• Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    


  • Content count

  • Joined

  • Last visited

Community Reputation

30 Excellent

About soccertese2010

  • Rank
    Advanced Member

Profile Information

  • Gender
    Not Telling
  • Location
  1. so when your IR C/L (immediate release) that you take in early morning doesn't work, what's do you do, take more in 45minutes? because pd affects my autonomic nervous system and causes high blood pressure, i use C/L to keep my BP down and was having to set an alarm to get up and take C/L every 3 hrs when my BP got worse - i was diagnosed 14 years ago. i was taking 1 50/200CR at bedtime but it wasn't enough. Taking 1.5 50/200CR (75/300) would get me thru the night without waking up maybe 50% of the time. One thing i've read was that taking CR with some fat extends it's affect, it slows gastric emptying. you might want to experiment with this, take the CR with small piece of buttered bread? i've read that any food will extend the half life of CR but it takes longer to kick in and lowers bioavailability since the food slows gastric emptying so you have to take a higher dose with food. i can't verify that eating fat will extend the life of CR and have never found a clinical trial testing it but did find a paper discussing problems with RYTARY effectiveness and the author suggested eating it with ice cream for the fat. " As with carbidopa/levodopa IR, Rytary can be taken with or without food. One gets the quickest and most consistent (initial) absorption taking it away from food, but if a patient experiences nausea, taking it with carbohydrate may reduce the nausea. Protein can reduce absorption, but whether this is clinically relevant depends on how sensitive to small dose changes the patient is. Interestingly, high fat meals delay absorption and reduce the amount absorbed, but can potentially lengthen the duration of benefit. Although this has not yet been studied, one might take Rytary at bedtime with a high fat snack such as ice cream, in an effort to extend benefit into the night as long as possible" the 25/100 kicking in after you wake up might be due to reduced gastric emptying, it decreases as we age, and the longer IR C/L stays in the stomach the more of the l-dopa is destroyed. constipation reduces the benefit of C/L to almost zero for me but i'm sure you've considered this. i assume you tried just taking a higher dose at this time? keep in mind that you are relying almost 100% on l-dopa from your pills and just how difficult it is to get enough l-dopa into your brain when evolution has created numerous enzymes whose job it is is to convert l-dopa into another amino acid. sleep might not be the issue, just needing more C/L when you wake up might be the issue just due to progression. just a lay person here,not a health care professional, but think about it, you only need on avg 1.5mg of mirapex to get adequate symptom relief but advanced pd'ers need 200-300mg of C/L. Assuming mirapex and l-dopa are similar in molecular weight, i.e.. one mirapex molecule has the same affect of 1 l-dopa molecule, and assuming maybe 50% of the mirapex gets into the brain and how much of that gets to where it's needed, one can assume you only need a tiny amount of mirapex or l-dopa in the brain, and based on mirapex dosing that seems to be less 1.5mg? So at your advanced stage where you aren't making much or storing much l-dopa in your brain, and with all the obstacles in your body that keep l-dopa getting into the brain, it is a challenge to take enough C/L to get a tiny amount into your brain but not take too much to cause dyskinesia. keep in mind that advanced pd'ers do better with continuous delivery l-dopa, dupdopa pump, so having that longer period without oral l-dopa while your're asleep might develop a situation where those enzymes in your system that break down l-dopa are no longer inhibited by carbidopa so you need a larger dose in the morning? just guessing here. as an aside, after being diagnosed 14 years ago and not wanting to take an agonist because of the potential side affects and having my MDS not very enthusiastic about it, he had me try amantadine - couldn't tolerate it - entacapone - not enough benefit - to extend my ON time. I was approved for DBS and I cancelled due to uncertainty about health insurance coverage with TRUMP - don't have MEDICARE - so things were looking pretty bleak so convinced my MDS to write a RX for an agonist of his choice. So i've been taking generic MIRAPEX for the last 3 months and have no regrets,. yet. No OCD, edema, dyskenesia and the benefits are my OFF's are bearable - much less sudden, i can eat with less negative affect on my C/L, have extended ON time from 2HRS to 3-4hrs and am going out more since i'm not afraid of an incapacitating OFF, sleep thru the night. I'm taking a low dose of .75mg 3 times a day and this is below the 3-3.5mg target dose. This "2nd honeymoon" might not last long if side affects pop up - i seem to have less appetite control but i'll deal with that. First month was not fun, felt like a zombie at times but i'm over that. Now working on figuring best dosing for I/R C/L along with CR. Just bringing up trying an agonist if you haven't considered it. DUNNO if you've tried rytary just at night, i didn't consider it due to the cost.
  2. MCOMES, TEVA acquired ACTAVIS but then sold the rights to the ACTAVIS and TEVA carbibopa/levodopa generics to MAYNE PHARMA. I believe MAYNE pharma is only producing the ACTAVIS generic and the TEVA pill is not available anywhere. the MAYNE website cross references the TEVA ndc's to new MAYNE ndc's but if you look at pictures of the MAYNE tablet it is the ACTAVIS tablet. this package insert states the MAYNE pill is made by ACTAVIS i may be wrong but i believe the TEVA 25/100 tablet is not being manufactured. i did very well with the TEVA generic and preferred it to the ACTAVIS and the MYLAN. I tried actual SINEMET and i did better with the TEVA. I think the MYLAN 25/100 generic is SINEMET, i think MYLAN makes it for MERCK. The tablets are identical except the MYLAN is scored and sinemet isn't.
  3. best of luck. diagnosed in 2002 at 48. not too bad at 63. exercise is imho the most important treatment, i've heard more than one MDS say you take drugs so you can exercise so i wouldn't be that worried about taking meds sooner than later, , especially starting sinemet (carbidopa/levodopa). for exercise, i use a regular bike on an indoor trainer, the trainer on sale was about $150.00. i follow the jay roberts, pedaling for pd recommendations, kind of, 45min 3 days a week, 80 rpm, 70-80% maximum energy usage (or whatever). your're trying to maintain neurons/stimulate dopamine receptors, might be thru increased blood flow, your muscles secreting chemicals that affect neurons, possibly encouraging more branching, i'm not an expert. exercise programs which force you to change direction, stimulate the most neurons are also effective, maybe you can find out what is being done at a local research university if there is one nearby. when i was first diagnosed was playing/coaching soccer, continued for another 3 years. after every soccer game, pd symptoms were reduced for about a day. quit soccer when i started to get charlie horses. so i can attest to how super aerobic exercise reduced my pd symptoms temporarily and might have slowed my progression. i also tried every alternative treatment that i found on the internet, chelation therapy to remove mercury via IV's and later DIY at home, low dose naltrexone, IV glutothione, trying every supplement, not sure if anything helped. my point is if some herb or supplement really really helped in the age of the internet there wouldn't be a mystery about the effectiveness. l take curcumin, 1/2 of a multi-vitamin once a day. i take other supps less often but won't list them here. research is going gang busters, there is a good chance that in the next 5 years there will be treatments that will slow down or reverse pd, so try not to worry. you should sign up for the MJFF trial finder. and stay on top of the new research and have your bags packed, ready to go for the "cure", it's likely not going to be offered initially everywhere. i suggest you get the book "THE NEW PARKINSON'S DISEASE TREATMENT BOOK" by AHLSKOG. The older edition is still useful but i suggest the newer version. It's mostly about medication, little on exercise or alt-medicine. it gives you all the info you need to double check what your neuro is asking you to take, they aren't perfect and are seeing a huge amount of patients. start learning about disability insurance, not that you'll be disabled soon but so you'll maximize your benefits AND EVENTUALLY GET SSDI, having pd doesn't guarantee you'll get it. totally different insurance policy than SOCIAL SECURITY. one last thing, all the new pd drugs cost a lot. if your MDS/NEURO prescribes one of them and you have a large copay, ask him/her how much better this new drug is compared to sinemet immediate release or sinemet cr.
  4. here's the information page on mayne 25/100 C/L there's a picture of the bottle label. MANUFACTURED BY ACTAVIS DISTRIBUTED BY MAYNE Dispense in a well-closed, light-resistant container as defined in the USP. Manufactured by: Actavis Elizabeth LLC Elizabeth, NJ 07207 USA Distributed by: Mayne Pharma Greenville, NC 27834 40-9267 Revised — January 2016
  5. i can't get teva so i'm going to have to find another generic that will hopefully work as well. teva owned Actavis so i assume MAYNE got the Actavis CARBIDOPA/LEVODOPA and gave it a new MAYNE NDC and is only selling that C/L and the TEVA generic was put on the shelf? If that's the case, they're sure going to have some angry pd'ers. i have tried the brand name sinemet and liked the teva generic better.
  6. whoops, missed the 3x a day in your message, sorry. if i had to choose between two drugs, everything else being equal, i would pick the one that let me exercise the best. exercise may slow down progression and also benefits you in many other ways. sinemet will likely be superior to pramipexole since it binds to more dopamine receptors than do the agonists like pramipexole. sinemet is worth trying. mucana has l-dopa so your're already taking one of the chemicals in sinemet. i'd stop the mucana if you try the sinemet. a number of people posting on pd message boards praise mucana, the major drawback that i see is quality control.
  7. you might be better off with sinemet, if you're not happy with what your're currently taking stop the mucana and add sinemet, you could start with 25/100mg/day and if there are no problems then try 200mg/day and if that isn't enough then 300mg/day. i'm not a doctor and i assume you have to have a doctor write you a RX and you'll start the sinemet (carbidopa/levodopa is what you'll be taking or benserazide/levodopa) under their supervision. a great resource is THE NEW PARKINSON'S DISEASE TREATMENT BOOK by J.ERIC AHKSKOG who has treated pd'ers at the mayo clinic for 30 years, he's a firm believer in starting with sinemet. 1st edition is very useful too. europe uses different sizes than in the USA. There is a new longer lasting C/L called RYTARY but it's very expensive and intended for more advanced patients. not sure why you are taking only .75mg pramipexole, usually that is too small a dose to be effective, 2-3grams is usually when it becomes effective. 1mg of amantadine, did you mean 100mg? what symptoms are you trying to treat with it? sinemet is the brand name of carbidopa/levodopa and is made by MYLAN for merk. i've tried it, it didn't work any better for me than the TEVA generic which unfortunately is no longer made by TEVA, they sold the rights to a company called MAYNE which also acquired the ACTAVIS C/L from TEVA and is only making the ACTAVIS generic from what i understand. the merck product - sinemet - is much more expensive so get a generic and you might find one works better for you. i have no info on isradipine nor know anyone taking it who has pd and high blood pressure. here's an article on sinemet phobia What's Hot in PD? The End for Levodopa Phobia: New Study Shows Sinemet is a Safe Initial Therapy for Treatment of Parkinson’s DiseaseWhat's Hot in PD? - July 2014 The newest study published in this month’s Lancet included newly diagnosed patients randomized to receive a dopamine agonist, a monoamine oxidase inhibitor (MAOBI) or levodopa. The primary outcome was the mobility dimension on the Parkinson’s disease questionnaire (PDQ-39) quality-of-life scale which is a validated way to measure meaningful improvements. There were 1620 patients randomized and followed. The three year follow-up revealed the PDQ-39 mobility scores were better in levodopa as compared to the other two groups. Follow-up at 7 years revealed levodopa was the best therapy, but there was a small difference favoring initial therapy with the MAOBI when this drug was compared to a dopamine agonist. The treatment related side effects were less in levodopa. Over the past two decades the trendy phenomenon, referred to as levodopa phobia (intentionally avoiding prescriptions for levodopa) likely impeded the best clinical care for many Parkinson’s disease patients. An accompanying editorial to the recent Lancet article pointed out that levodopa phobia and also the favoring of agonist therapy was primarily driven by aggressive pharmaceutical marketing. The Lancet study revealed that all three therapies should be considered, but ultimately that the choice of drugs should be tailored to the individual patient. Patient-rated mobility in this study clearly favored initial levodopa therapy. What all this adds up to for patients and for Parkinson’s sufferers is that Sinemet and Madopar should be considered safe and effective as initial treatments for Parkinson’s disease. The doses and intervals should be frequently adjusted by an experienced neurologist/practitioner in order to maximize benefits, and to tailor to individual symptoms. Patients and families should keep in perspective that the “talk” about levodopa being toxic and accelerating disease progression (levodopa phobia) can prove a major distractor to good care practices. Precious minutes in the doctor-patient relationship should not be wasted on these claims, and prescribers should not avoid or under-dose this critical therapy, especially in patients with treatable symptoms. Critics of Sinemet and Madopar will need to bring forward much stronger human data if they wish to change clinical practice. In the mean time, we need to serve our patients by sharing with them the weight of the evidence which strongly supports that levodopa replacement therapy is not toxic, does not accelerate Parkinson’s disease, and can be used safely as initial therapy.
  8. gardner brought up an excellent point, that your SSDI benefit is based on a 5year employment window and can go down to zero whereas your SS benefit can never go down even if you stop work. if you think you can work longer at your current job or any other job and don't have to apply right away then you should determine if your benefit will go up significantly if you continue to work or GO DOWN. i found the local SS office very helpful at least where i live, it's worth visiting them for advice, believe it or not they are on your side.
  9. you are taking the activas brand. black or green tea has amino acids that might interfere with l-dopa, probably not enough to be significant but worth trying just drinking water with your sinemet. it is unusual that you do fine all day, no fatigue? and then you come home and you feel tired. one might speculate you aren't taking enough sinemet in the evening. just curious, how long have you been taking the activa ® and when were you taking teva, did you have the same problem? can you be more specific what you mean by tired? sleepy, brain fog, nauseaus? sinemet can cause low blood pressure, have you checked that? CR is different than RYTARY. RYTARY is a combination of IR and a new CR formulation and could be very expensive since it just came out and there are no generics. CR has been around for at least 10 years, there are generics that your insurance will pay for like IR.
  10. just curious benderet you mentioned a roche generic, I don't think that is available in the U.S. the make a pill for europe i think. can you post what's on both sides of the pills you are taking?
  11. it sounds like you know food/protein can reduce the affect of sinemet but i have to ask when do you eat dinner and on avg how much protein do you eat? do you drink anything with amino acids before 7pm, even tea? do you take any supplements around that time? energy drinks? i assume you've tried eating nothing 1hr before the dose that covers you at 7pm and no food/supps 2 hrs after? you might want to play around with 50/200CR at times, maybe in the evening. it has much less bioavailability than IR, 60-80% and might last 4 hrs and have an equivalent max of 120mg to 160mg compared to IR. THE problem about CR is predictability, it takes an avg 90-120min to kick in and sometimes not at all since it dissolves so slowly. neuros seem reluctant to prescribe it because of this unpredictability. i like the mylan brand. if food isn't a problem then you could time your dosages closer together. make sure your're well hydrated and drink 6oz-8oz of water with sinemet. adding tbsp of lemon juice might speed gastric emptying, the longer sinemet stays in your stomach, the more is converted to dopamine which can't pass the blood brain barrier.
  12. just to be sure, you think what happened to me is possible? my MDS is quite skeptical and i cannot find a similar first person account anywhere and i'm reluctant to try pramipexole again just to prove it happened. since that episode my pd symptoms have gotten worse, new chest pains that strangely enough only occur when i'm off. and after 14 years, the off comes on very suddenly, along with rigidity in my feet, left shoulder, right hand, abdomen and newly in my right shoulder. i was approved for DBS but postponed it because i was worried about having insurance in 2017 based on the election results, i couldn't be certain if i would have insurance to pay for anything that might go wrong for 3 years after the operation or if the batteries had to be replaced sooner than expected. i'll be 65 in 3 years. now i'm taking 150mg C/L every 2 hrs alternating/combining with50/200 3-4 times which can give me 3hrs per dose if lucky but this regime is obviously going to wear me out. i guess i'll try the other agonists if i can't get reapproved for DBS.
  13. my independent pharmacy can't get mayne c/l, out of stock at wholesaler and no date when they'll have some. he also said price is more than 2x that of teva. not sure what's going on here, hopefully there isn't a major cost increase cuz hard to believe 1 generic mfg could get paid 2x, 3x if there is competition. so stump, it would be interesting to see what your copay was. usually pharmacy dispenses cheapest generic so will be interesting to see if your copay was higher.
  14. hi dr. okun, after 2 days of taking PRAMIPEXOLE .125mg tid, i developed sudden sharp/jolting short lived pains in the a chest and left shoulder, ocassionally in the back if i moved those muscles. pain started out small and then got severe enough that i could scream. i stopped taking it and the pain went away. have you ever seen this? i see muscle pain under side affects but this came as quite a surprise to my MDS.
  15. LOL, nothing is free, they jack up the cost of RYTARY to paying customers.. just put me on ignore. i assume they'll be coming out with RYTARY 2, 3, there are a few other new CR's in trial, evergreen is doing one now. who'd thunk that 40years after sinemet's introduction we'd be wasting our time talking about C/L much less PD. imagine if TRUMP was diagnosed with pd or someone he cared about? we'd have a cure even if it cost trillions! Intec IN 11 004Phase III - A Study to Assess the Efficacy and Safety of the Gastric-retentive AP-CD/LD in Advanced Parkinson's Patients (Accordance) Description The purpose of this study is to determine whether the gastric retentive Accordion Pill™ Carbidopa/Levodopa (AP-CD/LD) is more effective than the commercially available immediate release Carbidopa/Levodopa in reducing motor fluctuations such as "off time" in advanced Parkinson's disease patients. Who may be eligible to participate? Subjects aged 35-85 years old, diagnosed with idiopathic Parkinson’s disease. Subjects must be taking at least 4 doses of levodopa containing medication per day with at least 2.5 hours "Off time" per day on average. Investigator: Daniel Burdick, MD For More Information: Marsha Merrick - 425.899.3115