Forum Replies Created

  • David

    Member
    December 29, 2020 at 4:34 pm in reply to: Has anyone tried Mucuna Pruriens (Dopa Mucuna) as a C/L replacement?

    <h2>Mucuna Pruriens (Dopa Mucuna) is not a replacement for carbidopa/levodopa, it only replaces levodopa, and with very poor precision. Carbidopa is very important for preventing peripheral breakdown of levodopa, before it ever gets to the brain.  Inbrija inhaled levodopa has the same problem.  Without carbidopa, you get all the nausea and less of the benefits of levodopa.</h2>

  • David

    Member
    November 28, 2020 at 1:04 am in reply to: Ongentys Approved in Japan to Help Treat Parkinson’s ‘Off’ Periods

    Answer to my own question above: Ongentys (opicapone) is significantly better than Comtan (entacapone) for reducing motor fluctuations, as found in a number of clinical trials that tested the two medications directly against each other, head-to-head. They both work the same way, by inhibiting an enzyme called “COMT” (acronym for catechol-o-methyltransferase) that breaks down dopamine in the brain, which prolongs the effect of levodopa. However, Comtan only provides benefit for a few hours, but Ongentys has a long half-life in the brain, so it can be taken once a day and provides smooth predictable benefits all day, compared to Comtan, with its short half life, which has a fluctuating level throughout the day due to the need to redose every few hours. My neurologist switched me from Comtan to Ongentys and I immediately noticed that my motor fluctuations reduced, and my medication regimen is easier because I don’t have to wonder whether an OFF period was due to low levels of levodopa or low levels of Comtan. In summary, Ongentys does the same job as Comtan, but does it more smoothly and predictably, which I estimate has gained me about an hour per day of ON time without dyskinesias, on the average. Ongentys is not generic and was not on my formulary, but it is covered by my Medicare Part D (Blue Shield of CA Enhanced Coverage Part D Plan) with prior authorization.

  • David

    Member
    September 22, 2020 at 5:14 pm in reply to: Has anyone tried Nourianz?

    I was prescribed Nourianz (istradefylline) 20 mg a few months ago. I use it sparingly, only about one or two days per week, as needed for severe “off” episodes that do not respond to the highest doses of levodopa I can take without causing dyskinesia. I do not use Nourianz every day, as prescribed, because:
    1) Nourianz seems to exacerbate my chronic constipation, which can be very severe and has resulted in fecal impaction, in the past. To reduce this risk, I increase my daily dose of Miralax, prunes, wheat bran, water, etc, when taking Nourianz.
    2) Nourianz is extremely expensive for me, even with the highest-cost Medicare D plan I have
    3) Nourianz also seems to exacerbate my chronic insomnia
    Overall, Nourianz 20 mg taken once does seem effective at improving the bradykinesia, weakness, rigidity and generalized feeling of extreme awfulness which are my “off” symptoms. It generally takes effect within about an hour, and the benefit lasts for several hours. I have not exceeded 20 mg total dose on any day.
    WARNING: I do not advise or recommend that you take or not take Nourianz, or any other therapy. Please discuss any medications with your physician.

  • Ongentys (opicapone) was recently approved by the FDA as an oral,add-on daily treatment for Parkinson’s patients experiencing off periods while on levodopa. Ongentys increases the amount of levodopa reaching the brain by blocking an enzyme called catechol-o-methyltransferase (COMT),that breaks down levodopa in the blood.  Ongentys was found to be superior to placebo in reducing “off” periods — times when the beneficial effects of levodopa wear off before a new dose can be taken.

    I already take COMTAN (entacapone), a generic COMT-blocking drug. Has Ongentys been compared directly to Comtan in any clinical trials? Is there any reason to believe Ongentys may be more effective at reducing off time, without increasing troublesome dyskinesias? I take Rytary plus Comtan six times per day, and I would welcome replacing those 6 Comtan tablets with a single Ongentys pill, if the symptomatic benefits are equal or better, and the price of Ongentys is not prohibitive compared to Comtan.

  • David

    Member
    February 18, 2020 at 1:32 pm in reply to: Wondering About Azilect?

    I have taken rasagiline (Azilect or its generic form) for over a decade, without any problems.  The price dropped when it went generic, and should drop further when manufacturers other than Teva (the original patent-holder) become available.  I do not notice any strong effect from stopping or resuming rasagiline, but I stick with it because the clinical trials showed benefits, and I have not had any adverse effects.

    What “negative stuff” have you read about rasagiline or Azilect, aside from it being expensive and having weak beneficial effects?