. How about a BIG virtual hug?

Probably not the correct procedure!
July 2013. I am a resident of Canada living alone in Edmonton, Alberta, age 74. I was diagnosed with PD in 2001 and have mild familial ET since my teens. My Neuro sent me to see a specialist in Vancouver in 2010 as he was confused about my diagnosis mainly because Sinemet had no effect. He confirmed the diagnosis as tremor intensive PD and said I would need to start on Sinemet at some point. Started on Prolopa eighteen months ago, now on Sinemet (150mg x 3/day) which only during the past several months causes severe pounding tremor in my right arm one to two hours after ingestion, causing continual freezing making it very difficult to stand up from sitting position, change direction, dress myself. exercise, etc and lasts for seven or eight hours. I can go without the med for a day with a big improvement but any longer I start to weaken. In the past several months I have gone from self-reliance to dependence. I am striving to find a balance by cutting back to 1 x 50 mg twice daily. Sinemet is definitely no longer helping my condition. Any suggestions?

Starting yesterday I began having trouble with walking. I began having Freezing episodes where I wanted go but my feet refused to go. Unfortunately my body was already leaning forward and I nearly fell. Today it's worse. My voice is softer, my thinking somewhat foggy.

Anyway, my HMO just called to schedule an appointment for a brain scan but I have to stop taking my Cogentin 5 days prior to the scan. My neurologist says it's ok to stop.

Anyone care to venture a thought or experience?

Jim

Ok , trying a second time.

What if:

Your neurons are damaged not dead.
Sinemet was helping.
These are the signs of PD.

OR

What if:

Your neurons are fine.
Sinemet was giving you side effects that look like PD
You are having withdrawal symptoms.

Then either your brain is in starve mode or in crave mode.

Medicine does not know much about this.
Only those who have done what you are doing actually know.

So what is your gut instinct about it?
All your options are binary here, so it is your call.

Hi LindyLanka,

Thank you for this response. You have hit on the main question: What does my gut instinct say?

The simple answer? Well, I guess I don't mind going to jail and not passing "Go" forfeiting my $200. But I would rather see the "Bank error in my favor!"

My gut says go for it. I probably ....

Jim

As made it up says, these do sound like the cardinal signs of PD emerging, and you have had far longer than the normal time allocated for a 'wash out' of levodopa, so I have to say, take care and be careful of yourself, if it is a case of starve rather than crave, things could get worse.

Like all of us, assuming we all do have PD, we have no idea of what we really look like under the medication. I would hate for you to fall or hurt yourself otherwise.

Would also say, I do not know if you are a driver or not, but if you are, this might be a time in which you make a decision not to, to keep your self and others safe.

I would also take a look at the statistics on PD before and after l-dopa.

If you do not have PD these things are not relevant. If you do, they are. But really know one knows. Including at this point, you.

Hi Lindylanka,

You are right;
the doctor is right;
I am right;
Is there a right?

I am not sure but one thing I can tell you is that nobody seems to really know.

Thank you for this response and the consideration it shows. I really do appreciate it. But right now I want to see if there is a possibility that I may not have Parkinson's, not that that's necessarily better than having it. Maybe what I have is worse! Maybe what I have is better. Maybe what I've been through and what I'm going through can help others in some small way. But being only four days away from the test that may answer some questions I have decided to go for it. Again, I appreciate each person is taken the time to respond, including my doctor. But you asked what was in my gut: go for it!

Thursday night I had the last of my medication but had to make a decision: discontinue only the Parkinson medicine or all three. I have chosen all three on the basis that it makes very little sense to me to continue using a muscle relaxant and a painkiller by themselves. And so, Friday morning I had no medication nor will I have until Monday:
==========================================

JAMES E
MRN: (FON) 000
Schedule
8/16 - Stop Benztropine (COGENTIN)
8/19 - start Potassium Iodide (SSKI) 1 gram/mL Oral Soln. Sig: two drops three times a day for a total of 5 days, start two days before nuclear medicine study
8/21 - MOB3 Basement , Check in Radiology. Come well hydrated.
Injection @12pm, continue to hydrate for 3 hours. Use the restroom when needed.
Scan will be @3:30pm.
Thank you

James Lee, CNMT
Nuclear Medicine Supervisor
Kaiser SCPMG
=======================================

I will post daily anything of interest.

Friday, Day One
nothing out of the ordinary, slight tremor in right hand but nothing significant.

Saturday, Day Two
significant change today, tremor in right hand and arm definitely more pronounced with emotion.

That's it for now. Again, experiences, comments and advice are appreciated.

Jim