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Found 68 results

  1. Perle Sorah

    Mucuna and Sinemet Together?

    Can Mucuna and Sinemet be taken together? I take Sinemet 25/100 ever 6 hours (3 doses daily) and am considering Mucuna in between doses, with the last dose to possibly help sleep.
  2. Dear Doctor Okun! I am 65. Work full time. Diagnosed with Parkinson’s in 2012. Up till August 2018 was treated with Sinemet / 2 tablets 100/25 X 5 times a day – every 3 hours (7 AM to 7 PM) and Mirapex (1 mg tablet X 3 times a day). While my Sinemet dose has been increased slowly, my Mirapex dose has not been changed since 2015. It was never perfect. But I functioned some-how till summer 2018, when my condition worsened. I lost my sleep. My stomach was irritated. I would sleep 2 hours max at night; was mostly restless at night. During the day I was very tired, my tremors got worse.The single dose of medication would wear off in about 2 hours – did not last for 3 hours. My neurologist suggested to try Neupro/Rotigotine – 24 hours patch. We started one month ago. I had to take some time off the work as it did not go as fast and smooth as we hopped! I withdraw from Mirapex (very slow - as I experienced withdrawal effect when tried to go faster initially) and gradually increased the Neupro dose – 2 Mg - first week – 4 Mg - second week, –6 Mg - ... - 8 Mg ... I tried 8 mg Neupro/24hr patch for a few days but felt that the dose is too strong for me. - felt it was overstimulating my brain. At this point in time is around 1.5 week as I am on Neupro 6 Mg/24h patch and 2 tabs of Sinemet 100/25 X 5 times a day – every 3 hours (7 AM to 7 PM). Sleeping got bit better / 4 – 5 hours at night. My stomach has calmed down. But the following feels worse. At night, the new medication seems having too strong drowsy effect on me. It is very hard to wake-up as needed to go to bath room at night; very difficult to move in bed, stand up from the bed and walk at night and in the morning - my wife helps me. I did not need my wife 's help at night before when using Mirapex. The balance and moving/walking at night /morning is very poor and laborious. In the morning, I have to take Sinemet right after wake up - only after that I can dress, brush my teeth, walk down the stairs, etc ... I could dress slowly and go down the stairs prior to taking any Sinemet in the morning prior to my medication change. During the day - I feel that I am under-medicated overall. My Sinemet dose wares off in about 2.5 hours. My balance, walking is worse, my endurance and energy decreased compare to my "best days" back in May - June 2018/ To be fair, I had some worse days with the Mirapex also. Currently when waiting for Sinemet to go “ON”, my neck, shoulders, legs, arms become very stiff; hands intensively shaking . Usually it takes 30 min or less for Sinemet to get “ON” . Shaking stops. Muscles relax. I often feel a bit drowsy during the day time also. If I take a nap or fall asleep during the day - waking up takes long time and for the following dose of Sinemet to get ON - would need to wait twice as long as usual - up to 1 hour. I am sill off work. Would love to go back to work when my condition improves I read your book: Dr. Michael Okun: “Parkinson's Treatment: 10 Secrets to a Happier Life”. Tried to think on how to apply some of “the secretes” to my case. Questions : I was thinking that I may be able to tune the Sinemet time/dose to optimize the overall medication action. I could try to keep the dose of 2 tabs of Sinemet but apply it more often - every 2.5 hours (instead of 3 hours) starting at 7 am and continue to 10 PM when I go to sleep. 1) Is this the right approach to try in my case ? What do you think ? 2) What could you recommend to try to optimize my Sinemet with Neupro medication? 3) What else would you recommend to try at this point? 4) Could it be that Mirapex ( 1 mg X 3 times daily) was providing a stronger support compare to Neupro 6 Mg/24h patch at the day time ? Thank you and best regards!
  3. I'm 43 and was diagnosed with YOPD 2 years ago though I was getting fatigue for 2 years before my diagnosis. I was put on Azilect and Mirapex ER (3mg/day) but last March I got off the Mirapex due to some unpleasant side effects. I got on Sinemet 25/100 and was started at 2 pills 3 times a day. IT worked way better than the Mirapex and I really have no complaints, except my right hand, when resting, would flap back at forth at the wrist slightly, which had never happened before. I saw my neuro, who saw it and said it was a tremor because its too early to get dyskinesia. When I reminded him I'd never had a tremor until then he told me maybe the Mirapex had been masking it. I accepted this but after a few months the movements have spread. My head nods forward or back when I talk (sometimes shakes sided to side instead) and my arms bend and unbend at the elbows. It looks like dyskinesia, not tremor. I have dropped the dose to 1 pill four times a day but this causes the PD to come back and I get cramping and stiffness in my arms. When I go back up to 6 a day I feel better but start with what I am now convinced is dyskinesia. While waiting to see my neruo again I wanted to ask you all two questions. 1. Did any of you get dyskinesia immedietly upon starting SInemet? 2. What did your doctor say to do? Add a comp inhibior? Raise or lower the caribopa to smooth out the dopamine uptake? I APPRECIATE ALL OF YOU BUT PLEASE DONT GIVE ME ADVICE IF YOU HAVE NO EXPERIENCE WITH TREATING SINEMET DYSKINESIA
  4. I was diagnosed with T1 Diabetes in 2008 (I was 49 at the time) and about 3 months ago started Sinemet for PD. In the past month or so my Blood Glucose and/or insulin resistance have spiked up until about 12:00 noon. I've read some research regarding Sinemet's possible influence on what's happening. Neither my Endocrinologist nor my Neurologist has sufficient experience in each others field to know what's going on. Any ideas here so I know if this is a new paradigm where I need to permanently adjust my insulin dosage? I'm also taking 60mg of Cymbalta and 30mg of Remeron, as well as Synthroid for Hashimoto.
  5. I was formally diagnosed in 2011. Shortly after this occurred, because I have a 40 year background in natural medicine, I started to try various natural protocols that had been shown to be effective for some people with Parkinson's. One of the first approaches I tried was Mucuna. Within a month, I dropped this approach because it seemed to be doing nothing for me. Little did I know that it would not be many years before I found out that virtually all the Mucuna supplements in the states contained usually no more than 15-18% L-Dopa. This information made it easier to understand why I had experienced no success with it. In 2016, I was contacted by a friend with Parkinson's who lives in Europe and had been taking Mucuna extract that was 98 - 99% L-Dopa. Roughly 3.5 years ago, I became so dysfunctional due to the symptoms of Parkinson's that I became almost bedridden for 2.5 years and 100% dependent on my wife for all daily activities. I took Mucuna extract at the 2.5 year point of being stuck in bed and in less than a week, I was out of bed and 98% independent. I will say that again... In less than a week, I was out of bed and 98% independent. I started with 250 milligrams 4 x/day. Now, 1 year later, I take between 800 -1,000 milligrams 5x/day and have been using that dosage for approximately 6 months. Here's my concern... There is much information online that states that long term use of Mucuna is safe. However, it is clear that the substance used in all of that exploration was the whole herb. I have not been able to find any information regarding long term use of Mucuna EXTRACT. ANY HELP WITH THIS EXPLORATION WOULD BE DEEPLY APPRECIATED! This month I am starting a kind of an "alchemical" experiment. I have placed one pound of Mucuna whole herb from Banyan Botanicals into a gallon jar and have filled it with the highest quality Vodka I could find here. I am not able to get grain alcohol where I live. I have placed the jar in a dark cupboard and am shaking it vigorously each day. After roughly three weeks, I will add my Mucuna whole herb "tonic" to the Mucuna extract each time I take it.
  6. What is a benefit of starting Requip XL and not sinemet? Right now I am taking azilect 1mg which helps a little with slow movement and stiffness. Tremors are not affected. Reading about side affects and evaluating should I ask MDS to try sinemet first just to see what will be improvement. Is it common to have a success with Requip XL over a long run( year or more ) or it just usual transitional phase to sinemet . I am 38 year old and diagnosed 5 months ago. Need to start meds to keep functioning at work.
  7. since 2012

    Liquefy Sinemet + Lodosyn

    My mom is not opening her mouth sometimes wide enough for me to put her medicines in and then sometimes just lets them sit in her mouth. I've also been concerned she has absorption issues because her symptoms have really gotten worse. She takes 1/2 tabs of 25/100 Sinemet plus 1/2 tabs 25 Lodosyn every 2 hours. I asked Mom's neurologist if we could crush and liquefy her medication and she said to do it in water. We've added 4 tablets of each medicine to 80 mil of water and given her 10 mil every 2 hours. But I'm concerned it isn't dissolving well and she doesn't seem to get help from the medicines. Is it ok to mix it in water? Also, is there a patch available? Thank you.
  8. PatriotM

    Trying Sinemet

    I'm now over 4 years since diagnosis. Exercise has been my primary medication for these past 4 years. About a year ago, my tremors were significant enough that people frequently asked what was wrong with me. The tremors made me look weak (sick), which is simply not acceptable to me. I began taking medical marijuana about a year ago and was very satisfied with the result. Not only did it improve the tremor, but it also virtually eliminated my frequent urination/urgency issue; lessened my fatigue; improved my sleep, and much more. All this improvement without side effects. Unfortunately, as time went on, I discovered several problems with using medical marijuana as the primary PD drug. None of these problems were related to medical issues, but rather legal and other practical issues. I discussed this in a recent post. Therefore, at my last MDS appointment, I discussed these issues with my MDS. He recommended trying Rimantadine. It had plenty of side effects but no effect on my tremor. He suggested trying Sinemet, which I am now doing. I'm taking one 25/100 tablet 3 times a day. One at 6:30 am. One at 11am. One at 4 pm. I was hesitant to carry medical marijuana in my vehicle and therefore often didn't take my medication on a very good schedule. With Sinemet, I can obviously keep Sinemet in my vehicle and therefore take my medication on a better schedule. The only significant side effects I've noticed with the Sinemet are nausea and vivid dreams (including nightmares). Sinemet does a surprisingly good job on my tremors, but doesn't do anything for my frequent urination/urgency issue. I also am not sleeping quite as well with Sinemet as with the MM. In summary, I believe that medical marijuana is the better drug. However, due to the legal and practical issues with marijuana, I am planning to reluctantly stick with Sinemet, at least for the foreseeable future.
  9. sheryl Ann

    medication schedule

    Dear Mark, I currently take 1/2 of a 1.5MG of Mirapex four times a day. I also take one 25/100 Sinamet three times a day. Could you please suggest a schedule? Should I be weaning off the Mirapex since I started the Sinemet or are they ok together? My stiffness has become a little worse and I feel my tremor is trying to come back. Should I request an increase in one of them? I don't know whether to mention it to my doctor, because my life style is not affected. Should I hold off on increasing meds as long as I can, or take whatever it takes to relieve the symptoms? I was diagnosed six years ago and am 67. By the way, I feel extremely lucky. I have no serious side effects from these meds. Thank you for your time, Mark Sheryl
  10. Buzka


    I started taking Sinemet 100/25 twice daily a year ago when I was diagnosed with Patkinson's diseases. After a few months I started to get blisters on my legs, some of them quite large, ie approx I cm in size. As I do not take any other medication I can only assume that it's a side effect of Sinemet. There doesn't appear to be any evidence to back my theory. I would therefore like to hear from anyone who has similar experiences.
  11. Hi everyone I've been lurking in the shadows here for a while and I have an exercise question that I can't find much of an answer for. First the question, then I'll give my background info for context. Everyone says exercise is a must for PD, yet I find that when I exercise, my symptoms get much worse for several hours, before returning to baseline. Though I recognize that in the long term it may help, it's hard to motivate myself to get off the couch when I know I will feel like heck after. This applies to any type of exercise, including just a busy day running errands etc. I have found that I can limit the impact slightly by being aggressive with my sinemet dosing, but I haven't found a good "formula" yet. My question is twofold - is this normal for people with PD, and if so, how do you manage the issue? Now my background. I'm 34, diagnosed 6 months ago, though I was suspicious of PD about a year before that. Much of that 1 yr delay was because my DAT came back normal and first neuro concluded it was likely just 'in my head'. Long story short I found another neruo, ironically not an MDS like my first one, and he made the diagnosis and started sinemet (due to problems with ICD's I can't be on the DA's nor Rasagiline, learned the hard way). Initially I was on 3 X 100/25 immediate daily, but symptom control was not great and it did not last long enough to get me from dose to dose. I also had some mild 'diphasic' type dyskinesias (so much for 5 years, I was dyskinesia free for 1 month . By 'mild' I mean it didn't keep me from doing anything but people would sometimes stare at me. Anyway my neuro upped the dose to 6 X 100/25 daily and after some experimenting I settled on the same dose but with a schedule of 4 X 1.5 pills instead of 6 X 1 pill. Currently my symptoms are well controlled through the day and dyskinesias nearly gone, though the evenings are a bit tough sometimes. But enough about me, what does exercise do for you (or to you ? -Ed
  12. pdmanaz

    Too much meds

    What happens if you take too much C/L? How does it make you feel or affect you?
  13. My mom was diagnosed with Parkinson's 10 years ago. We don't live anywhere near a doctor who specializes in Parkinson's, so we rely on her neurologist to adjust her medications. And they have been adjusted a lot. She was on azilect early on in her diagnosis, but went off of it because it was expensive. The only thing she is on right now is sinemet. She takes a half pill 5 times a day. Anything more than that makes her nauseous. She also takes a half an anxiety pill and half of a hydrocodone for pain when needed. She has tried many other Parkinson's meds but most make her nauseous or have too many side effects. All of this has affected her appetite, she has to force herself to eat because she has no appetite. She is 5'2 and weighs 82 pounds. She did well on Azilect before when she took it years ago. My question is this, does azilect work on someone with more advanced Parkinson's? Would it help cover the sinemet's "off" times? We are really at our last resort with medications. We have tried just about everything. Of course I also wonder if her having no appetite could be cause of a stomach issue of some kind. She gets indigestion a lot. She also takes 325mg of aspirin daily. Any thoughts you could give me on this matter would be greatly appreciated. Thanks Tricia
  14. Fifty-nine year old male with a fairly recent "probable" diagnosis of PD by an MDS after having a right hand/arm tremor (my only symptom) for almost ten months. Tried Propranolol (20mg, 1x daily), then Trihexyphendidyl (2mg, 1x daily), then Amantadine (100mg, 3x daily) with none affecting my tremor. In a previous post of mine on this forum where I asked you about Amantadine's effectiveness, you kindly responded the above meds were not optimum for treating tremor. You said Sinemet or a dopamine agonist would be better. Early this week in my follow-up visit, my MDS did prescribe Carbidopa/Levodopa (25-100mg, 3x daily) and stopped the Amantadine. How long is typical before I might notice a difference in my tremor? 1 week? 2 weeks? 1 month? I've read on this forum where some patients experience an almost immediate effect, but it looks like the length of time before it starts affecting tremors varies quite a bit, too. I'm just trying to set a reasonable expectation in my mind for the time frame before, hopefully, I see an improvement in my tremor. I have a follow-up MDS appointment in six weeks. Thank you for your time and commitment to helping people in this forum.
  15. Hi Everyone, I am new to this forum, though have been referencing it for years. My dad has Parkinsons, is in about his 12th year or so of the disease, maybe longer. I am so sorry to everyone out there who is so frustrated and disabled by this disease. It is so hard. My family is trying to figure out his dosing schedule. Any input would be tremendously helpful and appreciated. I know a lot of it is trial and error. I have always wondered if his other pills make the Parkinson's medicine less effective. Additionally, he wakes CONTINUALLY in the night shaking violently. This has become a terrible problem as he wakes up every hour. My dad has an Essential Tremor in addition to Parkinson's. He has had this since his early teens, he is now 70. His current pill schedule: -Carbidopa 25 mg-levodopa 100 mg tablet. Currently, my mom is trying: 1 pill at 7am 1 pill at 10:30am 1 1/2 pills at 1:30pm 2 pills at 4:30pm 2 pills at 7:30pm 1 pill at 10:00pm 1 extended release at 11pm right before bed -For his Essential Tremor he takes Primidone 50mg a day and Propranolol 320mg a day extended release. -For a mild A-fib, he takes Warfarin 5mg (1 1/2 on M,W,F. 1 on S, S, T, Thurs.) -The rest of these pills I'm assuming are blood pressure from what I can figure out triamterene 37.5 mg-hydrochlorothiazide 25 mg tablet, 1 tablet daily K-Tab 10 mEq tablet, extended release, 1 tablet daily Losartan 100 mg tablet, 1 tablet daily Amlodipine 5 mg tablet, 1 tablet daily Vitamin D2 5,000, 1 tablet daily My dad does do a recumbent for 5-10 minutes a day and knows to try not to eat protein with his pills. I would sincerely appreciate any advice, suggestions or tips on this schedule. Thank you so very much, Amy
  16. My mom is 74 years old. She was diagnosed with Parkinson's 9 years ago. She was taking 3 different medications Sinemet, Neupro patch, and Amantadine. She was having horrible edema in her feet and ankles. The Parkinson's symptoms weren't bad at this point. Because of the swelling the doctor decided to take her off of the Amantadine since that can cause swelling. When she eliminated that medication the swelling didn't go down but the muscle spasms in her face, causing her to stutter went away, which was good. She is still off the Amantadine. So the doctor decided to take her off the Neupro patch. That did it.....all the swelling is gone. But the bad news, all those Parkinson's symptoms that weren't so bad got a whole lot worse. For starters, she is a lot weaker and moves a lot slower. She is down to one medication, she only takes a half a sinemet pill 5 times daily. Anything more than that makes her really nauseous. She is very little anyway 5'2 and 90 pounds and is obviously very sensitive to medications. Ever since going down to one medication, she has terrible anxiety, some depression and her blood pressure either gets too high or too low. She is taking blood pressure medicine to treat that symptom. I'm just wondering if all this anxiety, depression and blood pressure problems have to do with "off" times because her sinemet isn't lasting long enough. She is reluctant to go on another medication because of the side effects like nausea and edema. Just wondering if anyone else has had these problems and what medications work best for them.
  17. iluvpugs

    Medications and Early PD

    My drug regimen for the 3 years since my PD dx has been Ropinirole 3mg twice a day and 2 mg once a day for a total of 8 mg a day and Amantadine 100 mg twice a day. My PD symptoms are mild, mainly stiffness and slowness, with no significant tremor. I take a variety of exercise classes every week including low impact Zumba, tai chi, and yoga. My stiffness was causing me to feel about as flexible as a tree trunk as my shoulders and hips just didn’t want to move. Cuban motion went out the window. So in January I told my Movement Disorder Neurologist that I was ready to try Sinemet to see if it would help with my flexibility. (He had been recommending this but I was previously hesitant and felt I didn't need it.) I’m now taking Sinemet 25/100 and have been titrating up for the past 6 weeks and have reached one pill three times a day. I’m also still taking the same doses of Ropinirole and Amantadine. I am starting to notice more flexibility in my shoulders and hips and my walking gait and arm swing have improved. Other people have also noticed improvement, so it looks like the Sinemet is making a difference. My neurologist said it would be okay to continue taking all 3 drugs – but I’m wondering if I really need all three, especially the Ropinirole. I’ve tried stopping the Amantadine before and I started feeling worse in a general way with more weakness on the right side. I just don’t want to take more medication than I need. I’m fortunate that I haven’t had any significant side effects – some temporary drowsiness from the Ropinirole and occasional temporary edema from the Amantadine. I’m taking the 3 doses of Ropinirole in-between the 3 doses of Sinemet. and Amantadine at the same time as the first two doses of Sinemet. I know Sinemet has a very short half life and Ropinirole has a much longer half life. I really don’t experience any noticeable “off” times. However I’ve read that researchers think the cause of dyskinesia may be the constant highs and lows caused by the Sinemet. So my questions are: 1. Does staggering the doses of Sinemet and Ropinirole increase the length of time I should feel the benefits of the dopaminergic effects? 2. Will continuing both Ropinirole and Sinemet flatten the highs and lows between doses of Sinemet? 3. Does taking both Sinemet and Ropinirole increase the likelihood of developing dyskensia’s sooner? 4. Is continuing on all 3 drugs recommended if there are no side effects? Thank you for your input - and I've ready both your books and highly recommend them to others as they are informative and easy to read.
  18. My mom is 74 years old and was diagnosed with PD 9 years ago. Recently she was on Sinemet, Neupro, and Amantadine. Her PD symptoms were minimal, but she was having severe edema in her feet and ankles. The doctor took her off of the Amantadine, and the swelling was still there, but the muscle spasms she was having went away so she never went back on the Amantadine. The doctor then took her off of the Neupro patch, and that did it, no more edema in her legs. Having gone off two PD medications her PD symptoms are now a lot worse. She has a lot of anxiety and spikes her in her blood pressure throughout the day. She is on two different blood pressure medications, plus clonidine to help with bringing the BP down immediately. And she takes clonazepam to help with the anxiety. She takes a half a pill of sinemet 5 times a day. This is the only PD medication she is on right now. If she takes a whole pill or takes it any more than 5 times a day she says she is nauseous. I'm assuming the blood pressure and anxiety has to do with not getting enough sinemet? What do we do to get the sinemet to last longer without all the nausea? Is there another medication she can take that won't interact with her other medications or make her nauseous? She has taken azilect before without any problems but I am afraid it might make her too drowsy with the anxiety medication. Any help would be appreciated. Thanks. Tricia
  19. Tricia L O

    Nausea with Sinemet

    Hi Mark My mom was diagnosed with Parkinson's 9 year ago, she is now 74. She was on Sinemet, Neupro, and Amantadine, but the doctor took her off the Neupro and Amantadine because of serious edema she was having in her feet and ankles. She is now only on the Sinemet. You can imagine going off that much Parkinson's medicine has made the Parkinson's symptoms much worse. She is a lot weaker and has a lot of anxiety where she didn't have any anxiety before (she takes Klonopin for the anxiety). I think all of this is because she is on the minimum amount of medication and has more "off " times than "on" times. She only takes a half a pill of sinemet 5 times a day. If she takes a whole pill it makes her really nauseous. She takes it with food but that doesn't seem to help. Is there anything she can take to help with the nausea? I'm not sure if changing to an exended release would help the nausea or make it worse. Any advice you can give me would be greatly appreciated. Thanks, Tricia
  20. BigE

    Is it time for DBS?

    I am 60 years old, 6'9", 220 lbs and was diagnosed with Parkinsons in August, 2010. My first visible symptom was a tremor in my right thumb in 2006. Today my main symptom is my tremor which can be seen at: I currently take 2 tablets of 25/100 Carb/Levodopa every 2 and one half hours starting at 6am with my last dose at 6:30pm. I take an extended release 50/200 when I go to bed. I also take 2mg Ropinirole three times per day. When I wake up at 6am I walk with a shuffle and feel in a daze,a little stiff, and my hand tremors. This can last from 30 to 60 minutes, then I feel good with no visible symptoms. I eat breakfast then. Most mornings I have a period of tremoring as seen on the video for about 15 minutes and can be as long as an hour. The same thing happens later in the afternoon. At around 9pm I feel like I am in a daze and will tremor again. My arm feels stiff and I feel in a daze again. If I wake in the middle of the night, my hand will tremor. I was told by a movement disorder specialist in September, 2014 that I needed to have DBS within six months, but I felt that I was responding well to the medications (9 tablets per day then) so why the urgency to have risky brain surgery. My Parkinsons has progressed. I have increased my meds and taking 13 tablets carb/levo per day plus the extended release. I do not have any dyskinesias. I have been told that the recommend max dosage per day is 1200mg, but perhaps I can tolerate more because of my size. Should I increase meds and hold off on brain surgery in hope of some less invasive treatment? I have read about the ultrasonic treatment, but that does kill cells. Perhaps another drug like Rytary? Sorry for the long post. Any comments would be appreciated. Thanks.
  21. Rashad

    High Blood Pressure

    Good Day, My mother (79 years old) has been treated for PD for 8 years now. The main medication is Sinemet 250/50 (1/2 pill 5 times daily / 3 hours gap between each dose starting 7:00am). Everything was going normally until recently her blood pressure started to get high at the end of each dose period, about 30 minutes before the next dose. This is making her very depressed and sometimes entering in a panic attack. Her physician prescribed Coversyl 5mg (Arginine) / one pill at night, and, Betaloc Zoc 50mg (Metoprolol tartrate) / one pill in the morning, but still the BP is not regulated. Here's a list of other medications mom is taking regularly: -Cipralex 10mg (Escitalopram) : 1 pill in the morning - 1/2 pill at noon. -Sifrol ER 0.375 (pramipexole) : 1 pill at night. Please advise. Thank you & regards
  22. Hello all. My name is James and I am new around here. My father, James Sr., has fairly advanced PD. He has freezing episodes throughout the day and occasional dyskinesia, albeit only slightly at this point. I am looking for advice on finding a registered dietitian with knowledge and experience in the relationship between protein and Sinemet. I’ve just ordered two of your books, Kathrynne, (Cook Well, Stay Well & Eat Well, Stay Well), and I know they will be a great help. However, my father struggles with reading more than a few pages at a time and processing the information (I know the audio CD with one of them will help). Having a dietitian sit down with him and building a relationship would be great. I have called a few local dietitians (my father is in Southern NJ, i.e. Medford) and, frankly, I am a little surprised how little all three knew about the interaction between protein and Sinemet despite listing expertise in gerontology. They all could help with a low protein diet, of course, but it would be great to have a dietitian who had knowledge specifically, in protein, levodopa and absorption. I am wondering the typical route taken in order to build a relationship with a dietitian, also, and I don't know if it is appropriate to ask this here, but I am looking for recommendations for Registered Dieticians in the Southern New Jersey area that have experience with the interaction between protein and levodopa. I know the books will be a great start, but building a personal relationship with someone would be great. Again, if this is not a great place to ask this question, I apologize and just let me know. Thanks! Best, James Johnson Jr.
  23. There are many reasons to think carefully before allowing your neurologist or MDS to talk you into starting PD drugs. Current PD meds only treat the symptoms, not the disease. Are the benefits worth the side effects? Are the PD meds addictive - do you constantly need more and more to achieve the same result? These issues have often been debated on the forum. However, there is another important thing to consider when faced with the decision to begin taking PD meds. When you take that first does of Sinemet or an agonist, you are eliminating yourself from being able to participate in many of the exciting new clinical trials. That is exactly what happened to me in the Isradipine trial. That 4 months that I took PD meds (Mirapex) eliminated me from the Isradipine trial, even though I stopped Mirapex many months ago. The same will be true of the Inosine trial next year. Take PD meds and you're out! I wish I had never taken that first PD med. The irony is that it was only moderately effective and the side effects were worse than the PD, which is why I stopped.
  24. RickCopple

    Amantadine and Dyskenisa

    Thought I would poll the hive-mind on what I've experienced by adding Amantadine to my RX cocktail, to find out if it is normal or am I unique in my experience of this drug. Because what I expected to happen didn't. Good news is I've experienced no noticeable side effects from taking it like many people report. I've been on it for about 3 weeks so far. This is being added to Sinemet 25/100mg 3x/day, and Azilect 1mg 1x/day. I've understood it helped with dyskenisa. My impression is that by taking it, it would help clear up those symptoms. The neuro prescribed it to help "smooth out" the symptoms. He did indicate I might want to lower my Sinemet intake down, suggesting to start with half a pill in the afternoons, but told me to experiment based on what my body is telling me. I decided to just take it (100 mg 2x/day) without changing anything else to see what would happen. It smoothed out the symptoms okay, including spreading my peak dyskenisa of about 30 minutes to 1 hour per Sinemet pill does every 6 hours to last closer to 5 hours. Well, that certainly wasn't progress. I'll take the 2-4 hours of dyskenisa a day over most of the day. But then it dawned on me. Perhaps I need to reduce the amount of Sinemet I'm taking to avoid dyskenisa. That the Amantadine also enhances the dose of Sinemet to last longer as well. So I took a half-pill at my next appointed time of Sinemet instead of the full pill. I still ended up with some dyskenisa, but it was noticeably less intense and didn't last as long. I then tried taking the Sinemet some time after the Amantadine instead of together as I had been doing, as I noticed very little dyskenisa in the afternoon Sinemet dose compared to when I took them together. That pretty much got rid of the initial minor dyskenisa. I discovered if I waited at least 1 hour after taking the Amantadine before taking my half-Sinemet pill, preferably 2, I experienced no to barely noticeable dyskenisa. It is down now to the point I'm taking only 1 to 1.5 pills of Sinemet a day. That leaves me with a very minor tremor and left-arm dystonia. When I feel those getting worse, I take another half-pill of Sinemet. I don't feel totally back to "normal" as if I didn't have PD, but it is quite a bit more manageable. And the big plus for me is my left fingers are responsive enough I can type more each day without my fingers wanting to contract. I'm thinking at least for the time being, I've found a good combo, if I can stay balanced on the edge without falling into much dyskenisa. But would it be then true that Amantadine works to lessen dyskenisa not by counteracting the effects of high dopamine on the central nervous system, but by enhancing the dopamine you are getting so you can cut back on the Sinemet to the point your intake is below dyskensia-producing amounts? That appears to be my experience, but I thought it was the other way around.
  25. Dr Okun, Now on Sinemet 100/25 ,1 1/2 tab 4t/d (6:00, 11:00, 16:00, 23:00 hrs). About to start Selegiline 5mg 2t/d. I read that it is very likely that I will need to reduce Sinemet a bit as Selegiline increases Sinemet efficacy. How much of a reduction should I expect for and on which dose. I know the snowflake metaphor that we are all different; I am just looking for a range. I.E. expect to reduce 3rd and 4th Sinemet doses from 1 1/2 to 1. Or may be even in increment of 1/4 tab? Also, how soon after starting Selegiline can one expect to see an effect on the symptoms/side effects? days weeks? Thank you Norm