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kgs914

any medication recommended between Sinemet and DBS

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I am 58, living with PD for 15+ years and basically on Sinemet the whole time.  Now, to make a long story short, Sinemet simply doesn't work anymore.  I see DBS as a last resort, but are there any other drugs either in combo with Sinemet or standalone (but not Stalevo or Comtan) that anyone could recommend I try ?  Thanks 

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There are a variety on meds you could try, and most would depend on your major symptoms. Here are some you could try. Now remember, with any PD med, you need to start at a low dose and increase slowly to a higher dose.

1- Dopamine Agonists: Mirapex, Requip, and Neupro patch. Out so all of these, I usually recommend the requip. The reason is that it seems to have less side eff sects than the other 2 meds in this class

2- Amantadine: this med works by increasing the amount of dopamine available for use in the brain.

3- Anticholinergics: Artane and Cogentin are examples of anticholinergics. They are used to restore the balance between dopamine and acetylcholine in the brain by decreasing the amount of acetylcholine and bringing the levels back to normal.

4- Eldepryl & Azilect: These are both helped to conserve the amount of dopamine available by preventing dopamine from being destroyed.

 

So, as you can see there are many other options available. DBS is an option, but if you have not exhausted all of the medicine options, I would hold off on the DBS until you have.

hope this helps and please keep me updated.

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I have not, but my Dr's have. I have had PD symptoms since I was 29, and I am now 46. I have worked long and hard to find the right "cocktail" of meds. As a pharmacist, j have had the access to some of the best Dr's in the world, and had access to some of the greatest minds in science. All of the who have suggested DBS, but agreed with me that if I can control my symptoms to such a degree that my PD is almost unnoticeable, why have DBS.

I will tell you that the past 17 years have been a ride. Some good, some bad, but i never gave up. I am a stubborn person that always believes that I can fix the issue. That attitude has allowed me to look at treating my PD and others in a different way. I look at the end result, increasing my quality of life.

So, as of now, DBS is not for me. But I do appreciate you asking. It is not to often I bring my own issues to the forum. But it feels good to share something about myself more than my bio.

Godspeed & STAY ALIVE!

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I am not so certain that holding off DBS until the L-dopa stops working is advisable, Mark.  I was told before undergoing DBS surgery that one of the more critical indicators they looked for before approving me for the procedure was my excellent responsiveness to Sinemet.

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It is based on the factor of: Your best day on sinemet will be what DBS will be like. What is not told to many patients, and I tried to stay away from this for many reasons, is that even though people do have DBS, many of them still have to take medication. So, my personal thought was, well if I have D S, and still have to take medication, I might as well just keep taking the medication I am on, since j have it down to such a micromanaged level, where, most people who see me don't even know I have PD. That was one of my one personal beliefs I left out because I did not want to discourage others from trying the procedure.

Hope that helps.

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Hi Mark,  In consultation with my neurologist, i will be starting Mirapex later this week.  What, in your opinion is the best way to take Mirapex in conjunction with Sinemet?  Currently, I take 2 50/200 CR's at approx these times.  3:00am, 7am, 2pm, 9pm, and 1 CR at 7:30pm.  (total of nine most days, sometimes more, occasionally less).     Do you think it is better to take Mirapex at the same times, or in between, or some other schedule . .  . ?  Thanks in advance,  Ken

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Mark -- just a quick THANK YOU for sharing your knowledge with us.  You make so much easier for all us trying to figure out the Rx maze of what is out there!

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Ken,

Let me ask you a couple of questions so I can give you my best answer.

1- How many times a day does he have you taking Mirapex?

2- Does the Dr have you on a titration dose to slowly increase the Mirapex?

3- Did the Dr mention anything about decreasing the sinemet at any time while you are on the Mirapex?

4- What is the primary reason for adding the Mirapex (what part of the PD is he specifically trying to improve)?

If you could get me these answers, I could get you a more specific answer and some possible other solutions.

For a quick answer, it is usually best to take it in between sinemet doses. This way you do not have an overload of dopamine. You will have a consistent level of dopamine in the system.

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Mark, I am SO GLAD you mentioned this: "it is usually best to take it (DA agonist) in between sinemet doses. This way you do not have an overload of dopamine. You will have a consistent level of dopamine in the system."

 

When I started Mirapex I thought I should kinda take it as a Sinenet "chaser". My doc said to just take all the meds at the same time. I got the feeling he thought I was micromanaging haha.... Anyhow, I would like to try what you mentioned. Don't mean to hijack this thread so will start my own when I get a chance. :)

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Mark, I am SO GLAD you mentioned this: "it is usually best to take it (DA agonist) in between sinemet doses. This way you do not have an overload of dopamine. You will have a consistent level of dopamine in the system."

 

When I started Mirapex I thought I should kinda take it as a Sinenet "chaser". My doc said to just take all the meds at the same time. I got the feeling he thought I was micromanaging haha.... Anyhow, I would like to try what you mentioned. Don't mean to hijack this thread so will start my own when I get a chance. :)

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Hi Mark, thanks for your response.  Hopefully, these answers will make sense:

1 - .125 mg mirapex three times a day (7am 1pm 7pm approx),

2 -  after 1 week, start taking 2 of the .125 mg mirapex at each of the times mentioned above (7am 1pm 7pm approx), basically double the dose from the first week

3 - not specially, but hopefully i will not want/need to take as much sinemet as i'm currently taking, anywhere from  7 -12 ,  

50/200 cr's, which i know is too much, and it's not working the way it used too.

4 - tremors and shaking, especially in my left lower leg.  i am trying to avoid DBS surgery.

My neuro also suggests taking it in between sinemet doses for the same reasons you suggest.

 

again, i appreciate your thoughts more than you can imagine.   Ken

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XAXA,

So glad I could be of assistance to you. Feel free to start a new thread, I am sure many people will then have a chance to see what you are talking about. Trust me, I have realized that if one person has a question on a particular subject, then there are about a 5 housing or more people with the same or similar questions.

Feel free, be that rebel, start you're own thread and watch it grow. What you may think is a small issue will turn into a mighty oak tree question when all is said and done.

Thanks for the info and I am looking forward to reading what you have to say.

All my best.

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Ken,

No problem, answers are always free. I was concerned with two things:

1- that the Dr was not titration you up on the Mirapex as should be done

2- that the Dr was not going to consider decreasing the dose of sinemet as the dose of Mirapex is increased.

It sounds like you have a wise Dr who is very knowledgeable about medication management of PD drugs. It sounds like you are in good hands, so please follow the directions they gave you and make sure you take the Mirapex in between the sinemet.

If you have any other questions, you know where to find me. Please promise me that you will keep me updated along the line, and if any questions come up, feel free to ask me.

Thanks again and I hope I was of some assistance to you.

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Ken,

Please do keep me updated. Many times I don't know the outcome of my advice because people forget to update me.

Sometimes the Dr goes in a different direction, and I can learn from that and possibly use it later.

So, thanks again

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 My mom takes 150mg Stalevo with half a .75mg Mirapex 3 times day.  She's always high as a kite after taking it and then drops about 6 hours afterwards.  I don't want to give her another Stalevo due to the entacapone.  I tried half a 25/100 Sinemet around 5pm and again she's high from it.   Now if I separate the Stalevo and Mirapex by say 4 hours?   She can take Stalevo at her usual time of 5:30 am and then take the half Mirapex at 10:00 am and then take her usual Stalevo again at 1:30 pm and the half Mirapex at 5pm.    Bedtime dose of Stalevo with  .75mg Mirapex should be ok since I want her to be sleeping more soundly and the drugs usually knock her out.  Sounds like a lot of planning and remembering but maybe worth a try?

 

 

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The way you suggested to give it to her is absolutely perfect. The way she is taking it is getting too much of the "feel good" receptors involved. The second way you mentioned seperates the medications enough to stop that. Too much dopamine, especially with mirapex, can spill over to the fee good receptors causing that high or manic feeling . So seperating them is definitely the way to go.

Keep me updated and I hope this helps.

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Sometimes I wonder if half a .75mg which is .37mg is actually doing anything?  As you know I have been trying to wean my mom off of Mirapex for years and now I finally got her down to 1.50mg total per day.  If it does work how long do you think .37mg  stays in the body?  Would 3 hours later after taking the .37mg be too soon to then take her usual dose of 150mg Stalevo but with .75mg Mirapex for the night?

 

 

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I think it is worth the try. Keep.a journal if you must until you get the routine down.

Keep me posted.

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It make take some planning, but I think this is the best way to go. If you need to keep a journal as a reminder for the first few days or weeks, feel free. This may help.grratly.

Best of luck and keep me posted.

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I tried it for 2 days and my mom was worse.  It seems she needs the strength of the combo drugs together at the same time.   I gave her Stalevo then 4 hours later I gave her Mirapex.  Half hour after the Mirapex was given she was very shaky and her eyes were blood shot and she could hardly open them.  I gave up.

 

I have tried half a 25/100 Sinemet at 5pm as a booster dose and she was very sleepy.  What else is there to try to tie her over for about 3 hours?   You know I crush Stalevo which people know it's not recommended but it works for my mom so.... what do you think of her taking half a Stalevo?   A whole one would be too much because of the entacapone but half a pill would be half the dosage.  I would like to try that to give her some pep before it's time for her evening dose.

 

 

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