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Maximum dose of Sinemet


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#21 Dr. Okun

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Posted 31 March 2013 - 06:43 AM

You can ask your doc if maybe closer medication intervals and adding some regular release sinemet may help. Also ask your doc about a gastric emptying study to see if the stomach is emptying and the meds absorbing.

Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#22 Optomist

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Posted 07 April 2013 - 07:52 PM

Is there a pain management regimen that can be looked at..above meds at times donot work..no matter how many 25/100 you take and Lyrica?

#23 Dr. Okun

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Posted 07 April 2013 - 08:09 PM

I do not have a specific regimen, and I usually involve a pain medicine doctor.

Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#24 Optomist

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Posted 14 April 2013 - 11:00 PM

Thanks Dr. Okum for putting with these questions. You must be one helluva super human to respond to these postings and yet be able to perform your actual daily schedule. It is very much appreciated.
Yes we do have a university professor as a Neurologist and a Asst Prof. as pain management doctor. She is first on Lyrica (actually prescribed by the primary care 4 yrs ago). The pain management Dr. got her on Skelexin and Meloxicam both of which then taken off after 6 months, as there was no help and the pain when it happens at night (mostly) was happening with Lyrica, Skelexin, Meloxicam. She is back on Lyrica 100mg twice a day and she also takes 400 mg ibuprofen almost 3 times daily.

Do you believe she is taking too many Parkinson Medicine and it is the side effect of interaction or something else? With CR C/L 50/200, CL 25/100 , ropinrole 4 mg /3 times, Azilect, Amantadine twice, Lyrica 100 mg twice, Ibuprofen it is all getting mixed up pretty bad.. I dont know what is wrong here but none of our doctors are able to pin point or get her to stay away from the pain. Then as morning comes by she is all dressed up, driving and read to shop and she gets a smaller episode of pain and freezing during days, it is not at all as horrific as the episodes on some nights. Why so much pain on some nights, why nights?

#25 Dr. Okun

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Posted 17 April 2013 - 01:09 PM

Not sure about the pain at night, but some of my patients get this and take a few sinemet crushed and with orange juice at night and it works. Also apomorphine injections. I do not think you have too much PD med!

Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#26 Optomist

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Posted 12 May 2013 - 05:59 PM

Dr. Okum she keeps having really bad nights every 8-10 days. Some nights are actually pretty good (how and why) and she is mobile after some slowness but on some nights she is COMPLETELY IMMOBILE and freezes (now immobile and freezing are same thing?) , to a point where she cannot move her hands or head or leg and need assist with a very very small movement. Complains of back pain at times too. Got her X ray for back but nothing too bad except some degenerative changes. She is 48 now. Questions are:

1- Is this simply Parkinson related? Why are meds not working for almost 4-5 hrs despite being taken every 2 hrs. Rescue dosage, regular dosage, Lyrica, and all.

2- Could this be something else and what could it be? How to go about it. Back results were not too alarming. MRI not done due to movements at times. Once MRI was done under GA, 6-7 yrs ago with not much findings.

3- If this intense immobility in your experience only PD related? (but why few nights, why meds not working for these hrs). Mornings she is all around mostly with 25% of night issue or 10% at times. She is working at home, driving, shopping with little difficulty for 30mins minutes which gets better with rescue dosages but no where as bad as nights.

Thank you once again for your constant replies. I am amazed how you find time, but we are all glad that you can..its a God send gift for us.

Regards.

#27 Optomist

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Posted 12 May 2013 - 06:01 PM

Oh by the way we are not on COMTAN (generic) for couple of months..it was same with it and its same without it..costing us 500/onth

#28 Dr. Okun

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Posted 13 May 2013 - 07:12 AM

It is hard to tell based on the internet descriptions what it going on with the patient but a few things to keep in mind.

Adjusting dose and interval are important.

For dose failures consider a gastric emptying study to be sure absorbing ok.

Apomorphine, deep brain stimulation, and duodopa can sometimes be used to palliate severe dose failures (after proper screening and risk benefit analysis).

Could other disorders or issues be contributing....yes, definitely possible and best to keep all doc's communicating.

Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#29 Optomist

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Posted 19 October 2014 - 05:39 PM

Good Day Dr. Okum,

 

I am keeping up with your posts. What a forum you have going and cannot tell how much everyone appreciates it. Your indulgence is really God sent. Thank you.

 

Going back to my wife who is now 50 with 10 yrs of Parkinson now.  She is now weaned off  requip to one 4mg tab once a day and also one tab of Amantadine I guess 100 mg both she takes early AM between 4 to 7 AM. She has increased her 25/100 regular CL, lets say, as needed. Need your input as her mood and most prominently night time sleep is getting worse. She does lots of cleaning washing stuff daily which is really not needed. At times she goes without meds for 3-4 hrs and works very hard on something. As was the result of too much requip at one time, she believes I am having affair with 2-3 women at one time (No Fellas I am not taking any questions on how to become a macho man like me:)  ) but she has bad nights most of the nights and she wakes me up 6-10 times to turn her over, put or take off the comforters, take her to the restroom, help her dress, help her walk, help her get up, turn the AC up/down. She gets better sleep after 5-6 am till 10-am.

We see a Neurologist every 3 months and there is not much beside adding some meds or reducing the other, which I guess is what is there to be done but I am hoping you may add your expert thoughts:

So here it is:

One important thing: She does not have any tremors. She has extreme freezing episodes and rigidity, shoulder and back pain and has left knee arthritis due to crawling on knee. Ortho has  taken fluid out couple of time. Sometime we go out fine to a dinner but she cannot walk back to the car or we are not able to sit for long as she has to lay on the floor to get better.

 

Azilect 1 Mg: Morning anytime from 8am-11am

Amantadine 100mg + Ropinrole 4mg both only once a day: 4-6am

C/L 25/100 : 1 or 2 tablets as needed but within 3hrs of each other (I am not sure but total 10-12 tablets for sure)

C/L ER 50/200 : Stopped in between totally for few months as it does not work for her per her. (maybe we will be restarting per recent neuro visit,1 late night, 1 mid morning)

Advil: As need, 400 mg couple of times a day maybe

Lyrica: Now stopped (was not much help)

Lexapro 10 mg: 2pm-4pm

Clonezapam: 1 tablet (forgot the strength, probaly 1mg) at sleep time often around 11pm to 1Am.

Trazadone: 50mg 1 tablet at sleep time often around 11pm to 1am with Clonezapam

Vitamins D, B12, Co Q10 off and on.

 

I do ask her to take Clonezapam and Trazadone early like around 9pm but she does not listen. 

She has depression and my short coming is that I get very irritated if I have to get up 6-8 times in 4 hrs during night. We have frequent arguments and I fully understand atmosphere is not conducive for her symptoms. I try to make up every time she feels better but then she starts on some kind of accusation, or she will keep doing something very tiring and will not listen. Beside working on cleaning or washing or arranging re arranging her closet, her stuff she does not do any exercise. She is not required at all to do anything beside cooking couple of times a week and that too is not a requirement. I cook or we get food from outside. With her issues and grown kids at home and between my work, it is extremely difficult to keep sanity around which is again not good for her either neither it helps anyone around. 

DBS is not an option right now as she gets 7-8 hrs of on time in between and also I am not sure DBS is so great with no tremor Parkinson.

Night is the craziest part or when goes somewhere and if she is irritated or anxious. 

 

Thanks again for your insight. We are in Dallas, TX and we have been to Prof of Neurology specializing in Parkinson's at UTSW. For 8 yrs not impressed (took us to 24mg of requip at one time, Dr. Jankovic (visited him once for 2nd opinion at Baylor Houston)  brought it down to 8 and we are now at 4 with the new experience, not at UTSW, neurologist. They want us to go for DBS, we are not in agreement at this time.

What do we do, beside me being more understand at nights. At times she goes few days without much issues.



#30 Dr. Okun

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Posted 20 October 2014 - 06:07 AM

I would suggest you call our 18004PDINFO helpline and see if the nurses have any suggestions.  Also you may consider another trip to see Dr. Jankovic at the NPF Center of Excellence Houston.


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#31 Optomist

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Posted 12 April 2016 - 12:48 AM

Good Day Dr. Okun,

 

It has been almost 1.5 yrs. Many things have changed with her. Few things older to new (with past 6 months):

Her meds: Stopped Azilect and also Lyrica early 2015.

Gotten worse since.

 

Till mid march 2016, she was on 2 tabs of pure CL 25/100 generic (teva) 9 to 10 times/day. One 4 mg ropinrole, One 100 mg amantadine, one Lexapro 20 mg. Ativan 0.5 mg at night and 0.5 mg Ativan anytime during day or early am.

 

- Her Psychosis worsened. She also started calling emergency/police help once a month for various reasons like someone is house, need help if alone or just because. If she drives, she thinks someone is following her and after her to harm her. Her accusations of infidelity at me are almost twice daily. She thinks someone is in the room. See, hear things.

- She has been to hospital or taken to ER and hospitalized at least 5-6 times in last 12 months.

- She at times realizes her mistakes and then forgets and repeats.

- Her freezing and night time issues are getting worse.

- Her constipation/mobility and night time urine urgency is getting worse. Apathy and depression is at peak.

- She has lost 10-15 pounds since 2013. Does not like her thin body, depressed.

- She still travels, at time drives and at times is fine for half a day. She gets happy at times and remains OK for half a day. She dresses up, does her makeup, goes places with us but during all that episodes of freezing do occur and sometimes are severe. In between her FIXED delusion (me, people after her, affairs) are always there. She was prescribed seroquel many times in last 6 years but does not like the side effects and never took it. (hard on breathing, palpitation etc)

 

 

Last 3 weeks: 

 

After recent hospitalization and talked to sternly by the neurologist there that she is poisoning herself with such high dose of CL (total almost 500/2000+) and her psychosis is purely CL related. She has now magically reduced 25/100 CL to 1.5 tab every 3 hrs, almost half of what she was taking. Not much changed from freezing standpoint but still somewhat better overall. Her last hr with this was bad. Anyhow she has accepted this dosage much better then the higher dosage (HOW WAS THIS POSSIBLE, YOUR INPUT?)

- Went to a psychiatrist in last one month and he started on 40 mg Latuda. Stopped Lexapro and Ativan (though she still takes 0.5 mg Ativan, as when she got hospitalized the Dr there asked to continue Ativan for anxiety)

 

Starting Last week: (Good Stuff)

 

Her MDS stopped 25/100 CL completely and started her on Rytary capsules (61.5/245) total 8 capsules/day. 

Start the day at 6am with 2 Rytary capsules, then after 4 hrs 1 cap, then after 4 hrs 2, then after 4 hrs 1, then 2, then 1, then 2,..so she is on 2cap, 1 cap, 2 cap, 1 cap, 2 cap total 8 capsules. 

She has done very well for past 3 days with it and her 4th hour is fair also which is great. 1st day of Rytary she was very active also.

For her stomach mobility MDS asked her to drink warm prune juice 6oz immediately followed by a glass of water to regulate her stomach mobility. It seem to help greatly. Maybe absorption is better and Rytary delivery mechanism is better, not to mention it is not generic medicine.

 

In short her current regimen is:

 

 8 Rytary capules (61.5/245), one 4 mg Requip, one 100mg Amantadine. After sunset,  one  40 mg Latuda, 0.5 mg Ativan, 25 mg to 50 mg Trazodone. She was also asked to take 5 mg Melotonin at sunset. She has severely deficient on Vit D and takes a prescription of 50000 iu once a week for I guess 2 months. She takes CoQ10 and multi vitamins and now started Turmeric capsules and separate Vitamin E also.

 

Just want to invite your thoughts on this and should we expect this better phase to last. Her psychosis is better but her FIXED delusion about me , I think has a strong foothold but has no basis at all and is totally in her imagination.

Also her MDS has suggested to ask Psychiatrist to stop Ativan and probably prescribe Buspar or Remeron ?

 

Please add/advise further, after reading the previous 2013 post also. Will her delusion lessen after consistent Latuda dosage (she has taken it for 2 weeks now). Please DO NOTE SHE DOES NOT have tremors at all and does not show much dyskinesia also unless she is overwhelmed or talking to someone not so close or trying to impress someone that is when she gets little dyskinetic. Normally she does not. Should we look into discontinuing one requip and one amantadine that she takes? Is Rytary, in your opinion it is not too high a dose (was told dosage is not 1:1 with regular CL).

After 12 years of being a primary caretaker and after dealing with so many abnormal consequences, I am tired, fatigued, impacted financially, emotionally beyond one's imagination.

Again, thank you for your indulgence and God bless you for your time and your passion to help all of us out.



#32 Dr. Okun

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Posted 16 April 2016 - 09:57 AM

I think you are doing the right thing by working through the complex regimen with your doctors and your psychiatrist.  I think that it is trial and error to find the right cocktail that fits.  In general here are a few tips we find useful in our patients.  When hallucinations are an issue we often stop amantadine and agonists and go with levodopa only (Rytary is just a formulation of levodopa and should be titrated against symptoms).  When seroquel does not work we use clozapine and do the blood monitoring.  There is a new hallucination drug just FDA approved and should hopefully be available in later 2016 (NuPlazid) and that may be worth a try.  Sometimes as we age less Parkinson medication is better than more....it varies patient to patient and in many cases less medication more frequently works better.  Hope these tips help.  Also we have a free 18004PDINFO helpline.


Michael S. Okun, M.D.

Author of Amazon Kindle, Paperback and Audio of 10 Breakthrough Therapies for Parkinson's Disease
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips





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