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Tamara

Isradipine trials and sinemet

11 posts in this topic

Good day for everybody! Happy to find this forum!

My name is Tamara and I am from Moscow, Russia.

I,m 50 years old and live with PD diagnosis since january 2012, first sings at jan 2010. I have aquinetic and rigid form , no tremors. I take now pramipexol 0,7 mg + amantadine 1 mg + akineton (holinolitic group) 0,5 mg + macuna pruriens 1 capsule 3 times a day. I,m steel working, drive a car manage my house and take care of my family - 2 sweet sons and hasbend. Rarely exercise now and 4 mounth ago i stoped azilect , since stop azilect feel myself much more better.

 

So that is my small story. Thank you for reading.

 

I have some questions and highly appreciate all answers

 

1. Is sinemet nowdays best levadopa-carbidopa drug?

2. Is it better to start take levadopa treatment with sinemet or leave it for a future ?

3. Most part of you as i understood from posts are using Sinemet from 6-12 mounth from diagnosis date. Here most of neurologists and PDP prefer to postpone levadopa treatment as long as possible, what is your opinion?

 

I have seen some of you use isradipine in trials - how do you do and do you feel any improvements?

 

Thank you for your support and attention

All the best and really sorry for my school English. Have a nice day

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you might be better off with sinemet, if you're not happy with what your're currently taking stop the mucana and add sinemet, you could start with 25/100mg/day and if there are no problems then try 200mg/day and if that isn't enough then 300mg/day.  i'm not a doctor and i assume you  have to have a doctor write you a RX and you'll start the sinemet (carbidopa/levodopa is what you'll be taking or benserazide/levodopa) under their supervision.  a great resource is THE NEW PARKINSON'S DISEASE TREATMENT BOOK by  J.ERIC AHKSKOG who has treated pd'ers at the mayo clinic for 30 years, he's a firm believer in starting with sinemet.   1st  edition is very useful too.  europe  uses different sizes than in the USA.

There is a new longer lasting C/L called RYTARY but it's very expensive and intended for more advanced patients. 

 

not sure why you are taking only .75mg pramipexole, usually that is too small a dose to be effective, 2-3grams is usually when it becomes effective. 

1mg of amantadine, did you mean 100mg?  what symptoms are you trying to treat with it?

 

sinemet is the brand name of carbidopa/levodopa and is made by MYLAN for merk.  i've tried it, it didn't work any better for me than the TEVA generic which unfortunately is no longer made by TEVA, they sold the rights to a company called MAYNE which also acquired the ACTAVIS C/L from TEVA and is only making the ACTAVIS generic from what i understand.  the merck product - sinemet - is much more expensive so get a generic and you might find one works better for you.

 

i have no info on isradipine nor know anyone taking it who has pd and high blood pressure.

 

  here's an article on sinemet phobia

What's Hot in PD? The End for Levodopa Phobia: New Study Shows Sinemet is a Safe Initial Therapy for Treatment of Parkinson’s Disease

What's Hot in PD? - July 2014

 

http://www.parkinson.org/find-help/blogs/whats-hot/july-2014

The newest study published in this month’s Lancet included newly diagnosed patients randomized to receive a dopamine agonist, a monoamine oxidase inhibitor (MAOBI) or levodopa. The primary outcome was the mobility dimension on the Parkinson’s disease questionnaire (PDQ-39) quality-of-life scale which is a validated way to measure meaningful improvements. There were 1620 patients randomized and followed. The three year follow-up revealed the PDQ-39 mobility scores were better in levodopa as compared to the other two groups. Follow-up at 7 years revealed levodopa was the best therapy, but there was a small difference favoring initial therapy with the MAOBI when this drug was compared to a dopamine agonist. The treatment related side effects were less in levodopa.

Over the past two decades the trendy phenomenon, referred to as levodopa phobia (intentionally avoiding prescriptions for levodopa) likely impeded the best clinical care for many Parkinson’s disease patients. An accompanying editorial to the recent Lancet article pointed out that levodopa phobia and also the favoring of agonist therapy was primarily driven by aggressive pharmaceutical marketing. The Lancet study revealed that all three therapies should be considered, but ultimately that the choice of drugs should be tailored to the individual patient. Patient-rated mobility in this study clearly favored initial levodopa therapy. 

What all this adds up to for patients and for Parkinson’s sufferers is that Sinemet and Madopar should be considered safe and effective as initial treatments for Parkinson’s disease. The doses and intervals should be frequently adjusted by an experienced neurologist/practitioner in order to maximize benefits, and to tailor to individual symptoms. Patients and families should keep in perspective that the “talk” about levodopa being toxic and accelerating disease progression (levodopa phobia) can prove a major distractor to good care practices. Precious minutes in the doctor-patient relationship should not be wasted on these claims, and prescribers should not avoid or under-dose this critical therapy, especially in patients with treatable symptoms. Critics of Sinemet and Madopar will need to bring forward much stronger human data if they wish to change clinical practice. In the mean time, we need to serve our patients by sharing with them the weight of the evidence which strongly supports that levodopa replacement therapy is not toxic, does not accelerate Parkinson’s disease, and can be used safely as initial therapy.

Edited by soccertese2010

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Hi, soccertese2010!

 

Thank you for replay. Im taking mirapex 0,7 three times a day = 2,1 mg

 

Mostly i feel myself good on this medication, the only thing which derrange me is my right leg walk bad when i am at home or well known space. It's a phenomena of my condition. When i,m outdoors or in unknown place - theater, store or restaurant i walk as healthy person!

 

Thank you for the book i try to read it

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whoops, missed the 3x a day in your message, sorry.

  if i had to choose between two drugs, everything else being equal, i would pick the one that let me exercise the best.  exercise may slow down progression and also benefits you in many other ways.   sinemet will likely be superior to  pramipexole since it binds to more dopamine receptors than do the agonists like pramipexole.   sinemet is worth trying.  mucana has l-dopa so your're already taking one of the chemicals in sinemet.   i'd stop the mucana if you try the sinemet.   a number of people posting on pd message boards praise mucana, the major drawback that i see is quality control.

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I have been on Sinemet since my diagnosis about 2 years ago and switched to Isradipine for my BP soon after. I have increased my Sinemet to 4.5 25/100's per day to manage tremor and stiffness. I am not sure if the Isradipine is helping, but I plan on staying on it until the trials are complete. If it doesn't show any benefit in the trial, I will probably stop taking it due to it causing leg edema.

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Tamara, Welcome to the forum

 

I have been in the Isradipine study trial for 1.5 years now. I started the trail when I was not taking any drugs after 6 months on the study drug I started to take Carbidopa/Levodopa also known as sinement. I started with 25/100 mg 3 times a day. We bumped it to 1.5 pills 3 times a day a few months later to get better coverage.

 

The latest research show that starting sinement or C/L early on or later does not make much of a difference. They believe that disease progression gets to a certain point and then the side effect known as dyskinesia starts. They looked at a number of patients. Those who started c/l at onset and those who waited a few years. Those who started at the beginning of onset had the same occurrence as those who started later.

 

The drug Isradipine will not do any thing to control the symptoms of PD. The hope and thought is it will slow down the progression. I can tell you that I have been in the study for 1.5 years and my progression has been very slow. I will know more over the next 1.5 years if it is doing any thing.

 

Hope this helps.

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SWVA, ADAM thank you very much for reply, every day brings us new hopes to find a treatment... Thank you also for taking part in trials- it is very importent thing for all patients. Isradipine was very promlsing...

 

Adam thank you for your post about levadopa, very usefull.

What diet do you use ? Something special for PD? Thank you

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Tamara, I try and keep a low processed foods diet. In the states we have an over abundant amount of highly processed foods. This often leaves the item with little to no nutrition. I have lots of salad, and chicken low meat fats, try to keep semi paleo in nature. I try to avoid wheat gluten as much as possible. I have found this helps with my energy and my joints hurt less.

 

There have been studies that suggest a mediterranean diet is helpful for those with PD.

 

Good luck

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The ketogenic diet has also shown some benefit for PD. I try to stay in ketosis, but it is really difficult to stay away from chocolate and ice cream for a long time.

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