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How can I minimise the wearing off sympto


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3 replies to this topic

#1 Appa

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Posted 29 November 2012 - 04:41 AM

I am dx with PD in 2008. From 2011 I started taking Madopar 200mg/50mg. From last week my neurologist put me on Stalevo 200/50/200mg four times a day. 9am,12pm,3pm,6pm. Very effective. But I am suffering from severe end of the dose wearing off symptoms three hrs after my 6 pm dose. Symptom last for about two hrs( from 9pm till 11pm). Very painful. How can I minimise the wearing off symptoms. Will this go away with time?

#2 Ken_S

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Posted 01 December 2012 - 11:55 AM

Appa:

First off, you should speak to your Neurologist about your bothersome symptoms and or side effects of medications. Sometimes it’s difficult to tell the difference between a side effect and a symptom; so whatever it is: if it’s a problem for you, bring it up. This was a hard lesson for me to learn: For the longest time I thought my wearing off dyskinesia was just the new normal and I should just buck up and live with it; turns out, I could not have been more wrong and a simple dose adjustment made a world of difference. You didn’t say what your wearing off symptoms were: that’s a pretty important little nugget of info.

I don’t know what the different combinations of Stalevo are but I do know that the constituents are Carbidopa, Levodopa and Entacapone (aka: Comtan). Instead of taking Stalevo (All three of these drugs in one pill) I take Carbidopa & Levodopa in one pill and Comtan (Entacapone) in another. As I understand, Comtan only comes in one dose (200 mg). What alleviated my wearing off symptoms (dyskinesia) was only taking ½ a comtan with my Carbidopa/Levodopa, it didn’t eliminate them but I did find a place much more tolerable. So, if your wearing off symptoms are dyskinesia or any of the other noted side effects of Entacapone, I suggest you discuss with your Neurologist the possibility of reducing your dose of Entacapone. No guarantee but it’s worth a try.

I hope you didn’t find my ramblings too confusing.

Good Luck
Ken
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Improvise, Adapt and Overcome


#3 Beau's Mom

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Posted 01 December 2012 - 12:13 PM

Hi Appa,

Having suffered a 5 week overdose recently of carb/levo, I found that it was the extra levodopa leeching out of my system that caused the worst dyskinesia. I also discovered that too much levodopa causes very serious side effects for me.

Also, I take carb/levo every three hours 6 AM to 9 PM. I go to bed immediately after taking my last dose. That way I sleep through any loss of levodopa. While we are asleep, we don't need meds, so I usually have about a 30 minute honeymoon most mornings, where I am fine without carb/levo. After that, things get very dicey!

Hope this helps; at least it gives you a couple of questions to ask your MDS next time you visit.

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

 

Diagnosed December 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 63: Duopa gel via PEG-J tube, 6ml loading dose; continuous dose 2 ml.  Trazodone 150 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 135 caregiver hours per month keep me moving.

 

Edited 2/5/2016


#4 Appa

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Posted 01 February 2013 - 05:30 AM

Ken and Beau’s mom thanks for your advise.
I am trying combination of Madopar 200/50 and stalevo 200/50/200 to better outcome. I am trying this for last few weeks. I take my first dose Madopar 10:00 AM, Stalevo12:00PM, Stalevo 3:00PM, Madopar 6:00pm. Everything is OK 9:00 PM. Around 9:00PM my left leg and left hand start to shake. Sometimes very violently. This will last for 90/120 minutes.
Even if I take another dose around 9:00PM, around mid-night leg and hand start shaking for 90/120 minutes and disturb my sleep. Basically three hours after my last dose this happens. Everyday around 90/120 minutes I am suffering from this hand and leg shaking at the end of my last dose. Anyone has similar experience or advise.




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