PARK2009:
1. I have not tried N. I would start a little low and work up to your daily dose (150mg) over three days, so my body is adjusted. I would eventually increase my dose, after maintaining the 150mg for at least 45 days. The studies available elude to a month before any results are noticeable (I am assuming your situation was different, you received benefits much sooner, correct?), so I would be expecting some noticeable change around the third week perhaps.
Once the effects of N are set into play, I would remain at 150mg until I started noticing a decline. Then I would consider increasing the dosage. Novartis produces: red capsule of 150mg, yellow capsule of 200mg, unknown to me colored capsules of 400mg. Increase by 50mg increments as required; meaning you will know when it is time to increase dosage. Since the material is known to remove Beta-Amyloid plaque besides other things, then I would think that once taken for 90 days (depending on what Stage of Parkinson) one could cycle this. Take every other day and observe during a week or four dosage at every other day, if there is a decline in effectiveness. The theory is once "cleaned-up", a maintenance dose would be taken...one 150mg dose every other day. This may keep the Beta-Amyloid cleaned out and those that are trying to start to be formed from forming their "Beta" structure, which is a bit complex.
Morning or Night? let's see what Novartis says, to wit: https://gisttrials.f...ail.php?drug=32
""Dosage: XXX mg orally twice daily, approximately 12 hours apart and should not be taken with food. The capsules should be swallowed whole with water. No food should be consumed for at least 2 hours before the dose is taken and no food should be consumed for at least one hour after. Dose adjustment may be required for hematologic and non-hematologic toxicities, and drug interactions.""
NOTE: This is for a 400mg dose, I removed the dosage above. If in fact a 150mg dose is "starter" dosage, it may need to be once a day after the three day work-in period: see aforementioned example. When the body is at rest (sleep) and preforming it's maintenance cycles, it may then be a good idea to take N at bedtime. The maintenance/repair cycling is between 1am and 5am assuming one goes to bed at 10pm. This is the DEEP SLEEP period, very important and should NOT be disturbed by waking due to baby crying, urination needs, etc. By using 1mg-3mg (depends on some factors) of Melatonin (hormone/ neurotransmitter) AND about 3 grams of Glycine (amino acid) at bed time will help induce DEEP SLEEP; not going to sleep, does not put you to sleep. The Melatonin and Glycine are available Online or at many stores. So there goes the $ again.
2. Previously, a few days ago, I asked about your diet; no answer. There are 11 types of dementia and Parkinson is one of those and in all cases the diet must be observed and modified to specifically address the cause of the effect; effect being dementia. Correct, one may not go off the handle and eat bad nutrition, regardless of how they feel. One cause of dementia is head injury and in that case diet is not a cause, obviously, although diet is still a major, not a minor, roll. I lost a sister to this type of dementia and this induced me to become a student of the subject matter.
3. Breathlessness. One of the consequences that may be observed taking N. Electrolyte imbalance will result in heart palpitation, light headed, maybe perspiration, lethargic, etc, but not likely shortness of breath.
In cardiology, the QT interval is a measure of the time between the start of the Q wave and the end of the T wave in the heart's electrical cycle. The QT interval represents electrical depolarization and re-polarization of the ventricles.
Let's see what Novartis has to say, and the [N] insert is mine for Nilotinib to wit:
""...fatigue and abdominal pain were more common with Tasigna [N] monotherapy cohort...""
""Patients with low blood potassium or magnesium should not use Tasigna [N]. These conditions must be corrected prior to Tasigna [N] administration and should be periodically monitored.""
""WARNING: QT PROLONGATION AND SUDDEN DEATHS
Tasigna prolongs the QT interval. Sudden deaths have been reported in patients receiving nilotinib. Tasigna should not be used in patients with hypokalemia, hypomagnesemia, or long QT syndrome. Hypokalemia or hypomagnesemia must be corrected prior to Tasigna administration and should be periodically monitored. Drugs known to prolong the QT interval and strong CYP3A4 inhibitors should be avoided. Patients should avoid food 2 hours before and 1 hour after taking dose. Use with caution in patients with hepatic impairment. ECGs should be obtained to monitor the QTc at baseline, seven days after initiation, and periodically thereafter, as well as following any dose adjustments.
Drugs known to prolong the QT interval should be avoided. These include:amiodarone, arsenic trioxide, chloroquine, chlorpromazine, clarithromycin, disopyramide, dofetilide, droperidol, erythromycin, haloperidol, ibutilide, methadone, moxifloxacin, pentamidene, pimozide, procainamide, quinidine and sotalol. For lists of other "possible" or "conditional" risk drugs, please see the Arizona CERT at www.azcert.org.
CAUTION: Patients that have had a major gastrectomy may have decreased absorption of nilotinib. See the link below. [ https://gisttrials.f...ail.php?drug=32 ]
See the prescribing information (link below) for complete details.""
[ https://gisttrials.f...ail.php?drug=32 ]
4. It sounds as though the N is working for you. Now if you can resolve the cause of your Parkinson and modify your diet accordingly you may eventually get out from under N and all other medications. As I mentioned in previous post, there are a few questions remaining to be answered before addressing the rest of how to resolve your situation.
Edited by LongLife, 28 April 2016 - 12:44 AM.