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Found 10 results

  1. 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!
  2. My husband's neurologist today prescribed a neupro patch of 6 mg to replace the 3 4-mg ropinorole er my husband has been taking for at least 15 years. This is being done to relieve the stiffness, toe curl, freezing, sleep disturbances etc. my husband experiences from about 3-7 am almost every night. During this time period he often can not get up at all. He talks a 11pmst dose of 1 1/2 tabs 50/200 carbo/levodopa er and 1 4mg ropinorole. Do you think the patch could help? What about stopping all the ropinorole? Is the 6mg neupro enough to take care of any withdrawal?
  3. MurrayPD2

    coming off agonist

    I quit my agonist meds about 9 days ago. The last couple of days, I seem to be wearing off in the afternoon/evening a lot; as if the last dose isn't taking too well. I woke up this morning stiffer than I have been in a long time on my left side. The morning before was fairly stiff. I am taking dopamine at night too... and I have increased my dopamine as suggested by the doctor. from 2.5 3xD to 3 tablets 3xD of C/L 100/25. I take one ER pill at night of 50/200 C/L. I also take entacapone with each dose. I feel more tired too.. I feel like I am just slowing down, and I am trying Amantadine; which was successful in the past, but caused swelling and webbed patterns on the skin. Yet, I will take that over the agonist. Any advice or similar experience?
  4. 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.
  5. lobo

    Need advice about Neupro

    Hi. I have been using Neupro for 3 1/2 weeks and the side effects since use of the maximum concentration patch have been worse than the disease itself. I started with 4 mg patch during 1st week. Not a problem except for a minor involuntary movement of left leg while watching TV. 6 mg patch during 2nd week, same side effect as during 1st week. Then, beginning 3rd week I started with the 8 mg patch and I experienced more intense involuntary movement and rigidity of left leg while walking (about 8 hours post medication). During these 6 years of diagnosis, my biggest problem has been only stiffness, neither tremors nor involuntary movements but with Neupro, I have experienced involuntary movements in the past days as never before, to the point that have started to cause pain in my abductor muscle (leg). Three days ago, my neurologist suggested me to reduce dose from 8 mg to 6 mg. So I tried one day the 6 mg patch but still experienced side effects and yesterday and today, I tried the 4 mg patch. The dilemma is that the benefit of the 4 mg patch is marginal but not side effects, whereas the 6 mg patch is more effective in terms of reducing the "off" period but its side effect is unconfortable. Is this involuntary movement normal at the beginning of treatment? Is one month good enough time for screening or still too soon to reach conclusions? Will side effects (involuntary movement) disappear over time? Anybody who has used Neupro for a while can make a suggestion, please? I also take Sinemet. I would be appreciative of your advice. Regards, Lobo
  6. skcher98

    Medicine Intolerance

    I was finally diagnosed with PD 6 months ago by a motion specialist backed up by a Datscan, motion test (uber cool) and clinical diagnosis from my neurologist. That was at age 37. My neurologist started me on sinimet and while it worked it made me incredibly sick. Levodopa was the next one and I was prescribed zofran to help. Again worked but as we ramped up on the levodopa again I started having massive vomitting. The Neupro patch was prescribed next which helps quite a bit. I'm at 6mg and I just deal with the nausea that comes with it. Went to the motion specialist at Emory and yes they confirmed the diagnosis after the motion test was done. Like I said hello, uber cool. Now I am on trihexyphenidyl pills. They are helping and the tremor is fairly controllable. Is there anything you might suggest in the medication area that might help? I've sort of been dealing with the nausea. Always have some ginger ale nearby to help and lots of green tea. I'm a little nervous that I am having such issues with medicine that I am going to run out of options. My tremor is considerably lessened on meds prescribed but I'm struggling on the cognitive end. Do you have any suggestions on any different medicines or other supplements that can actually help without the nausea? I work and I have to be careful on the side effects on meds I take during the day.
  7. Is there any information or medical opinions on drinking an occasional beer or wine with PD? Currently taking Azilec, Amantadine and Trihexyphenidyi and a Neutro patch.
  8. jolo

    severe sudden off-time

    Have had tremor intensive Parkinson's since 2001, 76 yo, live alone. Diagnosed by three different Neuro's (two of them movement specialists) Tremor, stiffness, etc, effects mainly right side. I also have ET, not bad though. Started Sinemet Feb 2012, 3 x 100mg/d, 5 hr apart, increased to 150mg in Nov 2012. Worked fine until Mar 2013. then it would work for an hour or two then turn off and many times not kick-in at all. I had never before experienced off-time so thought I had developed an allergy to the med. The sad part is if my first dose at 8am does not kick-in then my day is pretty well shot. My off-time is dramatic. It comes on within one to two hours with a sudden increase in severe tremor, slowness of movement, difficulty sitting and standing, shuffling gait and no energy for daily tasks. The strange thing is that I feel OK in the mornings with only slight tremor and movements OK. I am aware that if I don't take the Sinemet I will become weaker so I prolong it until 2 pm then suffer through the afternoon 3 x 100mg 3 hr apart. I am wondering if any of the experts on this forum have had a similar experience and are able to offer some advice as my Neuro apt is several months down the road. Neupro/Rotigitone patch is now available in Canada, would that help? Any other advice is appreciated! Thank You.
  9. I have just started applying a 2mg Neupro patch (titrating up to 4mg after 1 week) to supplement my 25/100 C/L 5x daily between 6:30am and 5:00pm. RLS and Dystonia are now bothering me more than PD. Of course the RLS and Dystonia are induced by PD. Normally I sleep like a baby, but Neupro is ruining my sleep and giving me a night time headache. It feels like being on amphetamines. I think I am getting some 'smoothing out' of RLS and Dystonia during the day, but I need nothing at night. A good night's sleep is great medicne itself, so I'd like to get rid of Neupro at night. Any experience or comments about applying the patch in the early morning but removing it after dinner sometime? I am not sure how medicnie is time released so I am nervous about playing around with it at this point. Is medince released for a full 24 hours or......well, I just don't know.
  10. bettersamson

    Question with Neupro vs. Mirapex

    Dear Doctors, My mom has been diagnosed with PD for almost 10 years. Her neurologist recently prescribed her with the 2mg Neupro less than a month ago. Her doctor told me that the neupro works like Mirapex (she is currently take Mirapex 1mg 3 times a day) and her doctor said she doesn't need to reduce the dosage of the mirapex. Since then her movement seems a little bit smoother than before, however, she seems drowsier and can not maintain her balance at all. In addition, her sleeping problem has been worsen due to anxiety. I read the instruction that comes with Neupro which says that oral medication may need to be adjusted with using Neupro, thus I can't help think this might caused by the combine usage of Mirapex and Neupro. Therefore, I wonder is my mother being overdosed with Mirapex? or is the Mirapex level too high? and should she reduce the dosage of the Mirapex. I contacted her neurologist for this question, but, like usual, never got any response from him. Thank you
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