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.

27 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,

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    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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  • 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.

  • What is NAC

  • 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.

  • Hello. I am sorry to hear of your illness. I will not consider the trials because there is no guarantee you will end up actually taking the medicine rather than a placebo.

    Have you been to a doctor or neurologist yet? Will he give you a prescription for the nelotibin? Read my post and then drop me a line thanks Dennis

  • MSashi

    I am taking the nilotinib brand name of Tasigna manufactured by Novartis. I have posted my very positive results on another thread in Health Unlocked.

    I chose the name Isthistheone for a specific reason. Yes, Tasigna is the one drug that research will show is going to stop Parkinson's Disease!

    I've been on Tasigna, 200 mg capsule once per day since June 1, 2017. Counting today that's 107 consecutive days. I am sleeping better, I can fall back to sleep after getting up to pee in the middle of the night. I went over 12 hours between doses on Day 104-105! Balance in the shower is much better, I don't have to hold onto the grab bar the whole time. Constipation is now history. My pill count has dropped from 18+/day to around 14. On day 104 it dropped to 10!!

    I'm confident my progress is the direct result of Tasigna. Will it reverse the course of chronic and progressive PD? Time will tell.

    I had to search far and wide to find a Dr to prescribe it. Medical monitoring is required pre and during Tasigna therapy. I haven't had any problems taking Tasigna, just a little hair loss.

    Thank you to the doctor who wrote my off label prescription, and to the doctors who agreed to follow me on this miraculous journey. You have literally given me my life back!

    Tasigna works!

  • what about motor symptoms?

  • When I'm ON, an occasional head bob is the only visible sign. As I start wearing off this movement is more evident. I never had any tremor in the seven years I've had PD. I am developing a tremor in my left hand, if I'm more than three hours between doses. Gait and balance have always been a problem since day one. This has led to a festinating gait that I feel is my major problem. Bradykinesia and stiffness of arms, legs and core not a problem until I wear off.

    Before Tasigna I was getting 2-2.5 hours max between doses. Yesterday I dosed at 4:48 PM and didn't dose again until 2:15 AM this morning - 9+ hours!. My first 12+ hours between doses was on Sep 13, Day 105. I am hopeful this will extend to include daytime hours.

    I am 66 years young and was DX in 2010. I think it's fair to say I've had this disease for 20-25 years. Don't try and rush results in 4 months. Give it time.

    Take care and keep moving.

  • I have started Tasigna 7 days ago, but I do not see any improvement, are you still convinced?

  • You do realize you have had this disease for over 20 years. Do you really think a week on Tasigna is going to change things? Give it a chance. Let us know in 4 months.

  • since Tasigna does not produce visible improvement in the meantime, I was wondering wheteher you can confirm positive results

  • I have not read about your progress with Tasigna recently : how are you getting on?

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