medication failure

I was diagnosed in 2006 I am new here. I have been experiencing medication failure or not working I am on carb/levodopa 25/ 100 5 times a day 7- 11-430-1000 at night . wake up because of pain .take 2 more to go back to sleep at 300am.i am disappointed with most doctors I have been to. even ones who ARE SUPPOSED TO be the best in their field most pain relievers are a waste of time. would welcome any suggestions. thank you doctor .willis sansum clinic you are one of the good guys.

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  • What the following studies show is by taking low dose niacin, 250 mg/day, it relieved inflammation as caused by the GPR109A receptor - the niacin receptor, in a PD patient. With niacin therapy:

    "Improvement in motor, cognitive, and sleep measures were observed following the intervention: The patients’ Unified Parkinson’s Disease Rating Scale (UPDRS) Motor Score (section 3) (24–19.5 points, −19% change), UPDRS bradykinesia (7.5–6.5, −13%), Trail Making Test Part A (47–35 sec, −25%), Part B (94–60 sec, −36%), PDQ8 quality of life questionnaire (20–10 points, −50%), PD Sleep Scale questionnaire (65–82 points, 27%), Rapid eye movement electroencephalography (REM EEG) night sleep (18–81 min, 350%), deep sleep (4–15 min, 275%), and overall sleep efficiency (27–71%, 161%). His walking speed (over 20 feet/6.1 m) before the niacin treatment was relatively normal (1.1 m/sec) and did not change appreciably after 45 days (1.2 m/sec)."

    Both of the following articles state, a known fact, that carbidopa depletes bodily niacin to make a worse PD prognosis. There are other supplements but this is a good place to start.

    Source information.

    ---------------------------------------------------------

    Low-dose niacin supplementation modulates GPR109A, niacin index and ameliorates Parkinson’s disease symptoms without side effects

    "A 65-year-old male, Parkinson’s disease patient, was evaluated for GPR109A expression, niacin index, UPDRS scale, handwriting test, and quality of sleep with and without niacin treatment. The evaluation was repeated 3 months after niacin was stopped. Niacin modulated the abovementioned parameters and showed the overall improvement without side effects."

    "A 65-year-old man with PD underwent 45 days of daily 250 mg niacin supplementation (qd)."

    ncbi.nlm.nih.gov/pmc/articl...

    Upregulation of GPR109A in Parkinson’s Disease

    "Niacin levels were lower in PD and were associated with increased frequency of experiencing body pain and decreased duration of deep sleep."

    journals.plos.org/plosone/a...

  • Silvestrov, you are always a wealth of information. Does one take this niacin with C/L?

  • Niacin should be taken with a meal. 250 mg should reduce the incidence of flushing but if flushimg occurs a antihystamine like quercetin are recommended. Quercetin can be taken with levodopa because it, like Entacapone, has COMT activity:

    Quercetin potentiates L-Dopa reversal of drug-induced catalepsy in rats: possible COMT/MAO inhibition.

    Abstract

    L-Dopa plus carbidopa treatment remains the first-line therapy in Parkinson's disease. The use of catechol-O-methyltransferase (COMT) and/or monoamine oxidase (MAO) inhibitors as an adjunct to L-dopa therapy has yielded varying degrees of success. Quercetin, a flavonoid present in many plants, is reported to inhibit COMT and MAO activities, the key enzymes involved in the metabolism of dopamine. In the present study we have studied the effect of quercetin on the L-dopa plus carbidopa combination against perphenazine and reserpine-induced catalepsy in rats. Neuroleptic-induced catalepsy is a widely accepted animal model for testing the drugs used in parkinsonism. Catalepsy in rats was induced by administration of perphenazine (5 mg/kg i.p.) or reserpine (2.5 mg/kg i.p.) + alpha-methyl-P-tyrosine (200 mg/kg i.p.). Catalepsy in animals was assessed by using the bar test. The quercetin dose (25-100 mg/kg, p.o.) dependently reversed perphenazine- as well as reserpine-induced catalepsy. When quercetin was combined with a subthreshold dose of L-dopa plus carbidopa, the anticatatonic effect was potentiated. Pretreatment with a central COMT inhibitor, 3,5-dinitrocatechol (OR-486) (10 mg/kg p.o.), or a MAO-B inhibitor, selegiline (5 mg/kg i.p.), also potentiated the actions of threshold dose of quercetin against perphenazine- or reserpine-induced catalepsy. On the other hand adenosine (100 mg/kg i.p.), which is known to decrease the release of catecholamines through an action on presynaptic A(1) receptors, partly reversed the protective effect of quercetin against perphenazine-induced catalepsy. Quercetin through its COMT and MAO enzyme-inhibiting properties might potentiate the anticatatonic effect of L-dopa plus carbidopa treatment. The results of the present study strongly suggest that quercetin could serve as an effective adjunct to L-dopa therapy in Parkinson's disease.

    ncbi.nlm.nih.gov/pubmed/127...

    The next article states quercetin reduces inflammation by reducing histamines from mast cells (white blood cells) in contact dermatitis:

    journals.plos.org/plosone/a...

    Sorry for the long response. ..cutting and pasting will do that...oh well I have to get ready for work.

    PS. Either quercetin with bromelain or isoquercetin works best.

  • Appreciate the response.

  • Silvestrov Short version of twice disappeared post. Niacin exactly same as B6?

    My multivitamion provides 42mg B6, your quote says250 mg? Dyskinesia all day today. Dx 2009, 4 x S+,azilect 1mg and 8 mg neurpatch

  • Niacin, scientific name nicotinic acid, is vitamin B3 and B6 is called pyridoxine. The most bio-available form of B6 is pyridoxyl 5 phosphate. There are many forms of B3 but the only one that can relieve inflammation from GPR109A, Niacin receptor 1, is standard niacin or nicotinic acid.

  • Thank you. I realised afterwards t hat I had muddled the names etc. Its the B6 and carbidopa link which interest me as I am starting to have bouts of dyskinesia. I take 4 sinemet, 1 azilect and have a 8 mg neuropatch. each day

  • If you are taking carbidopa or benserazide with levodopa you should take both niacin and pyridoxine because carb/benz...deplete both B vitamins. In the days prior to the introduction of carbidopa, there was a B complex multivitamin without pyridoxine. Levodopa without carbidopa, 5 only % of levodopa passes the blood brain barrier and the addition of pyridoxine speeds up the 'decarboxylation' of levodopa so nearly none of the levodopa would pass theough the blood brain barrier.

  • I take SloNiacin at bedtime. If there is any flushing, I don't notice since I am asleep.

  • DBS?

  • Hi terbearsorare. The first thing we have to understand is that the pharmaceutical industry does not make medicine that is designed to cure Pd. It only makes medicine that endeavors to hide one or two of the symptoms.

    I often get castigated for saying that if the medication you are taking does not do anything for you, then stop taking it. It may not be wise to suddenly stop taking medication, you might have to ask your doctor to advise you how to go about doing that. He/she may not be very keen on you stopping medication, but if it is not doing anything to help you, then why take it?

    If you do really have Pd, then the best thing you can do is to start Fast Walking, which has been proven to reduce the severity of some of the symptoms. Let me tell you my story:

    My first symptom started in 1963, when I found that I could not throw a ball properly. I was finally diagnosed with Pd in 1992, when my symptoms had slowly got worse and worse until I started to shuffle and the neurologist was able diagnose the Pd.

    Because of severe back problems, I had been going to the gym every day, six days of the week, until diagnosis. Then I increased the time to 90 minutes a day. In 1994 my symptoms had accelerated and I decided to stop going to the gym.

    Since 1994 I have been doing Fast Walking plus taking an MAO-b inhibitor, managing stress levels, keeping a positive attitude and doing regular mental stimulation. By 1998 most of my visible symptoms had disappeared. By 2002 I was able to come off all my Pd medication, and have continued to be medication-free ever since. I am 82 years old now and live a 'normal' life, full of purpose!

    You may think that you will not be able to do Fast Walking, but I have found that not to be true with many other patients. I go all over the world showing people how to walk properly, with only three exceptions among hundreds of seriously affected patients. Above all else, walking costs nothing and everybody's health improves, when they do fast walking, and if you put everything into it, then that may include yours.

    View my website - reverseparkinsons.net and contact me from there.

  • JohnPepper

    Hi John:)

    I have wanted to do what you are doing for years.

    One thing or another interfered.

    Being dizzy was the worst.

    After cutting down on Sinemet, the dizziness is gone.Yeah.

    Now my balance is way off.

    How does one start fast walking with this problem?

    Thanks:)

    Eva G.

  • Balance is way off for me too. I have to hold on to things,

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