Early Stage Parkinson's and Nilotinib

Hi, I live in Hyderabad, India and have been diagnosed for Parkinson's in October 2014 and my symptoms started with tremors and gradually this has increased and I am also suffering from dystonia (rigidity and body pains). My neurologist has put me on Syndopa 110 mg (L-dopa). Started with half a tablet twice a day and now increased to one and a quarter twice a day. At present I am quite fit and walk about 2 kilometres a day and take care of my daily chores. But my symptoms are gradually increasing. I have come across the Nilotinib trials and am very curious about its efficacy. Nilotinib is manufactured in India and costs just a fraction of what it costs in the USA.

I am looking for others who are taking Nilotinib or thinking about taking it and would like to share their experience.

18 Replies

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  • Hi,

    I'm from Bangalore , diagnosed in 2010, managing with Kapikachu ( Indian mucana] from Vaidyaratnam Kerala, it should be taken in empty stomach, 1 TBS in normal drinking water with 1/2 fresh lemon juice, gives about 2.5 hrs ON time each time, has very less side effects. Syndopa induces dyknesia and dystonia.

    Regards

    Ramuu

  • Kapikachu, is that available outside Bangalore?

  • Yes , it is available online for Worldwide shipments, please Google Vidhyaratnam Kerala India. You can get link details in my other postings in HU. If you find it difficult, please let me, I will help,

  • Googled

    Mucuna pruriens is a tropical legume also known as Kapikachhu, velvet bean, cowitch, and cowhage.

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    keralaayurvedamedicine.com/...

    Aphrodisiac, also effective in parkinsonism and convulsions

    Mode of use: 8g of powder mixed with milk or suitable medha to be taken twice daily.

    100g INRupee 85.00 = $1.27

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  • Mucuna pruriens powder offers the full experience of tasting the herb and also provides the most economical option for purchasing it. A typical dose of the powder is ¼–½ teaspoon, once or twice daily, or as directed by your healthcare practitioner. Mucuna pruriens powder can be taken with water, milk, ghee, honey or another A substance that serves as a medium for taking herbs and other medicines; many anupans are valued for their ability to carry herbs and formulas deeper into specific tissues; common Ayurvedic anupans include water, ghee, honey, milk, and aloe vera juice or gel.anupan (carrier substance), which acts as a medium for delivering the herb to its intended destination and can enhance its effect.1

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  • Nilotinib is still under trial and now under feud between Mjf and Scientist, it is a Cancer drug !!, better to wait. I was also tempted, I plan to try NAC supplement, it has positive effect on PD.

  • I started NAC this week and feel better. I feel more normal and even sometimes don't realize iis time to take sineret

  • please tell me which brand you take

  • GNC

    600 MG 2 x a day

    This is on my own

  • Thank you so much

  • NAC is working for me

  • How much you're taking?? Which brand??

  • I am taking 600 mg once a day at night. I took it twice a day for a while which really jump started the improvement, but it made my mouth too dry. It mainly helps with mental clarity ( speech and numbers) and also removed the jittery feeling which is so unpleasant.

    Current brand is Metabolic Maintenance made in Oregon.

    Would like to hear if it helps you if you try it. Give it at least 6 weeks.

  • Thank you. I am planning to buy on ebay Now Foods 600mg x250 Veg Caps, hope this would work !!

  • Yes, NAC thins out the mucus including saliva so it makes the mouth more dry. I cut back due to that.

  • I was taking it anyway for chronic myeloid leukemia, and it has been nothing short of miraculous for folks with that disease. I'm in complete chemical remission and lived a 100% normal life -- until crummy old PD came along. Nilotinib did not prevent it and is not affecting it one iota.

    If you decide too give it a trial, it's important to get an EKG beforehand and thereafter about every three months. It can cause what they call prolonged QT syndrome which can be deadly! I would encourage you to talk it over with your doc.

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