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About soccertese2010

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  1. soccertese2010

    Requip Side Effects ...I'm so sick!

    NOT that this something you can do but i've read posts about requipXL where the patient did much much better on the brand name REQUIPXL very expensive. not sure why you had to titrate down your mirapex, i've read where you can usually crossover to requip overnight. have you tried regular requip? one thing i've experienced is major differences in generics, some made me feel awful and i luckily have an independent pharmacist who will get the generic i request rather than order the cheapest one. what i find interesting is that when reading posts from brits on another board, seems like a lot are on REQUIPXL and doing ok. i'll try to find out which generic they use, might not be available in the U.S.
  2. soccertese2010

    deciding about drugs

    I am a layperson who was diagnosed with pd 15 years ago at age 48 so i can only relate my experience and the experiences of other pd'ers i know 1. to quote a neurologist i know, "you take pd meds to help you keep exercising since exercise may slow progression". if you couple that novel theory with increasing chances of a cure then imho caribidopa/levodopa (generic sinemet) might be worth considering since it will likely give you the best benefit. i played on a very competitive men's soccer team for 3 years after being diagnosed, taking mirapex in the 3rd year and quitting soccer when i could no longer compete well enough just taking a minimal amount of mirapex and was afraid of staring sinemet. quitting men's soccer was probably a good idea, guys just take the game too seriously and there was too great a chance for injury, but i also cut back on other vigorous exercise such as running, basketball, x-c skiing and maybe as a result started to progress faster. i eventually started on sinemet in year 5 and at 63 i do pretty well on it with no dyskinesias and the only side affect is low blood pressure if i take too much. i did have the well known "honeymoon" period for about 7 years where i didn't depend on most of my l-dopa from sinemet (my brain was still producing/storing useful amounts of dopamine) so timing wasn't critical. my point is i don't think you'd be risking anything by trying sinemet for a month, you can always quit. some of the older literature described studies where sinemet damaged nerve cells in culture so people held off taking it until they had too. this has been disproven i believe by finding no damage in the brains of people who have had to take sinemet for non-pd diseases, think they had dystonia. i know a number of pd'ers whose neuros just prescribe azilect and they are slowed by arm, hand and leg rigidity and just accept it rather than add sinemet. https://www.michaeljfox.org/foundation/news-detail.php?ask-the-md-myths-about-levodopa i've tried just about every alt-med treatment for pd and numerous supplements and none helped much. chelation therapy, i.v. glutathione, low dose naltrexone, coq10. the only thing that helped was exercise, after a soccer game i felt great for a day. think about it, with social media able to distribute anyone's success with an alt-therapy, how can there be any uncertainty about any alt-therapy working or not working? if it helped there would be no doubt, we'd all be doing it. if you decide to try carbidopa/levodopa keep in mind that generics are not equivalent and one brand might work better for you than another, for me, the mylan brand works best. personally, i'd like to know sinemet worked now rather than waiting 5 years and finding out it didn't. i suggest you read the book THE NEW PARKINSON'S DISEASE TREATMENT BOOK by J. ERIC AHLSKOG.
  3. soccertese2010

    Just diagnosed at age 40

    hi amy2beth currently 63, diagnosed at 48. imho exercise is #1 to try to slow progression and possibly make you feel better. there's lots of research on slowing progression and/or reversing pd so you should stay abreast of this research. there might be a cure in the next 5 years. before i was diagnosed i had 2 frozen shoulders and now when my medication wears off my left shoulder and right knee hurt. if you qualify for social security disbility get familiar with how to apply. SSDI is a seperate insurance system that straight SS and you can really screw up if you don't have the doctor backing you up thru regular documentation of your progression and if you wait too long to file after you stopped working. i was denied for SSDI, being a 1 person company do no manageement describing how my pd interferred with my work, not seeing my neuro regularly, waiting to lo'ng to file killed my case. bottom line is keep informed, exercise, don't be afraid of sinemet, and stay in the best shape you can so you'll qualify for the cure when it becomes available. don't get suckered in by supplements, chelation therapy, alternative therapies mentioned on mesage boards, you don't know if the poster actually has pd. best of luck
  4. soccertese2010

    Mylan C/L On Back Order?

    i'm also having problems getting those mylan drugs so settled for ACTIVIS CR which i tried maybe 2 years ago and thought was less effective than MYLAN, haven't tried the new ACTIVIS CR RX yet. my independent pharmacy was able to get mylan 25/250 so asked my dr. to write a RX which he kindly did. i think there's going to be more carbidopa/levodopa supply chain interruptions, either climate related like the hurricane which disrupted C/L in puerto rico, ingredient shortage related, other manufacturing problems or recalls so common sense says have at least some extra 25/100. teva selling their generic teva 25/100 and 25/250 to MAYNE was not in the best interests of pd'ers to say the least since MAYNE also obtained activis from TEVA and that's the C/L they are selling, not TEVA's formula. at least that's my understanding.
  5. soccertese2010

    A shortage of Carbadopa/Levadopa CR????

    i'm in seattle, my 50/m200cr mylan refilled on 8/4. asked the pharmacist at the independent i've used for 14 years if any problems and he said no. just my opinion but if this raw material shortage is true it's almost criminal, the C/L companies should have months of raw ingredients on hand, the stuff is cheap. one would think their would be an uproar by the pd associations and pd'ers if this is true and pd'ers aren't getting their meds. i assume most f the ingredients come from china and india.,
  6. soccertese2010

    A shortage of Carbadopa/Levadopa CR????

    have you tried to get 50/200cr which is okay to split? just curious, which brand of CR are you getting? if your're not getting MYLAN can they get that brand? this brings home the point that it's a good idea to have at least 1 month's reserve of pd medications. it's a shame that the number of C/L manufacturers are declining, it's cheap and works well yet i'm sure you could get RYTARY or AZILECT and pay thru the nose. we need to complain to our legislatures, fewer generics and i think were're getting poorer quality.every time a large drug company sells it's c/l drugs to some minor manufacturer. just my opinion
  7. soccertese2010

    Taking Sinemet in the middle of night

    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" https://www.scribd.com/doc/258488669/How-to-Dose-Rytary-by-Robert-A-Hauser-MD-3-12-15 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.
  8. soccertese2010

    weight loss and medication ajustments

    here's a study that recommends lemon juice. i couldn't take 30ml with every dose and the study didn't say the dose kicked in any quicker. but worth a try? [Gastric acid secretion and absorption of levodopa in patients with Parkinson's disease--the effect of supplement therapy to gastric acid]. [Article in Japanese] Yazawa I1, Terao Y, Sai I, Hashimoto K, Sakuta M. Author information Abstract Since an oral regimen of levodopa has been instituted for treatment of Parkinson's disease, its absorption and metabolism has been well demonstrated. However, its chemical characteristics of high solubility in acid solution and low solubility in water have not been well known. We paid attention to this characteristic and studied the relationship between its absorption and gastric acid secretion in 38 patients with Parkinson's disease who became refractory to therapy of levodopa. We measured the pH and amount of collected fasting gastric juice. Gastric acid secretion was decreased in 22 patients (58%). In ten of these 22 patients, 30 ml of lemon juice was prescribed in every administration of levodopa as a supplement to gastric acid for two weeks. Increases of L-dopa concentration after 60 min. and 180 min. were observed after lemon juice supplement therapy. Among the Parkinson symptoms, rigidity, akinesia, and small step gait were improved in every case except one patient who showed decrease of L-dopa concentration at 180 minutes. However, improvement of tremor was less remarkable. We consider this supplement therapy to gastric acid is one of the effective and useful methods in the management of Parkinson's disease. the root of the problem is gastric emptying, you want this to happen as quickly as possible since the longer C/L stays in your stomach, the more is broken down and doesn't reach the small intestine or the brain. so any food is going to delay gastric emptying, especially fatty foods. i was taking C/L every 2 hrs after 14 years from diagnosis and it's basically impossible to have a normal life with wearing off being so sudden and significant interference from food. i played around with controlled release, trying to take it as soon as the IR kicked in along with 50mg of C/L. The dose would be 150mgIR, wait for it to kick in, then take 50mg of IR + a 50/200CR + a tsp of olive oil, butter, anything with fat which would delay gastric emptying which is just the opposite of what you do when taking IR, from what i understand, you want to delay gastric emptying when you take CR, you want it to remain in the stomach, slowly releasing C/L, rather than quickly make it intact to the small intestine where it just whizzes past the area where C/L is absorbed. So the logic was: 1. Taking the CR along with the IR would possibly counteract the competitive inhibition of C/L crossing into the small intestine and brain by some amino acids by providing a higher concentration of C/L but not too high as to cause dyskinesia. 2 . take the IR C/L by itself and assume 45min for the C/L IR to start to reach your brain. 3. As soon as i feel the IR C/L kick in i take the 50mg of IR C/L and a 50/200CR. It takes at least 90min for the CR to kick in for me, so if i take it with 50mg of IR the IR will give me the C/L i need until the CR kicks in. I tried this and it worked a few times and i gave up. It only worked with one and a half 50/200CR (75/300), i could eat a bowl of oatmeal and still be on but that dose of CR at times just made me sick. But i solved my food problem. it was as simple as just taking generic mirapex, something i resisted and my MDS never recommended it and i had to nudge him a little to write me a RX, he was worried about OCD and other side affects. After 3 months i'm tolerating .75mg 3 times a day and have the option to go to a higher dose. It was tough getting used to it, felt like a zombie at times and still do once in awhile. the agonist pluses far outweigh the minuses. i'm taking 150mg C/L every 3-4 hrs - still playing around with my C/L dose - and if i take it an hour later than i should i'm not OFF, I can still function well enough that i feel confident to go out and socialize more. I used to take a 200cr at bedtime and rigidity would wake me up 1-2 times and i'd have to take more C/L. With the generic mirapex i take a 200cr and that's it, not even sure if i really need it My speech is better, my OFF symptoms are less severe, i can't even say i have OFF's anymore. So it's like having a 2nd honeymoon. Maybe better. A negative is i have put on weight and have to watch what i eat. Another negative is i am lazier when ON, have to force myself to exercise and i feel slower. i no longer have to worry about constipation seriously negating the affect of C/L which had very serious consequences, the fe times i was seriously constipated i was very immobile until i got unblocked. I would try to explain to my doctor,my mds,my family that the constipation was slowing down my gastric emptying and my C/L was getting destroyed and just taking more wouldn't solve the problem. as long as i take my generic mirapex every 8 hrs i'm going to have a little in my brain and that's all i need. i'm 62 and i have no idea how long i'll be able to tolerate generic MIRAPEX but i'm enjoying it while i can. i know others can't tolerate it and i might be in the minority that can. i did have an interesting experience, the first fill of my generic mirapex RX was the generic made by GLENMARK. My next fill was a generic from TURRANT, both INDIAN companies. The TURRANT generic really screwed me up, just immense mental fatigue and not able to do much of anything. My independent pharmacist now gets the GLENMARK generic for me. The generics are completely different in color and size. Just my experience, might be the only person with this experience.
  9. soccertese2010

    Differences in c/l by brand

    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. http://www.drugstorenews.com/article/mayne-pharma-closes-acquisition-teva-allergan-products https://www.maynepharma.com/products/us-products/generic-products/new-products/new-ndc-numbers/ 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 https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=a67f0f76-97b7-4149-9711-4748de152910&audience=consumer 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.
  10. soccertese2010

    Newly Diagnosed and scared

    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.
  11. soccertese2010

    TEVA 25/100 300% PRICE INCREASE

    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
  12. soccertese2010

    TEVA 25/100 300% PRICE INCREASE

    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. http://www.tevapharm.com/news/teva_completes_acquisition_of_actavis_generics_08_16.aspx
  13. soccertese2010

    Isradipine trials and sinemet

    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.
  14. soccertese2010

    Isradipine trials and sinemet

    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 http://www.parkinson.org/find-help/blogs/whats-hot/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.
  15. 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.