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#1 Guest__*

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Posted 05 August 2008 - 09:40 AM

Doctors:

I have been taking stalevo for two years now,the first year stalevo 100,the second year stalevo 150. I also take mirapex-.5 mg at night for restless legs. Stalevo is taken at 6am-10am-2 pm-6pm. Without it I walk slowly and my right arm does not swing. An hour after I take it I walk pretty well. But the last couple of months has brought change. After it kicks in I start feeling stiff all over and feel like I want to move. If I am sitting still I get very jumpy and fidgity. You could call it restless legs only over my entire body. If I get up and move and maybe go to the health club,I dont notice it. When I get close to my off state,it goes away and I start walking slow again with no arm swing. So stalevo seems to make me walk better but at a price. Is this Dyskinesia or something else?
Thanks for the reply.

#2 Dr. Fernandez

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Posted 06 August 2008 - 04:51 PM

Yes, I do believe you are experiencing some dyskinesias.

Talk toyour doctor about adding some amantadine. It might relieve the problem.

Yours,
Hubert H. Fernandez

#3 BeachyBabe

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Posted 10 April 2010 - 01:46 PM

My husband has had Parkinson's for about 15 yrs. When in Gainsville he was put on Stalevo, which was easily taken. He has had dementia for about 8 yrs. and now he can't or won't swallow it. He is supposed to have 4 per day, sometimes he only takes 2. is there anything in a liquid form that he could take? Stalevo is a horrible pill to take for people with this problem. The orange color gets on everything. When he doesn't swallow it, it stays in his mouth and you can't get him to swallow it or spit it out. He also gets very angry with his caregiver and me. Help!
Thanks!

#4 Dr. Okun

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Posted 11 April 2010 - 11:28 PM

In the cases where swallowing is an issue you can talk to your doctors and consider a few solutions. First, you can switch from Stalevo to regular sinemet in a dissolvable form (parcopa), and possibly use injectable apomorphine as needed. When you get off of Stalevo you may need a slightly increased dose of sinemet and you may need to take it more frequently. It is best done under a doctor's supervision. The other option is crushing regular sinemet and placing in applesauce; but with this option it may be absorbed quicker and also wear off quicker.

Some people like to make liquid sinemet although most end up abandoning this approach. You take 10 sinemet tablets and grind them up and place them in one liter of Ginger Ale. Grind up and mix in one vitamin C tablet. 1 cc or 1ml roughly equals one mg of dopamine; and you figure out how much he needed to drink an hour to stay "on." It is labor intensive but sometimes works for the right patient.

Michael S. Okun, M.D.
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


#5 miracleseeker

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Posted 16 May 2011 - 02:36 PM

Hi Beachybabe,

My mother has the same problem with Stalevo. I know this was posted last year. Please let me know what solution you came up with. I am at a total loss. Stalevo works wonders for my mom but she won't swallow it whole which makes it not so effective. Her doctor switched her to Sinemet for about 3 months but it doesn't work as well. When will the makers of Stalevo come up with a smaller flatter pill? Parkinson patients cannot swallow and they come up with a horse pill????

#6 miracleseeker

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Posted 17 July 2011 - 08:59 AM

Dear Dr.

As stated in my last post, my mother is having a terrible time with Sinemet. She takes 2 25/100 at 5am 1 25/100 at 1:30 and 2 25/100 at 8:00pm Along with that she takes half of .75 mirapex morning and night and .50 in the afternoon. I've kept a log for the past 2 months on adjustments for these 2 meds but none seems to be doing her any good. She's sleepy all day long and barely talks anymore and if she does it's one word here and there or babbling. She sometimes sleeps with her eyes OPENED and if she' sitting upright her eyes are closed but she's not asleep. I heard of using provigil but we can't afford it since insurance won't pay. I heard of Botox on the eyes to keep her eyelids open but no doctors around us does that treatment.

She can't get up on her own from bed so she's peeing in her diaper and leaking constantly and does not let me know it's wet. She also does not have regular bowel movements anymore so I have to do it for her digitally. She pretty much has not gotten up from anywhere on her own since switching back to Sinemet from Stalevo. I can't take her out because of the uncertainty of when she will get a sleep attack and just drops.

I believe the only difference between Stalevo and Sinemet is the Comtan factor. However, Comtan looks exactly like Stalevo which is where the problem lies. The pill is too darn big to swallow. Just like beachybabe's husband, my mom has dementia so she's not making an effort to swallow it even if I cut it up in pieces. She will chew or let it dissolve in her mouth dispite the bitter taste and coloring. I notice a big improvement on the days she would swallow it whole and when it's chewed she's a mess. My brother suggested I take a contraption and slide it down her throat. Nice try but no. What else can we do? I feel the key to her "awakening" lies with Stalevo. Please help!

#7 Dr. Okun

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Posted 19 July 2011 - 08:29 AM

This is very complicated.

I suggest strongly a center of excellence evaluation and treatment recommendations in person. Also consider 1800 helpline from NPF.

There is a dissolvable form of sinemet called parcopa that is an option.

When we see sleepiness we get sleep studies and sometimes stop dopamine agonists.

Michael S. Okun, M.D.
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


#8 miracleseeker

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Posted 19 July 2011 - 01:44 PM

Hi Dr. Okun,

My mom was on Parcopa for 2 months earlier this year after Stalevo. It gave her terrible dry mouth/bad breath/cavities as a result of that. The artificial sweetener they put in to make it tasty also was not a good thing and losing what little hair she has after taking this was the final straw. She also wasn't any better on it. She also was chewing it instead of letting it melt in her mouth so just like all the other medications she was taking in too quickly. As for the Sinemet, I always think generic Sinemet is not as good as the real deal but it's been years since she was on the regular kind so the generic is all she has taken lately. She used to take Mirapex from 4.50 mg a day from years ago to now 1.25 mg a day and still the sleepiness has not decreased. Mirapex has generic but she still takes the regular version because that I know for a fact is far more superior for my mom. I was up all night last night thinking how she can still be on Stalevo and came up with a solution.

I called her doctor this morning and she said we will give this a try. What we will do is have her take 50mg Stalevo 3 times a day along with 1 25/100 Sinemet which will make it 150mg each dose. The 200 mg Entacapone in the 50 mg should make the difference in how she's dosed so far without the Stalevo. 50mg is the lowest dosage and also the smallest sized pill they make so that was a big factor in my consideration. Her doctor wanted to double the 50mg but that would also double the Entacapone which is too much which is why I came up with the 25/100 Sinemet.

The goal is to have her take pills that are small enough for her to not feel threatened yet at the same time she will reap the benefits of 150mg of Levodopa which was what she used to take but stopped due to the size of the 150mg Stalevo. As for the Mirapex we will have her take half of .75mg 3 times a day along with the Stalevo and Sinemet and hope for the best. The sleepiness could be from being in-between dosages of Sinemet in her system since it's not possible to give it to her more than 3 times a day at loser dosages each time. My mom attends a senior daycare center in the mornings and the place is too hectic for me to request someone to give her a dose while she's there. She basically has her eyes closed while she's seated there most of the time and repeats this when she gets home. I would say she's awake at most 4 hours a day and not at the same time. She's usually at her best 2 hours after taking the medication and also after a nap because they make her... sleepy. She's getting all sorts of weird side effects from the Sinemet and again it could be too much too soon and not spread out enough.


I have tried getting her off Mirapex before and she went into terrible withdrawals and always needed it to complement the Stalevo. Her doctor said the last result will be to have a peg tube inserted in her but I'm against it just so she could take Stalevo. My mother still has a great appetite and eats everything in sight. She's also very smart so hiding the pill in apple sauce or yogurt never worked. She always managed to eat everything in her mouth but the pill but will eventually chew it to pieces before swallowing.

I will keep you posted on how this combination works out. I just want my mom to be back to her usual smiling happy self again. Thanks for the sleep study suggestion but with my mom's dementia she will never cooperate. Thank you for listening.

#9 Dr. Okun

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Posted 20 July 2011 - 06:28 AM

Thank you for the update.

For what it is worth, the feeding tubes to help with meds and nutrition in our clinic have proven easy to put in and helped a lot of people. The general public stigma over a feeding tube may not be as pertinent to many patients with PD who can improve with them.

Michael S. Okun, M.D.
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


#10 miracleseeker

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Posted 20 July 2011 - 11:16 AM

Thanks Dr. Okun. I understand from the point of view of health professionals it is routine and does the job. However, from my perspective as a daughter it's terrifying to see a hole in her stomach and with her dementia she will have a field day messing around with the opening and causing all kinds of infections as a result.

#11 Dr. Okun

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Posted 21 July 2011 - 06:56 AM

I completely understand. I guess I just wanted to share it is usually not as bad as people think, and often very positive.

Michael S. Okun, M.D.
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


#12 miracleseeker

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Posted 21 July 2011 - 03:48 PM

Last night my mom took her first 50mg of Stalevo and started crunching it in her mouth just as I expected. 15 minutes later she fell into a deep sleep and peed in bed like she's been doing for the past year and leaked onto the liner she sleeps on. This morning I got her up at 5 and had her take another 50mg. It took a full glass of water and a container of apple sauce before she finally gulped it down. 30 minutes later she became very playful and actually raised both of her legs into the air while she was laying in bed as I asked her to get up for breakfast. She hasn't had this kind of flexibility in months. She's usually stiff as a board and whatever position I put her in is how she will be when I wake her.

I feel this is good progress and hopefully her mental state will improve as well where she can verbalize more of what she needs. As I mentioned earlier she doesn't have problem swallowing it's just that she always chews before doing so which lies the problem for Stalevo since it works better when swallowed whole. Would you believe she chews her water too? In a way it's good cause she's handed me a few fish bones from being aware of something in her mouth that she didn't want there.

I just don't understand the logic of WHY Stalevo need to be swallowed whole and what are the consequences of chewing it? Why would a medication be created as such for people who "can't" swallow it whole?

Thank you.

#13 Dr. Okun

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Posted 23 July 2011 - 08:42 AM

That formulation has comtan in it and that drug is not designed to be cut or chewed and could stain teeth. etc.

Some people use regular 25/100 sinemet and 1/2 the tablets and chew them.

I would also advise seeing your doctor and discussing her cognitive/thinking status and how much this is impacting her issues.

Good luck.

Michael S. Okun, M.D.
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


#14 miracleseeker

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Posted 23 July 2011 - 11:21 PM

If teeth staining is the only reason the medication needs to be swallowed whole then I can deal with that. In actuality though she is more mobile when she has swallowed the medicine whole rather than chewed. My mother was taking 5 25/100 generic sinemet which wasn't working which is why I had to switch her back to stalevo. Unfortunately she is still taking the generic sinemet along with the Stalevo so she's not as well as when she was taking 150mg of Stalevo which did not contain the generic formula. I've increased her Mirapex tonight by half a pill making it a total of 1.50mg a day hoping that might help her at least get up on her own. All of this because the 50mg is smaller pill but she's still not swallowing it which kind of defeats the whole purpose.

She also takes 20mg of Namenda and has been doing so since 2006. I really do not see any improvement in her mental state but her doctor insists she keeps taking it. I've tried taking her off it if one pill at a time but each time she gets more confused. I think she's more addicted to the medicine than the medicine is doing her good when she's off of it and not reacting well. She's tried Aricept and Exelon and both gave her jitters and nightmares.

Thanks a lot for your input. I really enjoy this website. I look forward to the quarterly reports and especially the Q&A sessions.

#15 Dr. Okun

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Posted 24 July 2011 - 09:41 AM

Thanks for the comments.

One thing you could try with generic sinemet is titrating up by 1/4 or 1/2 tablets until you get the desired response.

Michael S. Okun, M.D.
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


#16 miracleseeker

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Posted 24 July 2011 - 06:12 PM

I had my mom on 6 25/100 at most and she stopped talking for that week. I then decreased by 1/2 tablet and she didn't seem that much better so I kept it at 5 tablets but... still not at her best. Her neurologist is not a big fan of Sinemet. She thinks the more my mom take the more she will need in the future. She's still not talking much after I stopped the 6 tablets. I just think the generic Sinemet is not that effective. Her doctor prefers Mirapex even though I've told her that my mom is practically in a coma on a daily basis. I had requested for Adderall for the sleepiness but her doctor said no because it's basically an upper. I told her it is what it is and my mom needs something to wake her up so duh! Her insurance does not cover Provigil so that was not an option either.

Last night my mom was in a deep sleep from the extra .75mg of Mirapex and she was no help to me getting her up from bed to the bathroom at 2am. She went in her diaper and her liner like she does nightly. I don't know if it's worth keeping her on the extra .75mg or I should let her be consistent on half of .75 3 times a day. She's constantly sleeping with her tongue curled in her mouth and breathing through her mouth instead of her mose and sometimes makes snoring noises even though her eyes are opened which suggests to me she's asleep with her eyes opened. Is that possible?

I keep a journal of the dosages I give her but there's not stable pattern for her. She just has good days and bad days regardless of how much I give her for each medication so I can't tell. Dr. Okun, how close are we to cure this disease? I see a lot of research being done to prevent it but what about for people who already have it and are suffering? Every clinical trial that goes on and reaches approval from the FDA is still years away from being out in the market to just maintain the symptoms. I feel there will never be a cure so the pharmaceutical companies can stay in business. What are your thoughts? There are sides effects to every drug. You take one drug for one thing and need something else for the side effects and then the cycle repeats itself for every drug that you go on. Very frustrating.

#17 Dr. Okun

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Posted 24 July 2011 - 08:37 PM

Reading your post gets me a little worried you may need a second opinion.

First, if there is a significant communication/cognitive problem you need to be sure you are dealing with plain garden variety PD.

Second, those with cognitive trouble and sleepiness generally are not given dopamine agonists, but rather sinemet (the dose is titrated to the patient, and we are not at all fearful about giving too much).

A glazed look with open eyes is worrisome for seizures, medication issues, dementia, etc. It is rare but possible to be asleep with eyes open. She may need an EEG.

Someone needs to go over the med list and again I would recommend you consider a second opinion.

I know it is frustrating but care is getting better especially in centers of excellence and new symptomatic drugs and approaches can make a difference. The cure however remains elusive and hard to predict.

Hang in there.

Michael S. Okun, M.D.
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


#18 miracleseeker

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Posted 25 July 2011 - 04:16 PM

Yes she's had EEG test done and she doesn't have seizures. As mentioned in my earlier posts my mom does have dementia which is why she's taking Namenda. The dementia came out around the time her previous neurologist stopped her intake of Mirapex cold turkey because my mom told him that she thought she was on too much of it. I think to hear that from patient might as well be "stop or she'll OD and sue" So my mom took the last of her Mirapex and then 2 days later went into heavy withdrawals like she was a drug addict. Since this occured over a weekend we had to wait until the following Monday before we could see him or more importantly let him see her how she looked based on his orders. After that he prescribed Risperdal for her which made her worse and now we know it's a no-no drug for PD patients. When I called him about her irrational behavior he suggested we double her dose. Luckily I had an ounce of common sense and instead stopped it completely and haven't gone back to him since. The only good thing that came out of this was that I am on longer intimidated by doctors and will follow my gut instincts on how my mom's dosages of medications. I even told him off on the telephone which made me feel great! Of course I only have respect for doctors that impresses me and this is why I follow this website.

This morning my mom seems to be better. She got out of bed herself and seemed a little less sleepy and understands more of what I say to her. Baby steps....

#19 Dr. Okun

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Posted 27 July 2011 - 12:42 PM

Sounds like you are on the right track. Get her to another neurologist for another opinion!

Michael S. Okun, M.D.
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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